Blaze Updates

Nicole

2011-04-05T07:25:00.000-07:00

Nicole Soutee died last night. This is the young woman, 21 years old, with Blaze’s condition. Her parents adopted her at 11 or 12. She didn’t have her last surgery until the age of 12, because she had been in foster care and the state wouldn’t pay for it. And to be fair, it was a newer procedure at the time. Her condition was compounded with other complications along the way.

Her mother, Helen, works with Tim at the court house and has been a fantastic friend to our family during Blaze’s issues. We used the same cardiology office in Springfield and both had Dr. Huddleston for a surgeon. Helen has been such a blessing to Tim, a great resource and someone who understands his worries and frustrations.

We took Blaze over to meet Nicole at Christmas time. We enjoyed meeting her. Because of her conditions, she was very small for her age. Shortly after our visit she had her 21^st birthday and she had always wanted to go to a casino. She had the body of a 12 year old and was constantly carded. I laughed in delight of her getting to go and consistently having to prove her age. I bet it was a challenge for everyone, and a funny memory now. She had already lived longer at that point than expected. She constantly exceeded everyone’s expectations. I think she just wasn’t ready to let go.

February 11, 2011

2011-02-11T08:44:00.000-08:00

Blaze has gotten into the habit of climbing over the baby gate in his door or slamming his door and banging on it at 5:15, 5:45…somewhere in that time range…every morning.

SO! We hatched a plan.

Last night when Blaze went to bed, I showed him the clock in his room. I said, “When this first number says 6 you can leave your room.” Tim went on to explain 6:30 to Blaze and we told him that’s when he could leave his room in the morning, that we would see him then.

After that, I vegged out at home while Tim drove into town and bought a second portable baby gate at Wal-Mart. We put the second gate up, above the first one in Blaze’s doorway, leaving some room for the doorknob to fit through between them.

At 6:00 a.m. Blaze awoke, threw up his door and saw the 2^nd gate. He didn’t fuss, he didn’t whine…in just a tad bit distressed voice he said, “What am I going to do? What am I going to do?” then calmly followed it up with, “Think! Think! Think!” I felt bad for him, but waited awhile before going in. When I saw through the baby monitor that he was in bed, looking at the doorway, assessing the situation. I refrained from going in there at all. At 6:30 Tim’s alarm clock went off and Blaze began knocking on our bedroom door. I went and answered it. There was my happy little Blaze smiling up at me in the hallway. Not only had he turned the hall light on before knocking, he also turned on the stairway lights. I laughed and sat down on the floor with him. I said, “Blaze! I am so surprised to see you out of your room. We need to go back into your room to change that stinky diaper. Can you show me how you got out?” He looked at me, attempted to stick his head under the gate (which could never have worked at the angle he was approaching it) and said, “Oops, I’m bigger now” and just grinned. He refused to show me how he did it. I finally just took down the lower gate and we crawled through. J I got the impression that perhaps he laid down flat on his back and scooted underneath the bottom one, but I’m not totally for sure. He really can suck in that belly. J

I am bemused by the situation, very proud of my little guy’s ability to solve a problem, but really left with two questions…did he really understand the 6:30 thing or was that an accident? And how DID he get out of that room??? Sigh…the mom may never know!

Joy

Merry Christmas 2010

2010-12-22T15:31:00.000-08:00

Blaze had a cardiology appointment on Monday of this week. Dr. Tong pronounced it “a boring appointment.” Beautiful words, indeed. Internally he continues to thrive. We are so grateful. I was getting nervous because Dr. Tong seemed to take longer coming in to meet with us after the appointment, but everything looked great. Blaze behaved himself very nicely, too. The previous visit he was full of rage and anger when they wanted to put things on him, which is understandable. He had chilled out a lot this time, I was so glad. We explained the day before that we were going and they would be taking pictures of his heart. When they put the wand on his chest to do the echo, the resisting stopped as he looked at the monitor and said, “Well, look at that!” He was so amazed and in awe of the pictures coming out of him. He’s up to 27 pounds! Hooray! We’re getting there. Our next appointment is in April.

Blaze is very excited about Christmas. After his cardiology appointment I took Blaze shopping for Daddy. In his defense, he did slurp down an entire small chocolate shake on the way home, and he had been to the doctor for two hours that day, so he was getting goofy in the store that night. He would lean to one side and hang his head over the edge of the cart. He would try turning in the cart. He didn’t like any ideas for Dad and we both were getting frustrated. Then he saw the outdoor Christmas display aisle. We have a couple of things in front of our house, but our neighbor down the street really has everything out. People drive by to look at his displays. Blaze loves walking over and looking at the train, various displays and the nativity. He and Daddy always sing “Happy Birthday, Jesus” when they see the nativity display. So, at Target, Blaze begged to go down the “CHRISTMAS!” aisle. As we were walking down, he started saying, “Happy Birthday, Jesus!” I was very humbled by my little guy. I told him that yes, that was why we celebrated Christmas, because Jesus was born. There was not a nativity display in Target. A few steps later he saw another display, “Oh…sweet little pig” and yes, it was a rather large pig wearing a Santa hat. The moment was gone that night, but I pray that I always remember to consider Jesus, every day.

Thanks for keeping us in your prayers! We are so blessed.

December 13, 2010

2010-12-13T10:31:00.000-08:00

Blaze continues to grow, thrive and make his family laught! He is excited about Christmas, or "Kiss-a-mus" as he says it. There was snow on the ground Sunday morning when he got up. I showed it to him through the window. "What IS it?" he asked. I told him it was snow. "What IS it?" he repeated. I explained that when it's cold outside, instead of getting rain, sometimes we get snow. "What IS it?" he said again. Finally explaining that it meant it was cold outside worked for him. Later when the wind was knocking the Christmas lights against the house, we repeated the same process.

Melissa continues to watch Blaze for us, though she has moved out of our home and into an apartment with her sister, Megan. We moved some of Blaze's toys into her old room to give him a play area and allow us room to put up the Christmas stuff. Blaze saw her apartment before she moved and we were careful to explain to him what was going on during the process. He hasn't been upset by the turn of events, which surprised me a bit. She's lived in our home since before he was born. He's adjusted very nicely to the change. In the morning now when he wakes up, he gets to snuggle with Mom and Dad and watch a cartoon before she arrives. We're all loving this morning time. It's been a nice change to our day. I've always hated mornings, now they're nice. It's amazing what one little guy can do!

Tim had a birthday last week. We had extra fun activities. Blaze got to see his grandparents, eat out at two restaurants in one day, play with another friend at Jump Mania to give the parents time to talk and then this friend loaned him a large Transformer to play with at dinner. Blaze was in "awe". He was so engrossed with the toy, he ate more at dinner! He really enjoyed Daddy's birthday! Grandma and Grandpa brought him a "Christmas outfit" to wear for a picture. He posed very nicely. He really likes his red vest and white turtleneck. He loves to see his grandparents.

Blaze has learned a complicated way to safely climb out of his crib. Bedtime was a challenge for the first time since he was a newborn last night. He would pop out of his room and I would put him back in bed. After several meltdowns and explanations he decided Mommy was serious and "stayed put." I told him I would sit in front of his door all night if I had to, but he was going to go to bed. That's when he finally gave up. He decided he couldn't "reason"with a frustrated mommy. Ha! We're going to have to convert the crib to a toddler bed soon. It's a whole new world for us!

Any of you who know Tim's parents or knew my dad wouldn't be surprised to hear we have another singer in the family. I don't know another 2 year old who can sign "If I had a Hammer", "Free Fallin'", "Jesus, Jesus, Jesus, Sweetest Name I know" and Elmo's version of "One, Two, Three, Four" so easily. It's an odd repertoire. Between my mom, Elmo, Lego Rockband, and Christmas songs, he's learning a variety. It's never dull.

This weekend we developed a new game. Blaze slides in betwnn Tim and whatever Tim is leaning against (couch cushions, bed, etc.) and Tim gently leans back. Blaze shrieks, "No, Daddy! It's me, Blazey!" Tim says, "What? I don't know what's behind me, but it sure is soft and lumpy." Blaze yells, "I'm stuck, help! Help!" in a high-voice. He totally throws his voice in order to yell for help. He is, obviously, not stuck and in no danger whatsoever, but it makes me laugh hysterically when he does it. He is a funny kid.

We, as a family, are very aware of those who are hurting and struggling this Christmas season. It's been hard this year for us to get into the "Christmas Spirit". So many of our friends and church family have had loved ones pass away and the hearts left behind are feeling emptier. Through my work I meet hundreds of people on a weekly basis who are struggling without work or financial support. Ourselves, we are facing mechanical difficulties with our vehicles (yes, AGAIN), Blaze's surgery next year and major changes to our health insurance. There is so much hurting, sadness, and uncertainty, it's made it a bit harder this year. However, I rejoice in this time of year and I'm so thankful for Jesus' birth. We've been given so much, it is wrong not to be thankful for it. I do want to say again, as I often do, that we are incredibly blessed. We have been blessed beyond measure and we strive to remember that every day. We are blessed, too, to have you in our lives. Thanks for the continued prayers. I don't know where we'd be without them!

Merry Christmas!

December 3, 2010

2010-12-13T10:19:00.000-08:00

We had so much to be thankful for this year! Our healthy heart baby (which sounds like a contradiction, doesn't it?) tops the list. He has exceeded expectation time and time again. We got to celebrate Thanksgiving with both of our families. What a treat! It was a trial run for Christmas. If he managed to stay healthy for Thanksgiving, we would plan on going to our families for Christmas. Guess what! As of now, we are planning to go! This will be the first Christmas celebrated outside of our home since Blaze's birth. What a blessing!

Blaze had a terrific time with all of his cousins. At his Grandma Cathy's house he got to play with my cousin's daughters, Ella (almost 3) and Mara (18 months). At Grandpa Floyd and Grandma Becky's he got to play with his cousins: Annika (3), Audry (3), Ty (18 months) and a four year old family friend. It was so much fun for him. He kept asking for his cousins after we got home. Great-Grandparents, Grandparents, Great-great Aunt, Great Uncles and Aunt, Aunts, Uncles, Cousins, Friends...it was an exciting time and he was such a sweetie! He had a new hair cut before we left and his eyes were especially sparkling during the week.

God is good! Thanks for your continued prayers. We appreciate them more than we can say. We're thankful for you, too!

November 16, 2010

2010-11-16T13:29:00.000-08:00

We have been blessed beyond measure! I'm sorry this latest update has taken so long. It has bee "inthe works" but due to some technical difficulties, we weren't able to post. That has obviously been straightened out. We will do better! Thanks for sticking with us and praying for Blaze, despite the lack of updates!

Another reason for not posting a recent update is that he is doing so well! We have "normal" little boy issues occurring...he's trying to climb the kitchen cabinets, he gets himself stuck in things, he knows how to grab a footstool to climb up to where he wants to be...he's the stretchiest little guy I've ever seen! You never know where he'll be or how on earth he got up there.

On Halloween Blaze dressed up as the Cat in the Hat. We went to a friend's house who has some acreage outside of town. There were deer in her back yard and Blaze was fascinated. The deer were quickly scared off by the dog of the house. Blaze decided he wanted to take off after them. It was a few moments before I realized he wasn't coming back!! He kept running for the timber, so I took off after him. So, we had deer, dog, miniature Cat in the Hat and his momma running across a field. It was funny. I got him close to the house and he took off again!!! The little guy just wanted to run on some flat land! (Our yard is not what anyone would consider "flat".) Another fun thing we got to do was take him to the local Pumkin Patch. Rubber duck races, a box of corn, live pigs, tricycle races, hay & corn mazes, several slides and a hay ride are just some of the activities he participated in. We actually went more than once and got lots of great photos with some friends of his. Such a fun time.

We're looking forward to taking him to Thanksgiving dinners with our families. That was usually a sign that it was time for us to hibernate with him afterward, to keep him safe from germs. If he's still feeling well, we're planning on visiting folks for Christmas! We'll see how it goes. It's exciting to realize all he's been through and how incredible he's doing.

Please keep Pearl and Jake in your prayers. Both are experiencing some grave health concerns. We're praying for both kids and their families.

Thanks! We're so blessed to have you in our lives!

Back home

2010-02-22T15:48:00.000-08:00

Blaze was released from the hospital at Jeff City about noon Friday and they immediately headed home. Blaze was happy to get home and see Melissa and Maggie. He soon went to sleep in his own bed and slept for 13 and 1/2 hours! He's still not fully up to par, but he is doing well and getting stronger each day.

Thanks for your prayers.

In Hospital for Observation

2010-02-18T19:02:00.000-08:00

Tim & I took Blaze to the ER in Jeff City today. They decided to admit him for observation. They did find he has a viral stomach flu. He is on an IV and you can tell a huge difference in him. He was on the verge of dehydration. For a heart baby that's a terrible thing. He's resting very peacefully right now.

I am so grateful to know that one of his nurses trained on "7 West" the cardiac floor at Children's that we left on Sunday. That did make me feel better about the situation. They do NOT believe this is anything heart related. They just have to be cautious because of his heart.

I am experience the stomach flu myself. I have lots of sympathy for my sick little guy. It's rather miserable. Tim's staying with him tonight at the hospital so I can rest and recoup. Will let you know more when we know more.

Thanks for your prayers!

Rough Time

2010-02-17T19:26:00.001-08:00

Blazey is feeling MUCH better today. Still too sick to travel. He's beginning to eat more. Hopefully that will help him. Yesterday I felt scared and desperate. Today I feel more peaceful about how he's doing. Thanks for your prayers!

Still Sick!

2010-02-16T19:51:00.001-08:00

Poor baby, he's just miserable. If things aren't remarkably better tomorrow, we're taking him in for a medical opinion. We feel he's still hydrated, but he just is miserable. Tim & I are getting very concerned for our little boy.

Thank you for your prayers!

A Sick Little Boy

2010-02-15T19:35:00.000-08:00

Blaze is not feeling well at all. His tummy's upset and he's just feeling rotten in general. We called Children's and his doctor. We're playing the "wait and see" game. Tim & I think it's probably a reaction to the antibiotics he was given. We're still in Jeff City, it's impossible to travel with him at this time. He's rested a lot today, hopefully he'll feel better soon! We're nervous about this situation, but hanging in there.

Outta There

2010-02-14T19:25:00.000-08:00

We have left the hospital and are at Tim's parents' house in Jeff City! We were just absolutely shocked and amazed when the doctor came in today and said, "I'm sorry, but we've over-estimated the amount of time you needed to spend here. Would you like to go home?" (We had previously been told we couldn't leave until at least Tuesday.) We just stared at her. Tim had teased her yesterday and for a few moments we thought she was messing with us. But amazingly enough, it was true! It turns out the "bug" that they found in Blaze's bloodstream was actually a contamination. It was a bacteria found from skin, not growing in his bloodstream. His fever had been caused by his double ear infection, not by anything else. The heavy duty antibiotic rounds they gave him cleared up his ear infection and we left before noon today.

We are so incredibly grateful to have our well child out of the hospital and back in the loving arms of family. It's mind-boggling to consider we went from "isolation" with required masks and gloves to walking out the door.

Thank you so much for the kind emails, calls and texts. This was a scary and stressful stay for us, we thought it would be an easy over-night procedure and it appeared to be something potentially life-threating. Your prayers and support really encouraged and helped us. Thank you! Please sign the guestbook. We love the encouragement.

Looking forward to a night's sleep without alarms going off and no masked nurses with flashlights to scare our boy...Joy

Saturday

2010-02-13T10:33:00.001-08:00

Last night they realized that Blaze has an ear infection in BOTH ears, poor little guy. No one had looked into his ears until that point. It was sort of a relief to know it was a normal baby thing, not anything else...until today when they got the bloodwork back and there is a bacteria growing in his bloodstream. They can't narrow down exactly what it is until it grows a bit more. They will take daily cultures and blood from him until they figure out what this is. They're saying we will be here at least 3 more days. Last night they put oxygen on him, since his oxygen saturation levels weren't where they needed to be. It appears that his oxygen goes down while he sleeps. So far today, during his naps, it hasn't been a problem. Today they've been watching his blood pressure very closely to see what's going on. After he took his meds, the blood pressure went down to what it should be. They just were late getting his meds to him. They're not worried at this point. So, we have a lot going on right now. The bacteria is the main thing. They're giving him what they call the "big guns" antibiotic. It tends to make people break out in a very irritating rash, so they're standing by with the Benedryl. Tim and I are handling things very well at this point. There have been a few emotional rides in all this, but we're doing really well. Thanks for your prayers!

Better...Still in Hospital

2010-02-12T17:31:00.000-08:00

About 4:30 this afternoon, Blaze was alert enough to communicate that he wanted food and water. After half a container of pudding, lots of ice chips, an ounce or so of juice, some animal crackers and applesauce, he fell asleep again. And he kept it all down! Hoo-ray! That was a big relief.

We're still in "isolation". They actually moved our 2 week old roommate out and let us stay in room 5 on 7 West. We moved over to the side of the room that was more accomodating for one of us to stay with him overnight. That was a huge blessing. There's a cushioned bench on that side, rather than a chair with a pull out footstool. Last night I held a very restless and miserable Blaze all night. Tonight Dad is in the hospital with Blaze, while I rest at the hotel. Blaze is feeling better, he's sleeping PEACEFULLY in HIS OWN BED!!! Tremendous blessings. Hopefully Tim will be able to rest there tonight. Last night Blaze was so miserable and he cried when I would try to lay him down. I didn't want to keep our little roommate and his mommy up all night. As it was, the boys took turns crying and sounding their alarms off. At midnight the little guy next to us pulled out his feeding tube and the nurses decided to use this time as a training time for his mom to learn how to insert it. Needless to say it was a very long night! I hope and pray tonight is better for all of us!

We did learn this evening that Blaze's white count is up, and they suspect it is bacterial instead of viral. They are pumping antibiotics through his IV. Hopefully he will fight this off quickly and effectively. They took a culture this morning and will have more information for us tomorrow mid-morning. We'll keep you updated!

Thank you for your prayers, they are getting us through!

Fever

2010-02-12T12:26:00.000-08:00

Blaze has a fever that is keeping him here in the hospital. They thought perhaps it was just his body reacting to having something done to him. Now they don't know. So, they've done a blood draw and culture, and had his nose swabbed. On this floor, having your nose swabbed is an automatic "isolation room." Everyone in the medical field will have to wear a gown, gloves and possibly a mask when they come into Blaze's room. They can't afford to have other heart babies sick, if what he has is contagious. They feel like we've already been exposed to whatever it is and we won't have to "suit up." As soon as the room is cleaned for us, we will move to room 2 on 7West. However, the best way to contact us is through our cell phones or email. Nurses frown on having the room phone ring. Tim's cell number is: 417-251-1727. Joy's cell is: 417-251-1728.

Last night was really rough, he was restless and was sick to his tummy. Joy kept trying to lay him down, but he likes to sleep on his tummy. He had several leads monitoring him, and every time he tried to lay down to sleep he would lose one and set the alarms off or it was just uncomfortable to lay on and wake up fussing. He's slept in his bed most of today, with Imagination Movers playing on his dvd player in his crib. He's wiped out and doing his best to fight whatever this is off. At this point they're not sure what's causing the fever, but at this point their guess is that is NOT an infection. His fever came on so suddenly after the heart cath, they feel that he was probably exposed to something before the cath and it just happened we were already here. We'll see!

Thank you for your support and encouragement. We are so very grateful this happened while we were here at Children's. If this had happened at home, he'd have to go into St. John's, or if we were in Jeff City as planned, he'd have to probably be transported to Columbia. It's good to be in a safe place for him. We'll keep you updated.

Heart Cath

2010-02-11T12:42:00.000-08:00

Blaze was the first one taken back for a heart cath this morning. Things went very smoothly. He had several collatoral veins and what they considered "significant blockage." Collatoral veins are veins that the heart grows when something is blocked somewhere. It's the heart trying to be helpful. Because of Blaze's plumbing, there's a specific route the blood must flow along. By those veins being there, it actually takes the blood out of circulation and it pools there. To fix this they put in ceramic beads in places and platinum coils in others. Everything they did was "MRI friendly", in case he ever needs an MRI in the future. For the blockage things got a little more complicated than they expected. It's not that rare for kids with Blazey's reconstructed heart to have the blockage, about 25-30% of the kids do. It IS rare for them to have to have a second ballooning. They realized that this blockage was pretty much the same as last time, and a ballooning wouldn't be enough. There was a stent recently approved by the FDA made for pediatric patients. This is very new and Blaze has it now. This stent will actually "grow" with him into adulthood. They can keep expanding it to accomodate a "grown up" heart. We are amazed and grateful for the technology that's out there now.

Currently Blaze is on medication where he appears to be sleeping. He can still hear us and occasionally can move, but he is very sedated. Unfortunately, the medication is messing with his heart rate. As it begins to dip, Tim and I will whisper to him and bring it back up again. They only want to keep him on the medication for another hour or so, then they will allow him to wake up. We're expecting to have a handful of a child at that point.

When Tim and I went to lunch today, we also met with Pearl Hollan's mom. Pearl is a little one from Springfield who has undergone a major surgery involving the removal of lymph nodes, all of one kidney, most of the other kidney and I think her liver. She has had a fever for three days now and her mother's due date for her sister is today. They would really appreciate your prayers.

Blaze and I will spend the night tonight at Children's. He should be dismissed sometime tomorrow morning. Thank you for your prayers on our behalf. We feel them! :)

St. Louis

2010-02-10T14:25:00.000-08:00

We're in St. Louis now. We came in this morning from Jeff City. Going to Jeff City last night we only ran into blizzard-like conditions once. : ) Things were better after that, though the wind was horrid most of the way. This morning things were MUCH better, drive-wise.

Our first appointment was during nap time. Blaze had his echo and EKG done with a dvd player under his nose. It really helped and seemed to distract him. We met with a nurse who guides families through the heart cath procedure. She remembered us from last year and was really impressed with his size and growth. She answered our questions and gave us instructions for tomorrow. We are the first ones going in tomorrow. We're grateful, even though it's a 6:45 check in at admissions. He won't be able to have solid food after 1 a.m. or drink anything but water or apple juice after 5 a.m. Blaze typically wakes up a little after 6, so he won't have a chance to get hungry before he goes in for the procedure. The hardest point of the procedure is getting access to his vein. Depending on what they find once they "get in", they may need to observe him overnight. He will be sedated for the time after the procedure where he must lie still. We left that appointment feeling pretty confident on how things would go.

Then the x-ray. After waiting a long time to get in (though there are flat screens, x-box 360 games and books galore to entertain in the x-ray area), the x-ray did not go so well. It took three people, including Daddy to hold Blaze down, and then they had to do it 3 times because he still wouldn't lay still. He's just amazingly determined for such a tiny fellow. He did get 3 stickers for his troubles.

After the x-ray, we went up to talk with the anesthesiology department. The woman there was in the NICU when Blaze was transported there immediately after birth. She was astounded at how well he looked. It made us realize how small he was last year when he was here for his surgery. We're so grateful he's doing so well. She said, "it must have been a hard choice, deciding whether he should have surgery or not. Did they offer hospice care as an option?" I was just shocked. We were able to share our testimony of Blaze with her, and give God the glory for how well he's doing. She agreed that it had to have been God, for him to be doing this well. She was quite impressed with him. She ran a pulse-ox, checked his weight (again) and talked with the doctor. He said not to count on him spending the night, not to take the medicine we were told he should take before and in general sort of contradicted our first meeting. You've gotta love days like this. We're following his instructions for the meds, but we're prepared either way for Blaze to stay at Children's tomorrow.

By this time it was about 2:20, we hadn't eaten lunch and Blaze never did get that nap. So, here it is at 4:39 p.m. Both Tim and Blaze are napping, and I'm in the Business Center of the hotel updating the site with just socks on my feet. Blaze's crib trapped my shoes and there was no way I was going to wake him up to get them. It's been a crazy day, but we're grateful we're here safe and sound and have heard so many encouraging things today. Blaze noticed several things at the hospital that caught the attention of various doctors. Everyone's telling us how observant he is and how he's thriving. It's so good to hear. Music to a parent's heart.

We love you all. I'll update this tomorrow, once his cath is done and he's out on the floor.

Joy

Christmas December 28, 2009

2009-12-28T20:33:00.000-08:00

Blazey had a great Christmas and it’s not even close to being over yet! We each opened one gift on Christmas eve. He thought that was fun, but wasn’t overly thrilled about it. He did enjoy helping us open our gifts. Christmas morning when he woke up, he was surprised to see all the Christmas lights on. Then we pointed out the stockings had stuff in them. He was so excited to open it up. His sock had several Sesame Street Books, a small round palm-sized Elmo and Count, and a Cookie Monster ornament. He was happy to put his ornament on the tree. We had breakfast and slowed things down a bit. Once breakfast was done, we read the Christmas story from Blaze’s Bible. We had his toddler nativity out, and pointed out Mary, Joseph and Baby Jesus. Blaze did the sign language sign for “baby”. I was pleased he made the connection. Then he got to open up his gifts. He was happy with his gifts, then we took him to the other side of the room where something was covered up by a red throw. He helped me pull it off, and just stood there in shock. Elmo’s Restaurant was there before him. Tim quickly turned it on and all these voices came to life. For the next hour, we watched Blaze cook and play with his “restaurant” while we exchanged gifts. He loves the cash register, hides the fake food, throws money in the air, and loves to hear Cookie monster phrases from his oven. It was definitely a “hit.” He also received a toddler digital camera (he looks at it and smiles really big), pjs, a pirate ship ornament (since he and Daddy were pirates on Halloween), magic Bubble stuff, sidewalk chalk and lots of other fun stuff. Tim and I had a wonderful Christmas day with our little boy. He was so stinking cute! He said our names so sweetly when we were with him at home. I think he’s figured out we’ll get things for him faster if he sweetly asks us, rather than yelling! I can hope anyway.

Saturday my mom, grandmother and younger brother came to visit. Blaze hugged his new little stuffed animals to him, a baby Tigger and a dog. It was love at first sight. The dog was from Uncle Steve, Aunt Sherrie, Megan and Layton. It was perfect. From his great-grandma Blaze got a matching sweater, mittens and hat set (very cute.) Grandma Cathy got him a portable dvd player for those long car trips to her house and a leap frog learning frog. When he’s not with his Elmo’s Restaurant, he’s making the sunshine song sing on the frog! Uncle John gave him a Farmer Says SeeandSay. His Uncle Gary, Aunt Barb and the cousins got him lots of nice clothes and a fun wooden shape puzzle. He loves the puzzle! I loved the clothes! We had such a nice visit with them. We were afraid they wouldn’t be able to make it. Their town got ice and snow dumped on them, but they found a way to get here, and I was grateful.

We’ll do our Christmas celebration with Melissa tomorrow. We didn’t want to open gifts without her. Tim’s parents come on Friday, his grandparents come on Saturday. I’m so glad we get to spread things out a bit. Blaze likes to look at and play with each thing individually. It makes it fun.

Thanks for all the cards and prayers. We were grateful for all of them. We are so blessed!

Joy Gilzow

Blaze's visit with Santa December 22, 2009

2009-12-22T15:27:00.000-08:00

Last year we dressed Blaze up in a Santa outfit and dashed off to Bass Pro for his free visit with Santa. He didn’t mind. He snuggled in and Santa smiled and it’s a lovely Santa visit memory. We decided to keep the tradition this year. We took Blaze back to Bass Pro, minus the Santa outfit, for a picture with the rotund fellow. Blaze did NOT want to leave his daddy’s arms. I told Tim just to kneel next to Santa and hold Blaze. Santa had other ideas and ended up taking Blaze from Tim. It’s the saddest Santa picture you’ve ever seen. Blaze looks furious and desperate to get away. Santa looks equally unhappy. As soon as the picture was taken, Santa got up and took Blaze to Tim. I didn’t know Santa would leave his chair. He will. It’s just a good thing there’s no way for screams to be captured on photographs.

We then went to the large waterfall/fish tank at Bass Pro. Daddy and Blaze were friends again then. Blazey had been a little miffed with his father for letting Santa take him. Blaze was in awe of the display and the huge fish swimming past him. He pointed and jaw dropped. We got some fun pictures there.

We then ate at Famous Dave’s where Blazey LOVED the drunken apple and the décor. They put a Santa hat and beard on a ginormous moose that resides over the fireplace. Blaze tired quickly last night, though. He had a long day. He said, “Momma!” and laid his head down on my shoulder, while he was still latched in his high chair. I asked him if he was ready to go home and he just nodded his little head. We boxed up the rest of our food and headed home. He was such a good boy.

Before going to bed, Blaze showed Daddy the snowman cake he helped decorate. I was given a snowman cake pan last year for Christmas. I baked the cake and covered it in icing, then left it for Melissa and Blaze to decorate. Using M&Ms and one piece of leftover candy corn, they made the cutest little snowman. We’ll post a picture of it before long. According to Melissa, Blaze got to pick out what colors he wanted on the cake. So fun.

In the last minute rush of things, it’s our prayer that you remember the reason we’re celebrating. The packages and surprises are fun. But, it is nothing in comparison to that amazing gift we were given all those years ago.

Christmas with Blaze December 17, 2009

2009-12-17T15:26:00.000-08:00

Christmas is a whole new experience with Blaze in the house! Instead of our beautiful, big, rotating Christmas tree, we have a skinny 4 ft tree on top of a table, and it’s adorable. We now have a stocking that has Tigger and Pooh on it and it plays music, who knew such things existed? Singing snowmen don’t sound nearly as cute without a delighted face attempting to loudly sing along. Did you know they make nativity sets for toddlers? Our “little people” set has pirates, a farmer, a veterinarian and nurse mixed in with the shepherds, angel and sheep…and it’s fun. He can throw them, chew on them and carry Baby Jesus around and no one fusses or bats an eye. It’s terrific. Our set even plays “Away in a Manger” and the star lights up. He LOVES it. Oddly enough, you never know where you’re going to find a shepherd. He likes hiding them all over the house! It’s a great game and each grown up gets a lot of satisfaction in knowing they are the one that has found the missing piece to the set. Blaze just thinks it’s funny to watch us look all over the place, I’m guessing. Did you know there are shape books that have squeaky Christmas trees and Snowmen on them? Blaze doesn’t know that either, yet. I cannot wait for Christmas eve where Tim and I will spend the evening after Blaze goes to bed putting together Elmo’s Restaurant as a special surprise. A digital camera designed just for toddlers will join it in the general area of the Christmas tree. I have never been so excited about giving a present before now. Christmas lights have taken on a new wonder and amazement. Who knew a colored light bulb could be so delightful? It was nice before, it’s wonderful now.

We have decided that it’s best for our family if we stay home this year. We hate missing seeing Blaze’s cousins, aunts and uncles open their gifts. And we hate not being there to laugh and fellowship together. But, Blaze is doing so well right now and since he is going to need his heart cath/ballooning early next year, we just can’t have him sick right now. So much of our life now is a trade off…Do we risk that restaurant? (Yes, with alcohol wipes to wash EVERYTHING down and a protective cover over their high chair. We’ve got to be in a corner, though, and discourage people from touching him.) Should I take him with me to the store? (No, not unless it’s absolutely necessary.) Church? (No, it’s too risky, someone might have been exposed to the flu and accidentally pass it on.) We just have to be careful. Thanksgiving was sort of a trial run for us. It was great to see family, but Blaze didn’t travel well, his schedule got completely thrown off and he got sick afterwards. So, for his sake and our sanity (hopefully we won’t constantly worry like we do when we take him out) we are staying home for Christmas. Blaze gets to sleep in his own bed, stay on his nap schedule AND grandparents are coming to us. It’s great. It is hard for us to not be there with others, but we’re seeing the benefits of staying at home, too. My mother, brother and I hope grandmother, are coming the 26th. Tim’s parents are coming January 1st. And Tim’s grandparents will come some time in between. We’re so happy and blessed to have such accommodating family! Plus, we get to spread Christmas out over an even longer period this way.

Last Sunday my mom was in town and watched Blaze for us so Tim and I could go to a night worship service at church. It was so nice. Everyone is so loving and sweet. We got lots of hugs, warm wishes and encouragement. It meant a lot to get such a nice welcome.

Tim’s been experiencing some horrible migraines this week. They ran CT scans and determined there was nothing else wrong, that was a relief. He’s been in a lot of pain and feeling just generally rotten. We’re hoping it was a reaction to a medication. He switched back to something that he had been tolerating well. Hopefully that will be the end of it. He was able to go to work today, though he’s fighting off another headache. Please remember him in your prayers.

Thank you for your continued love and prayers. We appreciate them! We’re so blessed to have you!

Good news December 3, 2009

2009-12-03T14:29:00.000-08:00

Good news! Blaze’s oxygen saturation levels were higher than they have been in a long time when they checked yesterday. All that day he was lethargic and didn’t want to eat, we expected to hear some bad news. When we got to the doctor’s office that afternoon, he was a completely different kid! He ran around, laughed with Dr. Wherry and was a general show off! The stats were great, he was obviously feeling well…and they let us go home! No hospital stay for Blaze! She asked how I felt about things. I explained that I would really rather keep him away from the flu and RSV. She absolutely agreed. His lungs sounded good and looked great from the previous x-ray. She didn’t want to expose him to additional radiation, so we got out of there without an x-ray. You could tell Blaze thought he had pulled off a great trick, leaving the doctor’s office without a shot, x-ray or anything else dreadful. He was quite proud of himself.

His dad and I rejoiced and gave God thanks, then collapsed in exhaustion. It’s amazing how you can go through a stressful day, functioning and thinking you’re handling things okay, then you receive terrific news that you couldn’t even imagine would be possible…and all you can do is sit. Even Blazey was tired early. He turned on the video monitor for his room, climbed into Tim’s lap and laid his head down. It had been a long day. When Blaze is feeling better from his cold we will properly celebrate... drive through a Christmas light display or SOMETHING. Thanks for your prayers. We are grateful for them.

Blaze ill December 2, 2009

2009-12-02T13:46:00.000-08:00

Blaze has a cold right now-runny nose, sniffling, sneezing, small cough, some shortness of breath at times. The doctors are concerned, ordinarily his oxygen saturation levels are on the low side, but because of this cold they are considerably lower. We have an appointment this afternoon with his primary care doctor (yesterday we saw her Physician’s Assistant-who consulted with another physician-who made a bunch of phone calls-including one to his primary care doctor). There is a very good probability that they will want him hospitalized this evening. Our appointment is at 4:30 p.m. They were willing to hospitalize him last night, if I wanted that, but I truly feel they are being just a tad overly cautious. I definitely prefer overly cautious versus them being flippant about it. But, we’ll talk to the cardiologist today and proceed slowly. At the same time they were telling us that hospitalization was an option, they were telling me that if he felt better today, he didn’t have to go in to this appointment at all! No matter what, he’s being seen by someone today! He did test NEGATIVE for the flu (Praise God!) and we did not hear back regarding his chest x-ray, so I am assuming his lungs were clear. They had promised to call if there was a problem. They did say yesterday that he looked like a million bucks, and that if they didn’t know his background or current oxygen stats, they would not be worried. That was good to hear. Even feeling cruddy he is thriving and gaining weight. What a blessing!

We, being Gilzows, have a plan, should he be hospitalized. I think we have everything under control right now, but should we need something, we won’t hesitate to ask! It’s wonderful to have you all behind us in this.

I do want to say that whenever we need an emotional boost, there is always someone to lift us. Yesterday, it was the scheduler at the clinic. I was bringing Blaze in with a “laundry list” of concerns to have checked out. The person who checked us in was kind to direct us to a certain area of the lobby for “non-flu” patients, when I interrupted to explain he was a heart baby, and our doctor doesn’t want him to wait in the lobby at all. She smiled so sweetly and said, “Yes, I remember his name. When I was new here, one of the first calls I made was to arrange an appointment for him in St. Louis, I think. His name stuck with me this whole time. It’s so nice to see him in person.” Then she looked at me and said, “He’s so lucky to have you.” I quickly said we were blessed to have him, but that moment she took to reach out and encourage me, when she definitely didn’t have to…that was precious. And I was grateful!

So, thank you for the prayers and encouragement you give! You will never know how much it means to us.

Please also pray for my cousin, Lori Fox, and her son, Anthony Boley. Anthony is two years old and received a traumatic brain injury last week. If he survives, he may have permanent disabilities from this. It’s a horrible situation, and all we can do is pray. However, prayer, as you know, is the most powerful thing we can do. Blaze is evidence of that. Please join us in lifting up Anthony and his family. My aunt, too, could use your prayers. She has had a stroke and her memory is confused. She has a long way to go! So, please pray, for Betty Fox and my uncle, Charles.

I’ll keep you updated as much as I can, if not through emails, check out the website, http://www.blazegilzow.com/ We’re so blessed to have you!

Joy Gilzow

November 20, 2009

2009-11-20T14:30:00.000-08:00

Blaze had a routine cardiology appointment yesterday (Nov. 19th). It had been 3 months since he had gone to the cardiologist. He had gained FIVE pounds and grown TWO inches during that time. We were all rejoicing over those stats! He had gained over a pound and grown over an inch since his visit to Dr. Wherry’s last month. He's certainly an energetic, thriving little guy!

His echo yesterday seemed to be "off" according to Dr. Tong. Initially he didn't seem to think that the echo was accurate. Then some of the other stats came back--his blood pressure taken in his right arm and right leg showed a difference of 30 points on the top number, last time there was only a 12 point difference. His pulse ox was off, too. After his second surgery the levels had been in the high nineties, yesterday we couldn't get it above 86. The reason for that is because he is growing so much, his oxygen levels will continue go down as he gets bigger due to "his plumbing". That will change for the better after the final surgery. With much deliberation and a discussion with me, Dr. Tong said, "I'm going to chicken out and plan to see him in January." I was relieved to hear it. In the last month or so there have been days where his coloring was just a bit off. This all points to a narrowing of the arc near where they have restructured his blood flow. Tim and I were told by Children's after his first "ballooning" that he would need to come back for another ballooning in that area before his third surgery. The first ballooning took place the night before his second surgery. I'm not sure that we had passed along that information to everyone, because the actual SURGERY was weighing on our minds.

SO! We are not surprised to hear this news, but is still hard info to hear. It's a dose of reality. I have SO enjoyed this time between surgeries. Blaze is doing so very well. He is a bright, clever kid who loves to climb and get into everything. He wants to figure it all out. It's hard to know that he needs to have another procedure done, but we know it's for the best. God gave us this incredible little boy and we have given him back to God. We are so blessed. This is just another step in our journey.

So what happens now? As soon as certain levels reach a particular point, Dr. Tong will turn Blaze back over to the St. Louis Children's Hospital team of doctors. We don't anticipate that happening until after the new year, but if we see that Blaze is struggling-tiring easily, becoming short of breath or his coloring is off, then we will contact Dr. Tong's office and get him in pronto. Meanwhile, we are planning to have an absolutely wonderful Thanksgiving and Christmas with our amazing son.

No worries, but we appreciate your prayer support and encouragement. We will let you know more when we do. Please continue to check www.blazegilzow.com for updates. We love to read comments in the guest book! AND if you have any questions, please don't hesitate to ask us. We really don't mind. We're so blessed to have you!

Joy & Tim

November 17, 2009

2009-11-17T07:39:00.000-08:00

It shocks me that someone who can't say many words can certainly communicate so clearly. Last night Dad was watching Blaze while I went to a MOPS meeting (Mothers Of Preschoolers). Blaze did the sign language sign for "eat". Tim asked if Blaze was hungry, then started heading into the kitchen. Blaze ran ahead of his dad, pulled out the square skillet that we make grilled cheese sandwiches and pancakes on, laid it on the floor in front of the oven and tried to climb up into his high chair. Tim figured he had a 50/50 shot at guessing what Blaze wanted. Ha! So, together they pulled the high chair over, Blaze climbed up into it (needing help to turn around and sit down), Tim gave him some snack foods until the grilled cheese was ready. Blaze then ate the entire thing, sharing only a few bites with Maggie. Too funny!

He now picks out the dvds he wants to watch. He gets into the DVD cabinet and pulls out whatever he wants. He picks out his books, throwing many on the floor until he finds the right one. AND…this weekend he picked out a small plush Mickey Mouse, wearing a snowman sweater and slippers to take home from the Disney store. It was love at first sight. He held it so sweetly and put his face against it…people around us "ooohhhhed" over him. During the ride home he kept rubbing noses with it. Such a sweet memory. Earlier that day we saw a version of Santa walking around a shopping center. I held Blaze while we had our picture taken with him. Santa is smiling and I am cuddling a terrified little boy away from him. Yeesh. I was glad we didn’t pay for the picture! They wanted $20 for a picture of Santa and the live reindeer, but we didn’t do that. I figured a picture of a terrified Blaze is something I could take on my own! He IS quite vocal and expressive about things he doesn't like, too. He, on occasion, will stomp his feet, throw himself down, force tears out of his eyes and follow me around the house doing this, while I ignore it. (I admit I wish I could do the same thing, too, on some days.) Quite often it's a showdown to see if Blaze or Mommy will give in first…much to the amusement of the other adults in the household. Mommy holds her own, knowing we've got to adjust this behavior before he gets older. But it's a challenge. We'll get him there. It's so wonderful that his adorableness outweighs the occasional tantrum!

Besides communicating his desires, Blaze is also into EVERYTHING…literally. He got his fingers pinched in a sock drawer. He got his hand stuck in a drawer that has a small opening, to pull it open with, and he couldn’t figure out how to get it out. He figured out that we open the front door, he could see outside if he stood near the hinges. His screams, coupled with Melissa's after she shut the door and realized his hand was in it, quickly taught them both a lesson…and brought me quickly up the stairs! He climbs up the backs of chairs, he sat on top of Grandma Becky's coffee table when we were visiting, danced on the Wii Fit board while watching "Happy Feet" with Annika. You know when he's been in the kitchen because every pot and pan is out. He climbs to the top of his Little Tikes slide and refuses to come down without holding onto a grown up's finger--even though he lets go of it before hitting the floor! He is just an energetic little boy, and our lives are so much richer because of him. We are truly blessed.

The first weekend of November, we made the trip up to Jeff City and Columbia. Blaze got to spend time with Grandma Becky and play with her dog Buddy. He played with his cousin Annika and sweetly interacted with Mattias who is six months younger than Blaze. It’s amazing what a difference those 6 months make! We got some adorable pictures of Blazey and his cousins. It was so nice to see them.

Thanks for your continued prayers!

November 5, 2009

2009-11-05T15:28:00.000-08:00

Blaze got his H1N1 shot today! We really struggled with this decision to vaccinate him. I called all of our health advisors and doctors…and they all wanted him to get the shot. I really tried to get some health professional to disagree with our doctor, cardiologist, the flu hotline tech and our old home-health nurse…and they all agreed the shot was a necessity for Blaze. I had some additional concern because our health department had limited shots without thirmosal (the mercury based preservative) and I really didn't want him to get that. My philosophy is: if a school can be evacuated due to mercury, it should not be put in anyone's bloodstream. Thankfully he received the mercury free dose, which did make me feel better about things. We were concerned because of his reaction to his other vaccinations. He handled the actual shot pretty well, though. They gave him a coupon for a free small cone from McDonald's. Blaze was thrilled to eat ice cream and we were happy that something distracted him from his anger. He was very indignant about the shot. He was very happy when we got back home, though. The ice cream must have worked!

Blaze isn't talking as much as we would like him to speak. Last night we were expressing our concern to the Parents As Teachers lady who was at our home evaluating him. Blaze got some puzzle pieces from the table and took them over to his daddy. Tim said, "Thank you, Buddy!" and Blaze, the show off who likes to prove us wrong said, "Welcome!" He repeated it several times to our shock and amazement. The child had never said that word before and chose that moment to display his hidden speaking ability. It was really cute. He wakes up now and turns on his classical music on his mobile and sings to it. What a beautiful sound to wake up to! He's also been making a sigh of contentment after he drinks his juice and says "Mmm…." while he eats. He is a funny, delightful kid.

Blaze had a terrific Halloween. We should have the pictures on this site soon, but if not, you can check out Tim's Facebook Account. Both Blaze and Tim were pirates this year. Tim's co-workers felt that Blaze looked like a sophisticated pirate who was successful in his journeys and Tim looked like he had gone to drink! Too funny!!! We had fun taking him trick or treating. He made out with quite a haul!!! Thank you to all who generously handed your candy to a pirate. He was very happy to get it!

My mom's eye surgery went well. There were some administrative mix ups and the surgery wasn't even scheduled when we showed up there. Thankfully it all worked out and things seemed to be successful. She doesn't have much vision in that eye yet, but it should clear up soon! We were grateful for a safe trip and stay in KC.

Today we were reminiscing about the doctor's appointment that shook us to the core and brought us to our knees. When they diagnosed Blazes heart condition they told us that this condition often comes with developmental disabilities. We are so blessed to have our healthy, happy boy! He is thriving, living life to the fullest and filling our days with laughter. God is so good. Thank you for your prayers. We are so grateful for them.

PS-Please sign our guest book!! We would love to hear from you!

October 27, 2009

2009-10-27T16:12:00.000-07:00

Blaze had his shots (MMR, Chicken Pox and Seasonal Flu) on Friday. We were told that these would be terrible on him, but this has been NOTHING like the scare we had on the last ones, Praise God! He does seem to be coming down with a cold. He has a runny nose and a very slight fever. Hopefully it will quickly run its course.

Sunday morning I was getting Blaze's clothes out of his closet and I heard a funny noise. I realized I was hearing climbing on the stairs. Maggie and Blaze had been chasing each other and decided to take the game upstairs. I flew out of the room and snagged our boy who was quietly trying to crawl back down the stairs without me noticing and Maggie knowing where he was. I laughed as he tried to hide from her on the stairs, by lowering his head under the height of the step. He was, of course, lower than the dog, who could perfectly see him, but she waited patiently for him to rise up, before acting like she was going to lick him, then run away again-in the opposite direction. Then they did a version of peek-a-boo, around the corners of the stairwell. They were playing and having such a great time. I love it when they interact together. I gave him a few minutes, then got them both into his room, in order to get him ready for the day. The stinker tried to climb up the door! He put his feet onto the door, grabbed the frame and attempted to climb up the closed door. I couldn’t believe it. I let him try. There was no reason to stop him, obviously he couldn't get very far, but I admired the determination and effort. We'll need to learn how to harness that energy someday into something he can make a difference in. He's an inspiration to his momma!

We took Blaze to the Pumpkin Patch on Saturday. He had fun rolling pumpkins around. We took some great pictures and saw some friends we hadn't seen in a long time. We had a nice time.

My mom is having a much needed and greatly anticipated eye surgery on Thursday! I will go to Nevada Wednesday night and stay with her until she's released and at home on Friday morning. The surgery will be in KC. We appreciate your prayers! We have high expectations and hopes for this surgery.

Please remember our family in your prayers. Things are catching up to us emotionally and we appreciate your love and support.

Uh-Oh!

2009-10-20T15:56:00.000-07:00

"Ooohhhh" and "Uh-Oh!" seem to be Blaze’s phrases right now. This weekend, for the first time, Blaze looked under the hood of a car. "Oooohhhhhh" was what he sighed when he saw all the stuff around the motor. I showed him how to check the oil-that was the only thing I was confident in showing him without fear of messing something up! Tim worked on the car all weekend and into this week, so Blaze has been fascinated with tools this week. It’s been fun. Last night he grabbed a pair of pliers ("Squeeze" if you watch "Handy Mandy".) He enjoyed getting his hands on Daddy's tools. He's also learned that if he says "Uh-Oh!" when he drops something, he's more likely to get the object back…like the cup of apple juice he threw off his high chair tray. It's amazing how young this starts. He'll act like it's an accident, or he can't hear you when you tell him not to drop food off his tray to Maggie, who is begging below. I love his willingness to share, but it's an effort to get Blaze to eat Blaze's food! He has it in his head that saying "Uh-Oh!" makes it alright. It is rather charming. We have our hands full with this one!

He is such a fun child, though. I had no idea what a blessing Blaze would be to us. He's just a delight. Our plan is to take him over to the Pumpkin Patch near our home to pick out a pumpkin! I am so excited!! Before Blaze I wanted to go, it looked like such a fun place. Now we'll look like we belong a bit more, with a child to take with us.

Last night I struggled to sleep when I woke up in the night. After praying things through, I realized I hadn't been Praising God the way I should lately. Once I praised Him I began counting my blessings. The first 40 had things to do with Tim. I am so incredibly blessed. Thank you for praying us through and helping us throughout Blaze's journey and through our latest sadness. We are blessed to have you in our lives!

Blaze the Dragon

2009-10-16T12:41:00.000-07:00

Blaze has the funniest trait, it’s a dragon imitation! We gave him some play money in one of my old wallets to play with, mostly to keep him from emptying out ours, I think. HA! There’s nothing like looking over and seeing your wallet, with everything scattered out on the floor…so this, we thought, would be a good distraction. Blaze loves to empty out his wallet with the play money, pile it all on the floor and sit on top of it. Tim assures me this is what dragons do, they hoard their loot underneath them so no one else can get to it. He often does this with his stuffed animals, too. The whole thing just makes me laugh. He’s such a fun kid.

Melissa had left a drink carrier from Sonic on the coffee table over night. Blaze was excited to discover it this morning. I showed him how to put his cup in it, and he began to carry it around, a bit awkwardly. I explained to him and demonstrated how to hold the carrier, putting my hand in the handle. He immediately began to hold it the way it was designed. He had the best time swinging it back and forth, without losing his cup. Too funny.

Blaze and Maggie have been getting along fabulously lately. She chases him, he chases her. He gives her hugs, she licks his face. It’s been fun. Finally they are bonding. Maggie has always tolerated Blaze, now she seems to be having fun with him.

I went to a “Get Motivated” seminar yesterday at MSU in Springfield. They had many fabulous speakers. Most talked about the importance of faith in business and the plan of salvation was given. I was very impressed. It was a long day, but worth it. I’m getting more energy back, though today I am on the tired side of things. That might have more to do with the constant cloudiness of the weather more than our situation. I’m hoping to take a long nap sometime this weekend.

I remember last year, buying “Baby’s 1st Halloween” socks and a little orange outfit, complete with matching hat. We’re having a pirate this year in our house for Halloween, fake musket and all. It’s funny, isn’t it, how fast things change? Life can change in an instant, or it can be a slow progressive change-like the difference in a child over a year. To think our little baby is already a little boy…wow. He is growing and thriving and delighting in life. To know what it could have been…we revel in what is. Thanks for your prayers and encouragement. We are so blessed.

2009-10-13T11:23:00.001-07:00

Blaze-what can I say!?! We have been going through a pretty rough time lately, and Blaze is a bright spot and a joy to us. He is such a funny kid, full of life and energy. I am excited to say that he has grown lately and he’s in 18 month clothes. EVEN 18 month pants. Blaze has always had a problem keeping his pants up. They’re too long or he crawls out of them or he sucks in his belly and watches them flop to the floor. BUT his waist is now big enough that some (not all) 18 month pants actually fit him now!!!! Some we have to roll up…but it’s getting much better. Overalls are still our friends, but it’s nice to know that he’s catching up! Considering he’s not quite 15 months old and he is a good fit in most 18 month clothes…he is doing well! He loves going outside on walks, too. We are constantly on the look-out for shoes on clearance. It’s my belief it must be some code that boy shoes can’t go on sale and he is growing so fast, I’m not going to spend much on his shoes. His favorites are hiking boots. Too funny! He has a pair that are still too big for him that we bought ahead of time, and they are still connected by an elastic band. He loves playing with those…and eating them. He is teething again…for the last time with his baby teeth…and apparently eating shoes makes him feel better. Ugh!

Blaze loves his CATERPILLAR dump truck that he can ride around the house. He’s finally figured out he can ride it. He had it taken away for an extended period when he decided he’d rather use it as a skateboard, but he is starting to ride it the way he should. He drums out a beat all the time, too! His daddy keeps telling him what good friends Blaze will be with Uncle Paul. Paul, Tim’s oldest brother, was a drummer and has a lot of skateboard experience. I expect they will have lots of fun together.

Tim took Blaze to a store this weekend. He came back with a “Cars” winter coat and pictures of Blaze trying on motorcycle helmets! Funny pics. We have some photos to add to the website soon, including Blaze trying on his Halloween costume. Fun stuff!

Blaze has also been on his climbing kick. It’s like living in a house with Spider-Man. Ha! You just never know where you’ll find him. He moves things over in order to stand on them and reach up higher. Now he has figured out how to use a hula hoop to knock things down that he wants to get, but can’t reach on his own. He’s brought “baby proofing” to a whole new level. I’m a little nervous about Christmas decorations. Another favorite thing of his to do, is to throw plastic balls down the stairs and watch them fall. He carefully knocks them underneath the gate, then tries to climb over the gate to get a better look as they bounce down. I am grateful he can entertain himself!

He is definitely our bright spot. Blaze’s Aunt Carla lost her brother, Craig Hendrickson, on the last Wednesday of September. Tim was on his way to Jeff City that Saturday when he learned that his grandmother, Jeane Gilzow, had a stroke and was in Cox. She is, thankfully, doing much better now! My mom came to stay with us for a week or so, we ended up taking her home a little later than that. While she was here she lost her vision totally in one eye. It is impossible for her to read a book or drive right now, which is beyond frustrating for her. She has an appointment on Wednesday, hopefully we’ll learn more then. In the midst of this, we went through a miscarriage. We had gone in for an ultrasound on Monday, September 28th, and learned there was no heart beat from our tiny one. Yes, it’s common, yes women go through this all the time, but it was heartbreaking. There’s some sad irony in the fact that Blaze’s heart was what we prayed and cried over and that the lack of heart-tones was how we knew we had lost this one. It was devastating. But, we are hanging in there. Physically, I have miscarried now and I am feeling much better-the first trimester of pregnancy just totally wipes me out, energy wise. Emotionally we’re dealing really well. We have a Christian Counselor that we went to when we learned of Blaze’s diagnosis and we’re going back to her now. Things are okay, but we would love your prayers. Thank you for those!

Hopefully in the next week or two we will go to Springfield and celebrate our anniversary! We were married 5 years on October 2nd! It feels like longer! HA!

Blaze is such a blessing to us, and you are, too! Thank you for your continued prayers and support. Despite all this sadness and uncertainty we have SO MUCH to be thankful for.

September 25, 2009 Late Night with the Blackerbys

2009-09-25T13:09:00.000-07:00

Last night was the fund raising dinner for Options Pregnancy Center at Chateau on the Lake. It was a beautiful night, an amazing meal and lots of good feelings to spread around. Blaze, of course, could not come to this event. He got to spend the evening with Joe, Summer and Taylor Blackerby. "Uncle" Joe and "Aunt" Summer had been wanting to watch Blaze. Taylor, their daughter, was just dying to hold him. We weren't sure how the evening was going to go, Blaze doesn't normally spend the evening with other people, and rarely that late in the evening. He hasn't spent much time at all with the Blackerbys so Mom and Dad were curious to see what would happen. We got there and Blaze was so excited to see they had dogs. He merely waved good-bye to us when we left. Typically he goes to sleep around 7 p.m., last night he stayed up until 9:50 p.m. and we got there at 10. Thankfully, he was a little prince last night. He was sweet and played and he even let Taylor hold him for awhile. We were thrilled he was so good! Not that he's not normally an excellent child, it's just nice when you're not sure how he'll act and he is super good.

He mostly slept through us putting him into the car, then into bed. He woke up at 2 this morning, I think he was just confused how he could be in his own bed and wanted reassurance we were there. Melissa reports that he's very sleepy and slightly on the grumpy side this morning. He's taking a long nap, so hopefully he'll get himself readjusted. It's hard when your parents make you party all night!

Please pray for Craig Hendrickson. Craig is in his late twenties and has the same cancer that Tim recovered from. Unfortunately, Craig has been fighting this cancer on and off for several years now. He is currently at Barnes and we believe he is currently on a ventilator. He is having complications breathing and things look really grim right now. For those of you who don't know Craig, Craig is Carla's brother. Carla is married to Josh (Tim's brother.) I think it's just amazing that Josh and Carla both have brothers who have had this cancer. So, long story short we share a niece with Craig and his wife, Gwen. Please pray for his whole family, they've been in this battle a long time and could use some encouragement.

Thank you for your continued prayers, I am constantly amazed by how blessed we are.

September 24, 2009 Blaze, Blaze Everywhere

2009-09-24T14:26:00.000-07:00

We have a runner. He's not just jogging, he's full-fledged out and out running through the house now. Often behind the dog or after one of us saying "Get ya, get ya get ya". It's so much fun. We have a very active little boy on our hands. It's hard to believe how much change a person goes through in a year.

Blaze has his teeth that are in the "canine" spot coming in. They finally broke through earlier in the week. I think he is close to having a complete set of baby teeth now. He's getting heavy, too. If you leave him on one arm for a brief period of time, he'll wear it out! I don't know if he's hit a growth spurt or what the deal is, but recently he's gotten heavier. It's terrific, though. We'd like to see him go up a bit higher on the weight chart. I haven't checked the scale, but I sure feel it!

I got to go to my first MOPS meeting this week. I highly recommend any mom of preschoolers to find a group and go. Two hours to yourself while your child can learn something in a safe environment. It's a great idea and very helpful.

We continue to be so grateful for all our blessings!

September18, 2009

2009-09-18T13:36:00.000-07:00

Blaze is finally feeling better. He's had a rotten cold this week, plus some medication issues, but he is full of happiness and energy today. Daddy went in and got him this morning when he woke up. It was so sweet. Tim brought Blaze into our room, and they looked and smiled at each other, almost mirroring the expression. They were both obviously happy to see each other this morning. Blaze mimicks Tim's expressions a lot now. It's so fun.

I don't have much to say this week. We didn't take him out after his big weekend. He walks around the neighborhood, but he hasn't been anywhere to socialize. We're nervous about the flu, and praying for wisdom with the situation. We're doing what's called "social distancing." I didn't realize there was a term for this, but I went to the flu websites yesterday and there it was! We haven't been told to do this, we're just being careful, especially with him getting colds so easily lately. Poor fella!

We do have a praise. Jake Lawson is cancer free! Hooray!! He still has a long way to go with some other issues, but this is HUGE!!! Praise God!!! We are celebrating that good news today

Blaze "Homecoming" Sept.13, 2009

2009-09-14T14:42:00.000-07:00

Blaze went with me to Milo Baptist Church's annual homecoming. Milo is the church that my dad was pastor of from the time I was born until I was 13 years old. So many of the sweet ladies are still there. The dinner even brought back memories, I had Miss Ruby's spanish rice and Miss Berniece's chocolate meruinge pie. Blaze is no dummy. He LOVED the chocolate pie. He was pretty onery during the preaching and got taken out during both services. But, I have to say he was a charmer all weekend. He attempted to climb up my grandma's television set, he dragged a cooler around her house and explored everything he could at her house. He tried singing with the congregational hymns and special music. He was so LOUD as he hummed along. Finally he started strumming a finger across his lips to make a funnier noise. My mother, grandmother and niece laughed and laughed. I was ready to crawl under the nearest pew. It was really funny, though.

We stayed with my mom Saturday night, then came home on Sunday. We did have a nice time. My younger brother was home for the weekend from grad school. It was nice to see him. Blaze sure did his best to charm Uncle John. I think he was successful at it.

Blaze got a late birthday present. It's a cute shirt and an Elmo video. We had yet to introduce Blaze to Elmo or Sesame Street. After watching his reaction to this video, we are having him watch Sesame Street now. He absolutely LOVED it. I can't wait to return the favor when the giver has children someday. Ha!

Blaze is feeling great and doing really well. Thank you for continuing to pray for him. I do have a request for you. Jake Lawson, "Baby Jake" from our first hospital visit, is having some other difficulties right now. It's hard to explain, but it seems like his heart transplant has lead to an infection, and this infection is a sign of cancer. They have caught this fairly early. The poor fellow has spent both of his birthdays in the hospital. He'll have some rather extensive tests later this week. Please keep them in your prayers. Also, I had asked you to pray for Andrew and Rebecca who were expecting Drew this past spring. I learned last week that Drew had passed away. They had 7 and a half weeks with him, his lungs just weren't strong enough for him to have the surgery he needed. Thankfully both of these families are strong believers. Rebecca has peace through all this. They have a 2 year old daughter named Tori and she has been a blessing throughout this rough time. Please just keep them in your prayers, I know somedays are rougher than others. There's also the Ives family that can use your prayers. Unless a miracle happens, they will lose their daughter soon. Their lives have been put on hold for over a year now, in a horrible state of limbo. The mom, Tasha, has been so strong throughout this, but things are getting to her now. Please just pray for strength and peace. Thank you for your continued prayers and support. You mean more to us than you'll ever know.

September 11, 2009 Blaze--Baby no more

2009-09-11T14:23:00.000-07:00

Our Blaze isn't a baby anymore, he's a little boy now! He's refusing bottles, cuddling on special occasions only, climbing on anything he possible can and communicating with a few words and sign language. It's amazing to see the difference one month can bring. Recently he started sleeping in until 6:30 during the week and 7:30 on weekends! He previously would wake up anywhere from 5:45 -6:15 a.m. and that was Mommy/Blaze cuddle time! I would get him up, give him a bottle and we'd snuggle until Melissa took over at 6:30. There would be tears and shrieking (his, not mine) when I would leave him to go downstairs and get ready for the day. Not anymore!! In the morning now he wakes up rarin' to go. He explores his room until Melissa comes in, then he goes upstairs to let Maggie out. No tears, no struggles, he's ready to go up and play. He is growing taller, getting stronger, gaining weight and getting braver. No fear whatsoever. And he's STRONG. He can do a chin-up off the side of our table. By holding onto the side, he can pull himself up high enough that his chin is above the table and his feet are off the floor. It's jaw-dropping the first time you see it. We are so blessed. We know of so many families whose children we follow from their websites who are struggling right now. It's almost overwhelming at times. We don't understand why God allows our son to thrive and do so well, while other children with similar conditions struggle so much...but we are so thankful and give God the glory. Once again, we're going to have to be a bit cautious as the flu has hit our area. Several elementary aged school kids have been hit with the swine flu. Because this flu could literally kill him and we're just not going to take the risk. He is still getting to go to stores--we wipe down the carts and put his seat cover on them, which helps a lot. He rarely goes to a restaurant but when he does we, once again, wipe everything down. Our biggest concession to the swine flu has been pulling him from the church nursery. I hate that. It saddens and frustrates me, but we just can't risk it right now. They are fabulous in how they clean and provide a safe environment, but any time a bunch of little ones are together, things get shared. The last couple of times he's gone, he's brought a cold home...the last one he shared with all of us, it was awful. We are so grateful for such a wonderful and loving church family and the beautiful facility they provide for Blaze to go to...but we need to wait awhile before he can go back. Thank you for your understanding support. We look forward to the day where we don't have to be quite so cautious. Thank you for your continued prayers. We're so blessed to have you in our lives.

August 27, 2009

2009-08-27T09:48:00.000-07:00

We have been having an absolute fun time with Blaze. He's so funny and charming. Just a delightful kid to be around. We are so blessed.

Last week we celebrated Melissa's 21st birthday and my mom's birthday...I won't say how old she is. (Grandma Cathy's note: Thank you Joy for being discreet, but it's no secret, I'm 60!) Blaze went to the Landing and walked around for the first time. He was so proud of himself. He went to the Showboat and really enjoyed the music and dancing. He saw one dog "talk" before crashing. It was really past his bedtime. We went to Springfield and had lunch with most of my family. Sunday he went to Taylor's birthday party, he had a fun time watching "Uncle Chris" Stanley do some magic. That night he went back to the church nursery and got to stay up late again! It was a fun week.

This week has been a little tougher. Blaze has a cold or allergies right now. He is feeling really cruddy. I'm hoping this will pass soon. His nose is a never ending spigot at this point. Poor little fellow!

Even in the fussiness of a cold, I am so grateful for how blessed we are. Blaze continues to grow and thrive...we have had such an easy journey in all of this. Today my heart is very heavy. When we were at Children's for Blaze's birth and first surgery, there was a little guy there named Jake Lawson. We knew about Jake before going to St. Louis because he has some family ties in Forsyth. Jake has the same condition as Blaze, but his heart wasn't as strong. Jake was there waiting for a heart transplant. Shortly after we left, he did get a new heart! They've had a wonderful year. Today is Jake's 2nd birthday. He is such a strong fighter. His whole family exhibits courage. His mom was someone who would come by and check on us to see how we were handling things. She exudes grace under pressure and is a loving, strong, caring individual. Today, on his 2nd birthday, he is having some tests done. This gets very complicated, but boiled down: Jake has a form of mono, which is from a very bad infection. This infection could be linked to a type of cancer. He is feeling really awful, he's back at Children's Hospital and they are waiting for some test results. Please pray for Jake and the entire Lawson family. In complete honesty, things do not look good for Jake. If we were just looking at this situation, we wouldn't give him much hope. Thankfully, we know there's more to this. The Lawsons are trusting God, the Great Physician, to help Jake. He is the only one who can bring Jake through this. We know God is in control. Please pray.

Thanks for your love and support!

Summer Fun August11, 2009

2009-08-11T15:51:00.000-07:00

Blaze continues to thrive and do well! He is running now, climbing on everything, constantly getting bumps and scrapes, and just being a little boy in general. It's incredible to watch him. Last night Patricia with Parents As Teachers came over. She showed us some activities to do with Blaze to help his fine motor skill development. He dropped poker chips into a slotted canister. He LOVED the activity. She showed him a flip book, and he immediately moved the flaps up as he discovered them...we’ve been doing flap books for weeks now. On the 12-14 month checklist, only stacking is giving him frustration. He's close to getting it down. He'll have his 1 year assessment the last day of the month.

Sunday I had an animal picture book and I pointed to a picture and said "Bear"...Blaze growled back to me. I was shocked. He knew tiger and lion sounds, too. This is such a fun stage.

He's also very aware of our dog Maggie and the attention she gets. If she is on someone's lap, Blaze must be there, too. When we realized what was happening, we started holding Blaze's large Tigger to see what he would do. Sure enough, he comes over and climbs on the lap of the person holding Tigger. Then Blaze gives Tigger a huge hug before knocking him to the floor. Jealous, much?

We also started a sign language DVD program. Blaze so far, hasn’t learned any of it yet, but Tim and I have learned "Bird, Diaper, Food, More, Hurt, Cereal, Banana, Dog, Cat, Potty, Mom, Dad, Grandma, Grandpa, Baby, Drink" you know, the essentials. Apparently he loves the "diaper dance" song. He's such a funny kid.

Saturday we took Blaze to the Moscow Circus at Yakov's Theatre. It is a very fun show, full of crazy antics, a love story and very kid friendly. Prior to the show we took our lives in our hands and took the little golf cart shuttle to the theater from the parking lot. I was so grateful Tim was holding Blaze. I thought I was going to fall out of the bench at any moment. Next we walked toward the theater, where a ginormous replica of Yakov's head talks to visitors, Blaze was not impressed. Already edgy from the crazy ride and the ginormous talking head, a man on stilts came out of the door to talk to us. Blaze just screamed and screamed. So we get him inside. He's clinging to his daddy for safety as I go up and get the tickets. Two women with beautiful costumes made up to look like Russian dolls were putting stamps on children's faces. Tim asked Blaze if he wanted a heart on his face, the women heard Tim, one looked at Blaze and he immediately cried. She was horrified. We finally just took him away from the crowd a bit and things worked out much better. After a fun opening, the original guy on stilts came out on stage WITHOUT his stilts on and Blaze recognized him and clung to Dad again. I was amazed that Blaze recognized his face! He must really study people. He said "OOoohhh!!!" when a guy made all sorts of gorgeous bubbles on stage. He cringed when fire came out of nowhere (as my mom puts it, that just shows good sense) and he was mesmerized when they floated above the crowd. It was definitely worth going to. This was Blazey's second Branson show. He also saw Peter Pan this spring. He was so very good. Such a fun guy to take places! While his grandma was here, he went out to eat a few times, and was such a good kid every time. He wins people over.

Things are going well in the Gilzow household. Tim is feeling better, Blaze is feeling better-though 3 teeth have just broken through and are making it challenging to eat, Melissa starts her new evening job on her 21st birthday (8/18) and I'm doing well. My mom came down and spent a lot of time with us so Melissa could job search. Having her here was such a blessing.

This summer has been so fun for Blaze--he's gone swimming, celebrated his birthday twice, he attended a large gathering of Tim's friends and their kids, he's been going to church and has gotten to spend time with all of his grandparents! WOW!!! Blaze had a fantastic birthday party at the church. Thank you to all who helped make this event special! We are so blessed.

I was saddened to learn last week that one of Blaze's roommates at St. Louis Children’s Hospital had passed away. Every day is so precious, truly a gift. Please keep us in your prayers! We appreciate them. Please also remember a newborn, Haleigh Kricket Ridgeway, a granddaughter of a former co-worker, who was born with a stage 4 brain tumor. She's at St. Jude’s now receiving chemo treatments. Please also remember Skyler Sanders, Sydney Ives and Joel Seabrook. God is so good! We're trusting each of these young ones in His precious and capable hands.

Love to you from the Gilzows!

Blaze's First Birthday!

2009-07-21T09:53:00.000-07:00

Blaze had a terrific first birthday! We all met for lunch in Forsyth, where Blaze got a kid's meal. For a special birthday treat he had chicken nuggets! He loved them. Grandma Cathy spent the week with us and was there for Blazey's special day. She was wrapping his gifts at the coffee table, Melissa was sitting at the other end of the table, I was on the couch, when suddenly Blaze walked across the coffee table, waving at me as he toddled by. We were stunned. He had stepped onto one of his wrapped gifts and used it as a stepstool, then easily walked across. Grandma snagged him as he went past her. It was just a sign of things to come, I’m sure. Blaze has been playing with his new toys: a fisher-price little people pirate ship, a toy camera (both from Mom and Dad), 4 light up rubber duckies (from Melissa) and a orange and blue dump truck (from Grandma). He's so good about playing with everything as he pulls it out of the toy box.
That night we gave Blaze shells and cheese and let him feed himself, then we lit the special birthday candle and put it onto a cute train cake. He had his own little cake he ate that night. We let him just dive into it--I finally took it away, afraid he would make himself sick. I’ve heard of other 1 year olds who refused to touch their cake...our child was not one of those. He had so much fun. We got some terrific pictures we will put onto the site soon!

Blaze is walking now. He still crawls when he wants to go really fast and tries to run often. His crawl turns into a walk, crawl thing...I’ve never seen anyone else do it like this...most of the time. He is so fun to watch!

His molars are still making life miserable for him, though. Please pray that those break through soon!

Saturday is our "big" celebration! Please join us if you can! It will be from 1 p.m.-3 p.m. at First Baptist Church in Forsyth.

We love you all!

Celebrating Blaze's Birthday

2009-07-09T12:36:00.000-07:00

We are celebrating Blaze's 1st birthday! We have had an incredible 18 months. Throughout Blaze's diagnosis, his birth, the surgeries and homecomings, you have been so faithful to encourage, support and pray for us. Blaze was 9 months old before we had to buy diapers for him and 10 months old before we had to buy wipes! There were visits to St. Louis, meals when we came home, furniture for his room, tons of clothes, generous showers and sweet emails on tough days. More importantly, there were prayers. Tim & I have no doubt that we would not have Blaze with us today, if God had not heard and answered your prayers. Blaze is not merely alive today, he is thriving, growing rapidly and sprouting teeth as he takes wobbly steps on his own. We want to say "thank you". Please join us in celebrating Blaze's life and God's graciousness on July 25th at First Baptist Church in Forsyth, from 1 p.m.-3 p.m. This is our "thank you" to you--no gifts, please.

Wow! We are so blessed! July 8, 2009

2009-07-08T11:43:00.000-07:00

I had an interesting call last night. It was a worker from St. Louis Children's Hospital. During our last stay, they asked if we would participate in several studies. We said yes to most of them. Last night was a follow-up on one I consider to be one of the most vital--how our family handled Blaze's condition. I was asked a myriad of questions, most having to do with how our family dealt with having a child with a "serious condition." Did I feel it affected his friendships (No-he seems to want to gnaw on all the kids in the nursery while he is teething and no one even holds THAT against him.) Did I feel his life expectancy was hampered? Was our child's condition the most important thing in our lives? How worried was I over the future as it related to Blaze's condition? THEN I was asked if I had a "partner" that lived in our home with me and was helping to raise Blaze. The "yes" response lead to a new line of questioning-- Did my partner and I agree on how our child's condition should be treated? Did my partner and I fight a lot over our child's condition? Was our family unit suffering because we had a child with a serious health condition? On and on it went.

I had a major realization when I hung off the phone... "I am so blessed!" Blaze is doing well. He is healthy and thriving. He is ahead of most of his milestones. It's just amazing. One of the questions asked if we felt we were on a roller coaster...well, no, not now. Things are so steady. Blaze is such a great kid. I can't imagine him in any other way. Do we have to be a bit more organized? Yes, somewhat. We have medicine times and keeping prescriptions filled, that sort of thing, but I don't consider that a hardship. I am so proud of Blaze, he is sincerely doing well.

The other way we're blessed is in our family unit. Tim & I are a team in this. That does not mean things are always easy, but we work together for Blaze. Decisions concerning Blaze's medical care come easily for us. I believe it is the prayers for wisdom people are praying for us. We want the best for him and we're willing to do whatever we can to do that. One of the questions was how heavily Blaze's condition weighs on us. It really doesn't. I did sign him up for life insurance that he's guaranteed to have through the age of 25, after that he can sign up without having to address health questions. Would I have done that for a kid without a condition? I don’t know. This worked out well for our situation, so we did it. I think that's a normal parental thing to do.

I hung up the phone realizing that so many parents are struggling and how phenomenal an experience we are having. Thank you so much for your prayers. We cling onto His grace and are so grateful for His blessings.

Joy

Blaze's First 4th of July

2009-07-06T14:51:00.000-07:00

Blaze had a terrific 4th of July. Unfortunately, he couldn’t stay up to see the fireworks. He refused to take a nap the afternoon of the 4th and could not stay awake for the big show. Somehow he slept through all the noise and chaos! What a sleeper!!! Prior to sleeping, he played hard with his cousins Annika and Audrey, who are both 2 years old. Mattias is Blaze's younger cousin (6 months old) who was still too little to really play with him. Blaze was not happy to share Mom or Dad with Mattias. We do have some cute pictures of them together. I was delighted with how sweet the girls were with Blaze. They gave hugs and shared toys. It was a good day.

We had gone to Jefferson City on the evening of the 2nd to stay with Tim's parents. Blaze had a good time with Grandpa and Grandma. He liked their dog, Buddy, too. This was the first time we took Maggie and Blaze on a car trip together, and it went very smoothly. Blazey was a bit grumpy in the car, but once he went to sleep it was much better. It was a lot of fun and we had a pleasant visit.

Tim and I had a fun time taking photos of fireworks. We found out we had a fireworks setting on our camera. Fun stuff! It was so nice to see the Gilzow family again. It had been awhile.

The Toddler June 22, 2009

2009-06-22T14:18:00.000-07:00

Wow! We are having quite a time with our teething little guy. He already has the first 10 teeth up front in...now he has one molar and 3 more trying to break through. This has been our most challenging teething experience to date. Poor little guy! I'm hoping this eases up a little bit for him soon. He is quite miserable right now.

There is nothing like the resilience of a toddler, though. Even feeling cruddy this weekend, Blaze managed to: take a couple of steps on his own, give himself a black eye, cut his leg, bruise his head (twice), bounce balls of various sizes, put two halves of a toy together (right color and shape), play peek-a-boo by going around the chair to "surprise" me, two times used words to communicate what he wanted and invented a new game where he takes a toy and wears it over his nose. The last one delighted him and I have several funny pictures of my boy, smiling enormously behind a circle shape that he holds in his mouth and it covers up his nose. He thinks it is hilarious...and because he thinks it is so funny, it makes me laugh, too. He decided to stand up on his own and while he had a toy in each hand. He lost his balance and fell on one of the toys, giving himself a black eye. That was a first for us. It is just a small bruise under his eye, but it still made the baby book! Saturday he had gotten his breakfast all over himself and I started to take him down for a bath while Mickey Mouse Clubhouse was on. The very last thing on every episode is the hot dog song and they do the hot dog dance. I did not realize how much Blaze loves to do the dance, until I started to take him downstairs. He looked at me, pointed to the t.v. and said "Dog!" Of course I waited until the song was over to take him down. I was so surprised. On Sunday I was fixing lunch and Blaze wanted me to pay attention to him. When fussing didn't work, he crawled across the floor to me, pulled himself up on his feet, walked around until he was between me and the counter, and patted my leg while saying "A-Boo! A-Boo!" That's what he says when we play Peek-A-Boo. He obviously wanted me to look at him. Once again using his words was rewarded. I picked him up and he watched me fix lunch one handed. Who knew that 11 months of age would be such a fun and active time?!?

Father's Day we had a full day planned. Unfortunately, Tim got sick that morning and we stayed home. Thankfully, we had gone to see Yakov the day before, so the whole weekend wasn't lost. It was disappointing. We'll have dinner with Tim's grandparents and swim at their pool another day. I can't say what we did for Tim--the grandpas might read it and guess what their gifts are, too! We'll fill you in another time.

We are constantly amazed over our little guy. Every day is an adventure. We are so incredibly blessed. Sometimes Tim & I wonder together how much energy Blaze would have with a whole heart, because he is going full speed with his. It is simply amazing.

Thanks for checking in with us! We'd love to hear from you.

Blaze in Bloom June 18, 2009

2009-06-18T14:27:00.000-07:00

Blaze continues to grow, thrive and generally amaze us all! He weighs in at 18 lbs. 7 oz, which is above the 10th percentile for his age. He's also above the 10th percentile for his height! He is trying so hard to walk on his own, but he gets too excited and loses balance. Several times today he has pushed away from Melissa to stand on his own and attempted to take a step. He is so close to walking alone! Our house will never be the same!

Blaze's favorite thing in the entire world right now is Dad. Tim walks into the house and Blaze lights up like the sun. He clings to Dad, has to help him put on his shoes and together they play the evening away. Blaze was feeling cruddy on Monday, Melissa and I were told by the doctor to monitor his food intake--clear liquids only until that evening. Blaze was hungry and frustrated by this development. I was changing Blazey's diaper when Tim walked in the door. I had to tackle my child to keep him from flying off the changing station. As soon as Tim picked him up, Blaze looked into his eyes, then collapsed his body against Dad's shoulders and said, "Dad-dy" in a dramatic sigh. He says "Da Da Da" all the time, but it was so sweet to hear that precious word and just see Blaze's relief that Dad was home. Tim went over to the pot of mashed potatoes I had fixed for Blaze. Tim stuck his finger in the pot and licked some off his finger. Blaze saw there was some on Tim's finger and shoved Tim’s finger into his mouth. Obviously the child was ready to eat! He's been feeling great since then.

This is such a precious time. Father's Day used to be so hard for me, after my dad passed away. My grandpa had died less than three years before that, so I was left without any "fathers" in my life until I married into Tim's family. Usually there is still some sadness as the day approaches. I cannot tell you how excited I am about Father's Day this year! Blaze's adoration of his dad is such an amazing thing to see and it makes this time just especially sweet. We're looking forward to a terrific Father's Day!

We got to have a small part in the worship service last week. It was so wonderful to share the testimony of Blaze's life, even in a 6 second spot. I keep thinking about what we were doing this time last year and how things are different now. God is so good!

As Blaze's birthday rapidly approaches, we're preparing for the big day. We'll have a big announcement regarding his party soon!

Thank you so much for your love and support over this time!

Joy Gilzow

Big weekend June 1, 2009

2009-06-01T14:24:00.000-07:00

WOW! Blaze sure had a big weekend. Friday evening we went to dinner, then to Treasure Lake resort with Tim's grandparents. We met them at a buffet. Melissa had fed Blaze at 5 p.m., but you sure couldn't tell it! Blaze ate non-stop the whole time we were there. And there was nothing that he ate that he didn't like. That child had mashed potatoes, macaroni and cheese, pineapple fluff, cinnamon apples, strawberries, broccoli and cheese and some vanilla ice cream. He was bouncing later. Blaze normally falls asleep by 7:30, that night he didn't go to sleep until after 9. That was the first night we've ever been able to get him out of his car seat and into bed without waking him up. It was nice to visit with Grandpa and Grandma. Dining out with Blaze is always an adventure. The one time he started to fuss, an older lady bent down to talk to him and immediately he turned on that Gilzow charm and smiled at her. I am not used to all the attention when we go out. I told Tim I would expect this with multiples, but he's just one little guy. It's odd to me, but I'm glad it's all favorable.

Saturday morning, Melissa and I took Blaze to have his picture taken. He did fairly well. Much better than the first time we took him there. Choosing is so hard! We'll have a nice selection for Father's Day. The photographer suggested having his picture taken for his birthday with a small cake with a "1" on it, just wearing a diaper. He said those are fun. I thanked him for his suggestion and told him I was hesitant to do that because of Blaze's scar. He said we could just get a "1st birthday" shirt or something and that would have the same effect. What excites me about this is that the photographer, who spends all of his working days with children, hadn't noticed anything different about Blaze at all! That's such a good feeling, as a mom of a heart baby! How grateful I am that our child doesn't seem sickly or ill at all. What a blessing!

Saturday afternoon, Melissa and I took Blaze to see Peter Pan. Cathy Rigby stars as Peter Pan in this traveling Broadway, live theater production. For the entire first act, all 35 minutes of it, Blaze leaned forward to watch and didn't even blink. The second part (which was much longer) Blaze was a bit restless. His attention was completely captured while Peter Pan, the Lost Boys and Tiger Lily with her Indians beat on the floor and on the drums. Blaze loves to use Maggie's bones as drum sticks. The drumming fascinated him. He loved it when Peter Pan flew over the audience, scattering pixie dust over the crowd. It was so fun to watch him. Peter Pan isn't my favorite story, but they did a fantastic job. The cast was wonderful. We had Blaze's picture taken with a pirate, on a pirate ship set up in the lobby. It was a fun day. Blaze fell asleep after the matinee and once again, I got him to bed without waking him. Tim & I woke him up at 7:00 to give him his medicines. He took them, then went back to sleep and slept until 6:30 Sunday morning. The poor guy was totally worn out, but he had a good day!

Sunday morning I took Blaze to church. Everyone is amazed at how well he is doing. It made me laugh, though, he came out of the nursery with a bib on. He must be cutting another tooth...or maybe he just likes the drool. In any event, he's been soaked lately. No one said anything about him being fussy, but I also noticed he had gulped down a bottle of milk and was using a pacifier I put in the diaper bag. He never fusses when we leave him at the nursery. I appreciate how good he is in public!

Tonight should be quiet. Tomorrow Patricia from Parents as Teachers is stopping by. That should be good. He has an entire day to recover from his big weekend . Unfortunately, this morning Blaze had lost his voice and couldn't cry. I think he just has quite a bit of drainage. We're keeping an eye on him.

Tim had a rough weekend. He wasn't feeling well this weekend, by Sunday night he was starting to feel better, then he ended up breaking his toe! I am praying this is a better week for him!

The Playful Blaze May 29, 2009

2009-05-29T14:30:00.000-07:00

Blaze is incredibly happy and playful lately. Yesterday he started doing the oddest thing. He would stick his tongue all the way out, towards the side of his mouth. I kept looking at him saying, "What are you doing?" I just couldn't figure it out. Then I looked at our dog, Maggie. I truly believe my darling 10 month old is imitating our cocker spaniel. How silly! But, it is fun. We are taking him to the photographer's tomorrow. I sure hope he doesn't do it there, though a coworker insists that we need a photo of that for the baby book. We'll see what happens.

Lately there isn't a dull moment. He is constantly on the go...and he is always thinking and considering things. He studies everything carefully. Going to the store is always interesting. Blaze will interact with us, but if anyone else tries to interact with him, he just stares them down. He constantly looks around and wants to see it all. SO...I can't wait to see how he reacts when we take him to Peter Pan tomorrow. They are doing Area Appreciation, so we decided to try it. This is Blaze's first time to see anything "live" besides worship service at church. We are very excited to get to take him! We are looking forward to seeing the actors fly above the audience. Live theater is always fun. I am eager to see how Blaze handles it.

Tonight Blaze's Great-Grandparents are in town. We are going to eat with them and visit where they are staying. It's always nice to spend time with family!

I am constantly reminded at what a blessing Blaze is to our lives. Everything is new and exciting. We are so blessed that he is doing well and thriving the way he is. Thank you for your prayers! We are so grateful for them.

Memorial Day 2009

2009-05-26T14:38:00.000-07:00

Blaze seemed to enjoy his Memorial Day weekend, though he still has a bit of a cold. We kept him home Sunday, rather than expose him to other kids in the nursery. We have also noticed that Blaze must hurt when weather fronts move in. He gets so untypically fussy. Unfortunately, it usually takes us quite some time to figure out what is happening and give him Tylenol. Poor baby! He is doing better now.

We did find out this weekend that Blaze is above the 10th percentile on the growth chart now!!! How exciting! In February he had completely fallen off the chart, now he's flying up it! We are so pleased with how he is growing and gaining weight. We never know what he'll be into from one moment to the next. We watched him move a footstool to an area he wanted to be, climb up with both feet on top of the stool and attempt to go on the chair or the table. He swings from his high chair now, too. He stands underneath, grasps the top of the table then raises his feet off the floor. He knows how to get off the couch or the chair now feet first...or he'll go down head first, using his hands and arms. He's still using books to rest his hands on as he crawls across the floor. It's just fun and amazing to watch him think things through and figure out solutions to things. AND he is one determined little fellow! That shouldn't be a shock to any of you who know us. It is incredible to see his spirit.

We are making preparations for Blaze's birthday! We will be hosting a community "thank you" party and you all are invited. We know that so many have helped our family over the last year: prayers, encouragement, meals, donations, gifts, etc. The outpouring of love was incredible. Many of you haven't gotten a chance to see Blaze "in person" due to health concerns. So we are anxious for everyone to get to see Blaze! We don't want you to bring gifts, we just want you to come and have a good time! We will give the details of when and where soon, but keep some Saturdays in early July open!

Tim and I are constantly amazed and reminded on how blessed we are. Thank you for your continued encouragement!

Blaze's Cardiology Appointment May 20, 2009

2009-05-20T14:39:00.000-07:00

Blaze is still trying to get over a really rotten cold, but he was such a good boy at his doctors' appointments this week! Monday Blaze had an eye exam and he has terrific vision! That was not a surprise to us, but we were very pleased to hear it. The BIG doctor's appointment this week was yesterday's cardiology appointment. We had terrific news! Since Blaze was there last in early March he had gained 2 pounds and grown an inch and a half! His pulse/ox stats were in the 90s. His blood pressure was great. Dr. Tong did hear a murmur that he had not heard before, but he was nice enough to literally draw me a picture of what is going on and explain why not to worry about it. I have complete confidence in Dr. Tong and will not worry, but it was nice to be told that it was there. I recently heard a client talk about a doctor who had heard a heart murmur but did not tell the family what was going on. It is good to know I can trust Blaze's cardiologist to tell us what is happening, even if it does not change his treatment or it is not considered important. It helps build my trust for the doctor. Anyway, Dr. Tong predicts that Blaze will probably not need his third surgery until after his third birthday! We are very excited to have this grace period.

Blaze is so funny. He now finds books to put his hands on and slides himself across the floor. He crawls with his legs but just scoots around, not having to move his hands, as he slides with the slick book. Now he is doing this with large toys or anything he can slide. I was cooking the other day and gave Blaze a small skillet to play with. He slid into the living room and then tried to turn the skillet over to slide. Of course, he couldn't go anywhere with the upside down skillet, which with his weight added to it, was pressed down into the carpet. He grunted his frustration, flipped it back over, and slid into the kitchen, once again, smooth side down. He's figuring out which toys make noise when they are upside down and slid across the carpet.

He also turns the pages of one of his books at the right place, when we read it to him. This is a counting book and it's one of his favorites, so we read it to him a lot. It's just a bit odd to have the 10 month old turn the page for you. He has been looking at this Star Wars book What is a Wookie? a lot lately. He still hasn't figured out what a Wookie is, though...he looks at the picture of Chewbacca on the cover and says "Dog" every time. He also says "duck" when he sees a rubber duckie. For awhile he was saying "ber duck" for rubber duckie, but now he's just saying "duck." It's so much fun.

Sunday he climbed onto the couch with no assistance. I've watched him eyeing the entertainment center, trying to figure out if he can go up it, but he hasn't figured it out yet. He loves getting into things, literally. We have a football toy chest and he loves to be put inside it. We are constantly on alert, chasing him, crawling on the floor behind him, swooping him out of Maggie's dog food bowl and taking him down from things...and I am going to be quite honest...we love it. He is alive, he is thriving…and it is so comforting to know he is doing so well. He does wear us out, and challenges us, but he is so worth it.

In the midst of all this praise, I do have a request I want to share with you. When Blaze was in the CICU, two or three days after surgery (at the time he was standing up in bed, trying to get out of it) I met a couple who were touring the CICU. Their baby was diagnosed with the same heart condition with Blaze. They were encouraged with how Blaze was doing and have been on the website. Rebecca, the mom, emailed me this week. Their son, Drew, was born on March 30th. He is now 6 weeks old and still in the CICU. He had many things wrong in his heart and an intact atrial septum caused his lungs to be very immature. He has a lung disease called P.I.G. The surgeons cannot work on his heart until his lungs get better. The lung docs say his lung disease will go away in time (possible 6 months), then Dr. Huddleston can do his first heart surgery. Right now his parents can just sit with him and hold his hand. At this time they still have not been able to hold him, since he is on a ventilator. It is the prayer of his parents that his lungs show improvement. Please pray for Drew and his parents, Andrew and Rebecca. It's so stressful to be in the CICU every day and the uncertainty is so draining. Thank you for your prayers.

We love you all!

Mother's Day, 2009

2009-05-11T14:36:00.000-07:00

Mother's Day was wonderful. Mine lasted all weekend long. Glorious! Friday Tim gave me my first present. Saturday he had lined up a hair appointment, where I could have done anything I wanted and then he set up an hour long massage...and paid it all himself. It was WONDERFUL. I had a nice long nap in the afternoon and then I had time with Blaze. It was just so thoughtful.

On Mother's Day we dedicated Blaze at church. Baby dedications were something I wasn't really familiar with before I moved here. There were four babies dedicated yesterday. The pastor spoke about each child. He then read a responsive reading. We pledged to raise Blaze in a Christian household, where we would teach Blaze about God and demonstrate a loving environment for him. Then the congregation pledged to pray for us as we raised Blaze and to be good examples for our family as we strive to raise Blaze. We were given a certificate and a little white New Testament with "Blaze" on it. It was a lovely ceremony. For us this was just an outward expression of our commitment in raising Blaze. We had already given Blaze up to God a long time ago. We knew early on that we weren't in control, we had to trust God to do what was best for Blaze. This doesn't mean that Blaze is saved. When he is old enough, he will need to make a personal decision to follow Jesus. That isn't something we can do for him. It simply shows our commitment to raise him in a Christ-centered home and be good models for him. It was a lovely service. Blaze's great-grandmothers were both in attendance, as well as his great-grandfather. Grandma Cathy, Uncle Gary and Aunt Barb were all there, as well. His cousins Erica (with whom he shares a birthday) and Tiffany also came. His Uncle John (my younger brother) also got to come. His "Aunt Karen" was there, too. She is my friend and co-worker who watches Blaze for us some evenings when Tim & I need a night out. It was so wonderful!!! I think we were the biggest family there for a baby. It was so nice. Then, my family went out to eat with us.

When Melissa got off work, she gave me a Mother's Day present from her and Blaze. She had Blaze pick it out for me! It was a great gift, too! So sweet and thoughtful.

Blaze also came out of the nursery with a card for me. The workers told us we should have named him "Blur" instead of "Blaze." Apparently he wouldn't stop moving. He was constantly on the "go" wanting to look at one thing, then another. They could hardly get him to settle down to put his hand on the paper for my card. As you can imagine, he is into EVERYTHING now. Nothing is safe from his little grasp. He's climbing on things that he shouldn't be on. He does stop, but cries when you tell him "no." It's just amazing. In all the craziness, I have to say I love it and wouldn't have it any other way. I love that we're raising a climber who wants to constantly be moving. I love his energy and take comfort in the fact he's into everything. It reassures me that he is doing so well.

His next cardiology appointment is next week!

We are going a hundred different directions this week. I will be at the Lake for a conference a couple of days this week. Friday, John's graduating from MSU. Sunday Megan (my niece) and Sarah (my cousin) will be graduating from Nevada High School. My cousin, Dan, is also graduating that day from Law School in Columbia-we won't make it to that one! Plus we have something going on every night this week. We've been in such a cocoon with Blaze from his birth through February that we aren't used to varying off our schedules too much. It's interesting to have been isolated and come out in the world again.

We appreciate your prayers. Thanks so much, too, for your friendship!

What a Roller Coaster! May 6, 2009

2009-05-06T15:01:00.000-07:00

Thankfully, Blaze is doing amazingly well! He is just so sweet. He is also one fast crawler and into everything! I had to take dog food out of his mouth last night. He loves to investigate and explore. We have one area where we all throw our shoes into a basket. I put a pair of his shoes in the basket and he keeps climbing in to get them out. It's quite funny.

Yesterday, Blaze was a little angel baby. I can't express in words how pleased I was with him. Melissa, my niece and Blaze's nanny, called me at work to say she needed to go back into Urgent Care. We had gone on Sunday night, where she was told she had a bad infection and needed to take antibiotics and anti-nausea medicines. Tuesday they were saying she might need to have her gallbladder taken out. Blaze was so good while we waited at two different medical facilities. He talked all during her ultrasound. He has had enough echoes on his heart so the room and set up were not scary to him. I told her Blaze was telling her how good she was and how brave she was being to not cry! HA! We didn't hear any results until after 2 p.m. today. She does not need to have her gall bladder out, but she will need some different medication. If she is still sick on Saturday, then she will need another test.

Tim had an upper GI scope done on Monday. What they thought was the problem wasn't, so it was good they checked things out. He was groggy on Monday and felt icky on Tuesday. They took two places out for a biopsy, so those areas felt especially sore. He has some medicine which will hopefully help.

On Monday a lab puppy decided to call our front porch home. He kept coming inside, he got in the car with us, Maggie couldn't go out without him bugging her. It was pretty obvious that he was really hungry. We have called animal control to come get him, so Tim went ahead and fed him last night. The first day I took Blaze outside to look at the puppy. The pup jumped on me, trying to get to Blaze. I yelped and raised Blaze up a bit higher and Maggie crouched low and gave the defender growl. Blaze and I got back in the house quickly, dog fight avoided. The puppy looked so confused! He would be the perfect "boy" dog. I voted to try to keep him, but I was vetoed. We need to get things a little more together before tackling a project like he would be. If we had a fenced in yard, we would keep the uncoordinated mammoth, but we don't and he needs to find a better home. In the meantime he sits by the front door, randomly crying and throwing his body against the door. At first we all jumped and looked horrified at the sound from the door. Now we don’t even blink at it. I spent a lot of time Monday night thanking God we don't live in an area with bears, wild cats or the like to worry about. A friendly puppy has us held hostage. I can’t imagine living in the wild.

Last night with Melissa sick, Tim feeling oogey, the puppy trapping us in the house, Blaze finally in bed, I got another call. My grandmother had some dental work done and was feeling very ill. Mom stayed the night with her. Mom also let me know that my aunt's dog had to be put to sleep. He was a family favorite and will be missed. It was a bummer ending to a very chaotic day.

Hopefully things will settle down for awhile now! We shall see!

April 27, 2009

2009-04-27T11:19:00.000-07:00

We had a good time at the Walk for Life on Saturday! Thanks to all who donated! We ended up with over $300 for Options. They typically help out over 80 families a year. Two babies were born the day before the walk and 30 some are due! Thanks for helping to keep this vital ministry going. We had wonderful weather. Blaze loves being outside and stroller rides are the best!!! He loves watching people and there were many people out and about on such a pretty Saturday morning. The Sparks family brought their dog and sometimes he was ahead of us. Blaze loved that especially. He thought it was very funny when Mommy and Daddy splashed water on each other before getting in the car. Tim surprised me by pouring a little bit of water on my back while I held Blaze. I returned the favor by throwing a large glass of water on him. Blaze enjoyed the morning very much.

Then Blaze went over to Aunt Karen's so I could finish painting up the bathroom and we could get some chores done. Joyce and Jasmine came down and played with Blaze for awhile. He had a great time there and played hard. He was so tired that night he kept yelling at me when I put him in the bath. He wanted to go to bed! He got to go to sleep in his diaper that night. We turned his heater on, since he still had wet hair and he just crashed. It was so cute.

Sunday morning we went to church with Tim's grandparents. Blaze was a minor celebrity there! It was so nice to know how many people continue to pray for Blaze and lift us up. We are so blessed! During the lesson time Blaze decided to speak those sweet words Tim had yet to hear. In the quiet moment, our son decided to say "Dada! Dada!" Tim smiled down and whispered "Not now!" It was so funny. He kept talking. He wanted Dad, then me, then Grandma and then Grandpa...who took him out into the hallway! After church we went out to eat, where Blaze continuously ate. He kept eating and eating and eating. Later I think he had a bit of a tummy ache, but it didn't hinder him eating dinner! He is so fun.

Tim's parents came down yesterday evening and they got to spend time with Blaze. He had a good time with them. He showed off his walking skills and his favorite book of the moment. He also crashed during their visit so they got to see the sleeping, still boy. When he's awake he is constantly on the go! It was so good to see them!

We've heard that Megan was beautiful at prom, but we haven't gotten to see the pictures yet. I will take their word.

"So what is going on now?" you ask. Well, I am going with Tim today to see a specialist. We are hoping to have some insight on a medical issue Tim has been dealing with. My mom's vision is very blurred in her left eye, she experienced the "black curtain" again, which means there has been more bleeding in the eye. She is disappointed about that. She had laser surgery on that eye to prevent the bleeding from happening again, the next step might be surgery. The anniversary of my dad's death is tomorrow, so this is a difficult time for her anyway. Maggie is acting up around Blaze so we are keeping an eye on her. On a much brighter note, this weekend we are going to a BBQ at Joyce's house. We are looking forward to it. I can't wait for Blaze to meet "Aunt Sue". She has his pictures up in her office, but hasn't gotten to see the real deal yet.

May 10th, aka "Mother's Day", is Blaze's dedication at church. We invite you all to come! I think all of the grandmas will be there with us that day. We would love to see you there!

It seems like there's a lot happening, and there is. Thankfully, though, we are fairly calm and at peace with most of this. There are times where things are harder, but it is so wonderful to have our healthy, active little boy there to remind us that even in the midst of the chaos, God's in control and He has a plan. We couldn't handle any of this on our own, it's only through His grace that we manage. I can't do it on my own strength, thankfully I'm learning to lean and turn to Him to give me strength. Thanks for your continued prayers and support. Blaze is amazing and we are so blessed to have him and all of you in our lives!!!

Joy Gilzow

April 23, 2009

2009-04-23T19:40:00.000-07:00

Blaze is enjoying Springtime...except for the allergies. The poor little fellow has been stricken with a nose that just will not stop running! He gets frustrated with us when we dare to wipe it with a tissue! He is definitely not afraid to speak his mind!

He is having fun, though. He is getting to be out in public more often. It is such a pleasure to be able to take him places and see him experience things through his eyes. He is such a charmer. He still seems to think that Dad cannot complete a project or eat a meal without his help. Wherever Tim is, Blaze is sure to be close by...or climbing over things to get to his Daddy! Some days it almost seems like we have two puppies in the house. Blaze crawls behind us or to us, wherever we may go! If I walk from the kitchen to the garage, he meets me at the garage door on my way back. He moves things out of his way, so he has a direct path to get wherever he is going. Blaze also walks across the house with his push toy. He can't seem to figure out how to turn around when he hits the wall, but as soon as he is turned around, he goes right back across the room. It is amazing what you notice as you pace the floor behind a baby!

Tim just took Blaze to Dr. Wherry today for his nine month appointment! Everything looks great. He is gaining weight, she's pleased with how his teeth are coming in, he's on the upswing! Hoo-ray!!!! We go to see the cardiologist next month.

Last night Melissa took Blaze out to Books-A-Million to show him off to her friends at work. She declared he was an "Angel Baby." I'm always happy and relieved when he's sweet in public. He is such a good kid at home, too, but I am so thankful when he's good in public! She had fun showing him off. Melissa will be going home to Nevada this weekend to help her sister Megan get ready for Prom! She is excited.

We will have a big weekend! We are doing a small home improvement project, it is the first time I am painting a house I live in! I have painted sets for plays, art projects, furniture, friends' homes...but this is the first time I am doing my own. We are repainting our upstairs bathroom. It would not be a big deal, but we are dealing with a time crunch this weekend. We are, as a family, participating in the "Walk for Life" for Options Pregnancy Center. If you would like to sponsor us, please let me know! Then Blaze gets to go to Miss Karen’s house so Mom and Dad can paint the bathroom and mow the grass. Sunday morning we are going to Tim's Grandpa and Grandma Gilzow's church. We are going to their Sunday School class. This class has been so faithful to pray for Blaze and they continue to ask about him, so Blaze gets to visit them Sunday morning! We would have gone last week but his grandparents had been ill and we were all suffering from allergies in our household...so we are hoping everyone feels great by Sunday morning. THEN, Sunday afternoon Tim's parents are coming to spend time with us. How fun! A day of Gilzows! We are so blessed to have family!

Good news out of Florida! Baby Joel is coming home today! Praise God!

Thank you for your continued prayers.

Joy Gilzow

Easter

2009-04-10T17:31:00.000-07:00

Happy Easter!

This is such a special holiday to our family. I was reading a book last night to Blaze about "Easter coming" and how people welcomed Jesus into town shouting "HOSANA!" It's so wonderful to share that with your child for the first time. It gives a new perspective about what God did for us--He sent His only son to die for me. It's even more incredible to me now that I have a son. I watched him recover from medical procedures, got frustrated over the unfairness of it, his innocence...that's nothing compared to what the Father and Jesus went through. What a loving God we serve!

We are going to celebrate Easter with my mom this weekend. We're looking forward to it! It's been awhile since we were in Nevada. The Gilzows are having a big Egg Hunt and dinner this weekend in Columbia. We were sorry to miss that. We're hoping they have a wonderful time!!!

Blaze is just a delight. Every day is something new. We found out this week how much he LOVES having his teeth brushed. I think he would allow us to brush them for hours, if only we would. It must feel good on his ever increasing tooth filled mouth. He has, thankfully, been such a happy guy since that last front tooth pushed through! Whew! I'm hoping we're completely done teething for awhile.

Blaze is also learning to sleep through the night. We're doing a 2 week trial where we're letting him just cry should he wake up in the night. He's already doing much better sleeping the night away. Last night when I put him to bed he didn't fuss at all. He laid there and acted like he was going to go to sleep. I turned on the video monitor and a few minutes later checked it...he was sitting up in bed, banging two cloth blocks together. The blocks have bells inside them, so he was having fun quietly making noise. He would lay down and rest a bit, then pop up again and play. It was so cute. He has to get everything just right to go to sleep. After he went to sleep a very strong rain storm hit our area. Rain just pummeled his side of the house and knocked against his window...and he just slept right through. The thunder didn't even make him move. It was wonderful.

Speaking of wonderful...there is a lady in my office whose son is just a couple of months older than Blaze. We're getting some wonderful clothes from him! Blaze has several pairs of shoes now and lots of clothes in his closet. We were given so many clothes from the baby showers, this was the fewest clothes we had in any size right now, so it was nice to get that boost! It's such a blessing! Thank you for sharing!!!

We do have some things we would appreciate prayer over. We have such a sweet friend to our family, Connie Lytle. Her father passed away this past Wednesday, her brother found him, started having some medical issues himself, admitted into the hospital and had to have brain surgery on Thursday. Please pray for their family at this time. Obviously that is a lot to have to deal with.

Please pray, too, for Joel Seabrook. He was born with an enlarged heart in February. Heart babies make up a small community and this little guy grips my heart. His family attends church where Pastor Jim & Judy Locke are now. Andrew & Rebecca Gerwitz are a couple I met after Blaze's second surgery. They were touring the CICU, preparing for the birth of their son, Drew, who also has HLHS. Drew was due this week and I haven't heard how they're doing, but please pray for them, as well.

Tim will be meeting with a specialist on 4/27/09 to discuss an upcoming procedure. He will be having an upper endoscopy done sometime. We'll learn more about the date after the 27th.

Please pray about my work situation. We're short staffed right now and trying to help a lot of hurting and frustrated folks. It's so hard to see so many people struggling. We do have a new person starting Monday, so hopefully things will ease a bit.

Thank you so much for your faithful prayers! We're so blessed to have you!

Walking

2009-04-06T14:29:00.000-07:00

We have a walking boy in our house! He has a toy with wheels on it that he pushes to go back and forth between mom and dad. He looks at us like he can not quite figure out how he got there. It is so funny! He seems so puzzled by it all. Since he will be 9 months in 11 days, we are rather amazed by this turn of events. Life will never be the same, and we are loving it!

Blaze is also in a sweet phase where he does not scream at us to come get him first thing in the morning. In fact, he was late getting medicines on Saturday, because he let Mom sleep in a bit longer. It was so nice.

We went to Big Lots and bought him a big boy car seat! We are thrilled at how much he is growing and gaining. He is wearing some 12 month outfits now, which just shocks me every time! He was in 3-6 month clothes until the surgery in February! How amazing!!!

Blaze also ate out a couple of times this weekend. That was new for us. We ate with my brother, John, on Saturday. He was accepted into Grad School this past week, so we are very excited about that! Then we ate with Melissa after church on Sunday. It's nice to be able to take him out, but I am very aware of how messy he can be and I keep cleaning up everything.

We left Blaze in the nursery on Sunday morning. I was a nervous wreck, but Blaze did just fine. I must have checked the pager at least 10 times. How funny! I don't know if he interacted with any of the other kids or if he just played with the grown-ups, but it was a good experience.

Blaze was cranky the rest of the day on Sunday. I think he was getting in his last baby tooth...one of the front ones! He still looks a tad like a jack o' lantern, but he is getting closer to having a full mouth of teeth!

Looking forward to Easter!

March 31, 2009

2009-03-31T14:15:00.000-07:00

We had a fun but busy weekend! Blaze had his picture taken at two different studios. One session did not go well, the other was fabulous!

Tim was in St. Louis over the weekend, Melissa went to spend some time with her family so Blaze and I invited Grandma Cathy to come and hang out with us. We had a nice time! Blaze is to the point where he wants to talk all the time...and of course he's not saying anything. He's sincerely trying to tell us something, it sounds like he's babbling sentences. It's cute until he tries to drown out the pastor on Sunday morning. I think he gets to go to the nursery next week!!!! Although he LOVES the praise and worship music. I think we'll drop him off in the nursery right before the sermon, so he can jump up and down to the praise music first.

I also wanted to say thanks to Concord Baptist Church in Jeff City. That's the church that Tim's parents attend and the church Tim grew up in. We got to take Blaze there on the 22nd. So many people encouraged us and oohed over Blaze. It was so nice and welcoming. I was touched by so many of the gentlemen who had been through heart surgeries themselves expressing how they prayed for Blaze.

Thanks for your continued prayers and encouragement. We are so blessed!!!

March 26, 2009

2009-03-26T16:09:00.000-07:00

Thanks! Thanks! Thanks!

Thanks to you, our wonderful friends and family, Blaze turned 8 months old before we had to buy any diapers!!!!! What an amazing blessing. We're still using wipes from the baby shower. We are so grateful.

Blaze is sporting a few bruises from becoming mobile. He flips rather well now, when he falls so he hasn't bumped his forehead as much. He is just a delight and we love this phase! We had such a great time at Audrey's birthday party. Blaze got his last Synagis shot for the year. He's rapidly growing. It's amazing to watch him grow bigger.

The Parents as Teachers lady is impressed with Blaze. He is developmentally right on track. We are excited.

March 19, 2009

2009-03-19T15:29:00.000-07:00

According to Dr. Tong, Blaze's cardiologist, everything's great! Blaze has gained 9 ounces in the past couple of weeks, which is wonderful! He's not gaining too much too fast, but he is rapidly gaining. Hoo-ray! His lungs are clear, so we can stop giving him one of the medicines. Blaze truly is doing well, and we are incredibly excited! AND Blaze has been "cleared" to go to his cousin Audrey's birthday party this weekend!!!! So, we're Jeff City bound tomorrow evening.

It is such an odd feeling. Last year we were thrown into this shock and turmoil, knowing that our son had a heart problem and faced such an uncertain future. We have been so cautious with him, careful to protect him from sickness and illness, and we were right to do so. Because of it, we haven't gotten to see our families as much, our friends as often and every day events like going to the store had to be scheduled around who could stay home with Blaze. And now...we've been given a green light to go back into the world. I cannot tell you how freeing that is! What an incredible blessing. It is going to take some getting used to! HA!

Blaze is beginning to sleep all night, so some of that "lighter feeling" might be us actually starting to feel somewhat rested. He has some nights that are harder than others, but more this week have been good than bad. After 8 months of sleep deprivation, we still have a lot of catching up to do, but it is getting better, thankfully!

Blaze is becoming a social bug, starting with the party in Jeff City this weekend. It's the first birthday party he's gotten to attend. Blaze is getting to spend time with Chris Stanley on Monday (Melissa's going to court that day for her traffic accident-please pray for her), has a Parents as Teachers evaluation on Tuesday, will get to spend time with Miss Karen on Thursday (while Mom has a meeting that night) and Grandma Cathy comes on Friday!!! That's a big week for a little guy!

Thank you so much for your prayers and encouragement. We love hearing from you.

Joy

March 17. 2009

2009-03-17T14:53:00.000-07:00

WOW! Lately I have been overwhelmed by the graciousness and goodness of God. We have so much to be thankful for and today is a beautiful day in the Ozarks to count our Blessings!

Spring has sprung, and so has Blaze. We have a mobile baby! Maggie, our dog, isn't taking this new phase with much enthusiasm. She's rather annoyed that he's figured out how to climb up on the couch, where she has been safe from his grasp all these months. He's just beginning to crawl and has been pulling himself up. It's been so fun. We put foam around the edge of the coffee table that was a hand-me-down from my college days. Tim laughed and commented that the foam was probably worth more than the table at this point! We have some cabinet locks up and went ahead and put some protectors on door knobs. It's early, but it puts our hearts at ease.

Blaze is so happy and fun right now. He slept through the night again last night and this morning I heard him making noise at 5:58 a.m. He was sitting up in his crib, playing with a blanket, just hanging out. When I came in with a bottle he didn't fuss or anything, just smiled that I was there and lifted his arms to be picked up.

I think the highlight of my day yesterday was when Blaze was climbing over me and stopped and put his head down on my shoulder, cuddled for a few seconds, then crawled off again. I am lovin' this phase we are currently in.

Blaze loves to go for walks with Daddy and Maggie in his stroller. He's so happy to be outside. We have the stroller set up for him to face forward and he can easily see the world around him now. He loves it.

Sunday he went to "big church" with us again. He gets restless or wants to talk back to our pastor, so I took him out during the sermon. We're still not to the point where he can go into the nursery. I'm personally looking forward to that day. I love worshipping as a family, I just see how it would be easier on Blaze. He does, however, love the music and lights. He's fascinated by the choir and the people around us. I'm afraid we're a bit distracting, though, during the service. We may have to sit in the back. I love that we can take him to church now. It makes my heart sing.

Yesterday I opened a statement from the hospital that brought tears to my eyes. On this paper was listed Blaze's expenses for his last surgery. The amount was over 84,000 dollars. In the next line was what our insurance's responsibilities were, it was also over 84,000 dollars. The next line was our responsibility, and currently that number sits at 0. We are so blessed to not only have insurance, but the insurance that we have. When I took my job I wasn't doing it for the insurance, though it was a plus. Who knew that almost six years later I would be married and have a baby with a heart condition? I had no idea, but God knew. He had a plan and a purpose, to give us a future and a hope. I'm so grateful!

Please let us know where you are as you pray for Blaze, if you haven't already. We're about to start "mapping."

Thanks, Joy

March 10, 2009

2009-03-10T14:38:00.000-07:00

Blaze is on the go and trying to talk about it! Blaze crawls around in his bed and on a blanket on the floor, but he has not figured out how to go very far or that he can go beyond the blanket. Once that clicks in, we will be in trouble! He is trying to talk, too. At first we thought he was trying to say "Pa" or "Papa" then we realized he is saying "pup-pup" when he sees Maggie. HA! He is still saying Momma or Ma when he is angry. And last night he started to say a "Dah" sound, which I'm sure will just usher in "DOG" instead of DAD! You see where the Puppy/Dog/Maggie ranks.

Blaze is eating a ton and loving life! He went shopping with us on Saturday. He seemed, at first, more excited about playing with the shopping seat cover than the store itself. HA! When we got into the store he was fascinated with everything. He did not fuss once! He was excited about it. Who knew shopping could be so fun?!?

Blaze is also eating everything in sight. He is one hungry fellow and we are doing our best to accommodate him. He is very vocal when he feels he should be fed. It is a new experience for us to deal with the really hungry Blaze. What a great issue to have!

We are loving the fact that Blaze is so active and full of life. He still wants to cuddle some, too! This is such a fun age. We delight in Blaze and feel so incredibly blessed. Thank you so much for your continued prayers.

Joy

Almost like a Christmas Song March 6, 2009

2009-03-06T15:33:00.000-08:00

Blaze slept through the night! It was such a blessing. All it took was a full belly. To get that belly filled, it was almost reminiscent of a Christmas Song. In the hour or so before he fell asleep he had "4 ounces of formula, 3 wagon wheels, 2 mum-mums, 1 container of pears and a ½ container of green beans." Whew! The wagon wheels are made from veggies and are hard. He LOVES them. We have to break them up or he shoves the entire thing in his mouth at once. We watch him very closely when he eats the wagon wheels. But, he actually crawled out of my arms, across the arm of the chair, reached beyond the chair to try to grab the container of wagon wheels, only to knock the container to the floor. I figured if he went to so much effort to get them, I would definitely give him some! He's starting to fill out some now. So fun!

We took Blaze and Maggie on a stroll last night. We had been putting Blaze's car seat into the stroller, so he was going on a rear-facing ride. After we came back in last night, Tim fixed the stroller for Blaze to sit in it like a big boy. Blaze seemed to love it, though he got a bit nervous when Tim was lowering him down the steps! HA! Melissa had taken him outside to enjoy the nice weather and carefully put a hat over his head and ears to keep him out of direct sunlight. He's on some medication that makes him even more prone to sunburn that normal. The hat looked so funny, though. He was so happy to be outside!!! How fun!!!

The jumper came out last night, too! Blaze was so excited to be in his jumper, he rotated around in the chair and spent time with each toy attached to the seat. It was so cute.

I was ridiculously happy to be able to schedule a photo session for Blaze at the Olan Mills Studio in Kmart. I know, I have one of the most documented children in North America, but I was thrilled to be able to sign him up. It's such a normal parent thing to do. I scheduled it for the end of the month, so he should be healed and able to go out into the world more. It's the simple little things that make this time especially sweet.

Today is a big day in our family. This day, 5 years ago, was our first "official" date, so it's a fun memory for us as a couple AND a year ago today we learned that we were having a boy. We also learned of Blaze's heart condition at that same time. What a roller coaster of emotions that doctor's appointment was. If we could have gotten a glimpse of today and how well he is doing now, how much worry and concern would have been eliminated!! We are so blessed!

Celebrating each day...Joy

March 4, 2009

2009-03-04T14:23:00.000-08:00

Dr. Tong, our cardiologist, was very pleased with Blaze today! He had gained almost a full pound since he left the hospital. Tim told Dr. Tong that Blaze was "eating like a hoss". Dr. Tong was happy to hear that and said Blaze was just making up for lost time. Everything looked good. I can stop dressing the wound every day now. (The tape is not friendly to Blaze's skin.) We will just put rubbing alcohol on the incision now to keep the germs at bay. We shall see how it goes! Everything looks great! We are thrilled!

Some have emailed asking about my birthday. It was wonderful, thank you!!! I got to go to church with my baby!!! YAY!!! We sat in the back. Until he's completely healed, he can't go into the nursery. Melissa got to come, too! It was so great to be there with my family! AND the fact Tim and I could go together...that had not happened in a long time. He and I had been taking turns going to church, while the other stayed home with Blaze. What a blessing! That afternoon my mom, grandmother and younger brother came to visit. Tim fixed a wonderful fajita lunch for us. Mom brought a cake. It was so nice. Blaze was such a charmer. I kept thinking "What a difference a year can make!" Thanks to those who sent cards! It was so sweet and thoughtful!

Speaking of sweet and thoughtful...we have some wonderful people who have been making dinners for us and bringing them to the house. It has been such blessing to be able to get back in the swing of things with Blaze and not have to worry about what is for dinner! We are so grateful for your generosity and caring concern.

The radio interview went well. The time flew by and it was over before we knew it! It was a tremendous opportunity to give praise to God for how amazingly well our heart baby is doing. My brother said, "I would never have known he had surgery by looking at him." He is filled to the brim with life and energy...and a voracious appetite!

Now if only we could get the miracle boy to sleep at night! HA!

Love to you all, Joy

Blaze is just amazing! March 2, 2009

2009-03-02T15:04:00.000-08:00

Blaze is just amazing. There is nothing else we can really say. Only God could do this. He is eating 2-4 times more than he used to. It is shocking how much food we are going through now. This morning he ate nine ounces of formula, only to want another bottle two hours later. He has so much energy!

Tim has learned how to make Blaze laugh--he pretends to sneeze. I actually captured Blaze laughing uncontrollably on my cell phone! It's my ringtone now. He is so happy and energetic. We love our "new" Blaze. He has been looking in mirrors and turning them around to see what is behind it. He is so close to crawling now. You can tell he is feeling better and loving life now. The only down side is when we have to change his dressing. He's not too happy to lay down for that. It takes two of us to do it!!!

The picture gallery has been updated, so check out some newer Blaze photos! Also, Tim & I will be on the radio tomorrow. You can hear it downstreamed live on klfcradio.com or 88.1 FM at 7:30 a.m. (Central time.)

Thank you so much for your prayers!

Joy

They are home!

2009-02-25T14:32:00.000-08:00

Joy just called and said that they are home. She sounded very happy to be there. Since they do not have internet access there, she asked me to let you all know.

Thanks for your prayers and support.

Grandma Cathy

On the Road Again

2009-02-25T09:50:00.001-08:00

Free at last!!!! We're on our way home!! Blaze has gotten a great bill of health and is out of the hospital. We're checking at of the Ron McDon house and will start on our way home in a couple of moments.

I can't tell you how relieved Blazey looks and how excited we are!!!!

Thanks for your prayers. Keep checking back for updates!

Love to you,
Joy

A++

2009-02-24T18:32:00.000-08:00

I am ecstatic to report that after doing two echoes, we got the results we needed! IF Blaze has a good night, stats remain good and no fever, then we will be released tomorrow, probably around eleven a.m. Woo-Hoo!!!!!!!!

They took him down early this morning without me to do the echo, EKG and x-ray. A tech met me on our floor to say that she was going down and wanted me to come. They refused to do the echo because he was too upset and the surgeon wouldn't accept the results. I got him and he immediately settled down. The x-ray went very smoothly. They couldn't fit him into their schedule again until mid-afternoon. He did so much better with Mommy holding him. YAY!!!

Blaze got his IV out today and kept trying to eat the leads that the monitor was hooked up to for them to get the stats. He was in some pain today, Tylenol was our friend! He had a rather fussy day and we both took a nap at one point. Our family is in a "study" to see how parents and children cope in our situation. The hospital assigns us activities to do. They gave us a nice cd player and had me listen to a cd, then play a different cd for Blaze. His was a lullaby cd and a beautiful, baby-friendly book accompanied it. For the first time ever, Blazey and I both fell asleep to a lullaby cd. It was nice. So, I dealt with this fussy baby all day, waited for the night nurse to get there before heading back to the Ron McDonald House...so I was really hungry and a tad frazzled by this point...and Blaze became quite the charmer. He was all smiles and giggles for Heather, the night nurse. He spent last night in her care, too. I am so glad they adore each other. Apparently the nurses squabble a bit over who gets to hang out with him at the Nurses Station. How smart of him to be charming at just the right places! Daddy taught him well! HA!

We got some other good news today. Blaze's next surgery will be farther out than we had anticipated. As soon as he's healed, and flu season is pretty much behind us, we can start taking him places! Hooray! Hooray!!! We are thrilled!!! AND his medications have changed, there's just one we will have to deal with long term. No more cutting baby aspirin down to small pieces and crushing them!!! What an unexpected blessing!!

Tim and I are going to pack up tonight, as much as we can, then go get Blaze and hang out with him in the morning until he's dismissed. We'll then bring him back to the Ron McD house so we can check out. Since we're not guaranteed he's going home tomorrow, we can't check out until we know for sure. What a sweet situation to be in. As you're praying for us tonight, please remember the other families in the Ron McD houses who didn't get the news we did today.

Thank you! We'll try to update this before we check out tomorrow.

Love Joy & Tim

Needing an A+

2009-02-23T18:18:00.000-08:00

Dr. Huddleston came by this evening and said that Blaze will go tomorrow for an echo, EKG and x-ray. He is expecting those to come back clear. If they do we will be leaving...drumroll, please... Wednesday! Woo-Hoo!!!

So, we're praying he "passes" the tests tomorrow!!! HA!

Blazey was very upset when I left him this evening. The nurses assured me that they would put him in a bassinet and coo over him at the nurses' station. He wasn't happy in the meantime. I really needed to eat and rest, but I'm having Momma Guilt. I've been told that Momma Guilt doesn't actually ever go away, there's always something. I don't know about that, but I do know his big beautiful eyes were full of tears when I told him bye tonight. Poor little fellow!!!

Thank you so much for the encouragement and prayers! They're what's getting us through this!

Joy

Bye-Bye CICU

2009-02-23T11:48:00.000-08:00

As I email this, we are getting ready to go to the "Progressive Care Unit." Blaze only has an IV in and some leads attached to the outside of his chest now for monitoring purposes. The IV isn't connected to anything, they just leave the set up in him, in case he needs some additional medicine. The only thing he's getting through IV at this point is Lasiks, a diuretic.

Blaze is doing amazingly well. His Grandpa & Grandma Gilzow (Homer & Jeane) were just here to see him. They said with the blanket over his chest you would never guess he had surgery. He still looks a little puffy, but is doing much better over yesterday. He wants to be held, he wants to eat the leads, he fights sleep, he raises a fuss when he's hungry or dirty...so we're pretty much back to normal! HA! We are getting to hold him today, and change him when needed.

I'm wanting to hunt down a hospital gown or sleep shirt for him so he's not so tempted to play with the monitor leads. We really strive to distract Blaze and tell him "NO" very rarely. We want him to know we mean it. He's hearing it today when he attempts to take out his IV. Yeesh.

Tim's feeling better and we both slept really well last night. Thanks for your continued prayers.

2009-02-22T17:46:00.000-08:00

Blaze is feeling very lethargic, but appears to be doing really well. He's not connected to anything but an ARC line, which is like a multi- IV line and it measures things very specifically. Exact measure of breaths in a minute, that sort of thing. He recognizes us, attempts to smile a bit, isn't quite as coordinated as he would like...but he's happy and doing well. Blaze looks good, though he is puffy and looks flushed. He's also very warm to the touch. Part of his "flushed" look is his reaction to the tape they had used across his face to keep his oxygen line in. Poor little dude! He got frustrated tonight with me because he sneezed seven or eight times in a row, and I wiped his sore little nose. He has incredibly sensitive skin. He looks like he is feeling better, not drugged, but still very lethargic, as you would expect someone who had major surgery to be!

Chris & Martha Stanley are our heroes of the day...they brought us big fluffy pillows! That should help. It's a considerable improvement!!! Plus, it was so nice to see them.

My mom is feeling better, but it turns out Tim's mom had the same thing and Tim's been fighting it off all day. I don't feel overly well myself. I think mine has to do with the lack of rest more than anything else. Tim's mom is feeling better, Tim's still not feeling that great, but he did eat something for the first time today. Not fun.

So, we'd appreciate your prayers for health and that Blazey gets rested up and out of CICU tomorrow. Please also pray that we get a good night's sleep. I'm positive these pillows will help! Thank you!

Joy

"We have him back"

2009-02-22T07:29:00.000-08:00

Those are the sweet words Tim said to me a little while ago. Blaze is no longer the drugged, nauseous, sleeping baby we had been seeing. He is in a bouncing seat, sitting up, laughing at the t.v. and is happy as a lark. The only time he's been fussy today is if he loses his pacifier or he has a dirty diaper, which is typical for Blaze. He's pretty much off the pain medications...other than Tylenol, when needed...and he is to have the drainage tubes removed from his chest today. They are considering removing the leads to his heart today, too! He currently has some leads that run from his heart to a temporary pace maker, to use if he needed it...and he didn't! Praise God!!!

Thank you so much for your prayers! We are crying tears of joy at this point over our little guy and his terrific progress.

My mom was set to leave here today at 1 p.m., but she has either the stomach flu or a touch of food poisoning. She's just miserable. As you rejoice with us over Blaze's progress, please keep Mom in your prayers.

Love to you all!

Joy

Resting

2009-02-21T17:16:00.000-08:00

Blaze's blood pressure is fluctuating, so they are making adjustments. He's being weaned off of the heavy duty BP medicine. Apparently he's on more than one, but his body is adjusting. He's also off of the morphine and getting Tylenol for his aches. Because morphine makes him so nauseous, he is able to eat some pedialite and not throw it up!

Blaze looks amazing, especially considering what he's gone through! He actually has color and his hands feel warm...that's new for us. He looks really good.

He's sleeping really well right now and just seems so angelic. : ) My mom is staying at the Parents Lounge at the hospital, so she will be checking on him throughout the night. Tim & I are back at the Ronald McDonald House for the night.

Thanks for your prayers!
Joy

Sleeping

2009-02-21T12:31:00.000-08:00

Blaze has been resting really well. We occasionally have been going and peeking in through the door at him. I just took the cleaned blanket into his room a few minutes ago. He is sleeping so peacefully, not a bit agitated or distressed. What a blessing! I looked at the monitor and read the blood pressure. It is on the low side now. Hopefully it's a combination of the drugs used, but I really hope it's due in part to his body adjusting to the new flow. We shall see!

I must confess I have been resting really well, too. I went to the parents lounge after the last update and Tim had to wake me up to eat at 1 p.m. I was shocked it was so late! I hadn't slept well last night so I'm definitely making up for it today.

Will update with changes. Meanwhile it's a good status quo.

Poor baby!

2009-02-21T08:30:00.000-08:00

Blaze is not happy today, and understandably so. Between the pain from the surgery, the added headache, the nausia from the pain meds, the hunger....he's having quite a time. His blood pressure is high, they are trying a different one. Thankfully there are a lot of blood pressure medicines out there! I asked if this was unusual. Sarah, our nurse this morning, said that it is not uncommon for blood pressure to be high after an angioplasty and after the Glenn, so he has two strikes against him.

He's sleeping quite a bit and we're grateful for that. The trick is to keep him sleeping.

Tim and I have been sweetly kicked out of the room for a few hours. Blaze woke up, got sick all over himself and the dressings, looked around as if to say, "WHOA! Did you see that?" saw Tim and had a melt down. He became inconsolable with Dad standing so nearby and not picking him up. Another nurse came in and Blaze was fine after Daddy left. SO...we're going to hang out nearby but not in the room. If they just can't settle him, they'll come get us. I have a feeling it's going to be a long day!

We had a beautiful layer of snow on the ground here. Thankfully the roads aren't slick. The snow has moved out of the area now, we didn't have any problems with it.

Thanks for your prayers and encouragement!

Resting comfortably

2009-02-20T19:23:00.000-08:00

I just called the hospital and his nurse said Blaze is "resting comfortably." Thank you, Lord! She sounded very happy and a bit surprised by the fact he sleeping peacefully. She said the only thing of concern at all is his blood pressure. It seems a bit high. High blood pressure is to be expected with this type of surgery, because of the re-routed blood flow and the veins needing to expand to accommodate the new routine. They gave him a different medicine to help. He's not bothered by this. I'm so glad it appears he's feeling pretty good right now.

So, we are praising God for his blessings and we know we have so many people praying for Blaze! It is SO encouraging to read the guestbook. Thank you all!

We know God knows exactly what Blaze needs, I also know how wonderful it is to know specifically a concern to pray over. The only thing at all that we know of at this moment, the only hitch we've run into at all, is his blood pressure. It's not a huge worry for us and we are confident it will go away, but it would be great if you would specifically pray over this issue.

Tim and I were discussing at dinner how strange this experience has been. The birth and early surgery were just so traumatic and we kept running into unexpected complications and the doctors were frustrated...that's such a scary feeling. When they called from the Operating Room today and the nurse said there were no complications and Dr. Huddleston was coming to discuss the surgery I thought, "He'll tell us what's really going on." He sat down and said there were no complications at all and I thought, "really? Just wait, something will happen." We keep waiting for the other shoe to drop and it hasn't. He's really doing amazingly well and we're still a bit nervous. We humans are funny things, aren't we? We've dared to approach the Maker of the Universe, the One with all power and wisdom, on behalf of our precious little one...and we're surprised at such a fantastic outcome! I'm so grateful tonight for God's graciousness and patience!!! I just want to jump up and down, yelling my excitement...I doubt the families surrounding me would appreciate it, though. HA! I am grateful, too, for the Ronald McDonald House and Room. It only costs $5 a day to stay the night at the House here and there are many generous groups in the area that provide nightly meals. Tonight a group of middle schoolers had prepared a simple, but very tasty meal...another blessing to add to the list! They even did the dishes!!! It's amazing how humbled a person can be from niceness. From unexpected monetary gifts, to people stopping at the hospital to ask about your child, from someone preparing a meal, to an organization providing a safe place to sleep at night, free Internet access and encouraging words...I am just amazed at every one's generosity and thoughtfulness. Thank you!

We love you!

Joy

He looks good!

2009-02-20T13:00:00.000-08:00

We got to see Blaze for a short time a little after 2 p.m. He looks really good! He has some chest tubes for drainage, some flushness to his appearance and he's a bit bloated...but NOTHING like it could have been and what we were prepared for. Please pray that Blaze does not experience the horrible headaches and that he can rest today. Blaze is sedated, but he wakes up easily. We easily quieted him down and he went back to sleep. We told the nurse before we left our "Blaze calming techniques." Feeding him would really help! He'll have some pedialite around 7 or 8 p.m. Poor fellow!

I keep comparing this surgery to last, and this one has been so much easier. The previous surgery had complications and issues all around. This one had NONE! Last time his chest was open. This one it's closed and he's not even on a ventilator!!!! YAY!!! I'm sorry he is expected to have headaches from this one and be fussier, but this overall, has been a huge relief.

We're not totally out of the woods and we're not taking anything for granted. We praise God for how well Blaze is doing and thank you again for your continued prayers. What a blessing it is to have all of you prayer warriors intervening on our behalf! We love you!

Joy

He's out!

2009-02-20T11:10:00.000-08:00

We just met with Dr. Huddleston. Blaze is out of surgery. There were no complications or problems. PRAISE THE LORD!!!!!! It'll be awhile before we can see him, but we're relieved and rejoicing.

Thank you for your continued prayers.

Surgery

2009-02-20T07:45:00.001-08:00

It was a bit surreal this morning. I sat by my sleeping baby's bed, alternating between his sweet face and looking out at a beautiful view of the arch in a reddening sky. Knowing the day we were about to face it was just a moment that will forever be ingrained in my mind.

Blaze awoke a bit later. He seemed amazed to see both grandmas, mom and dad around his bed. He was happy to see us. The hunger awoke in him before too long and the nurse let me hold him. I was grateful.

We took Blaze down onto the surgery floor at 7:45 this morning. He went into the surgery area at 8:00 a.m. They let me carry him down, then he snuggled down into a doctor's arms and was carried back into surgery. They just called a few minutes ago to say that they had started the surgery. It should be about four or so hours now.

Before they took him, Tim and I were standing there with Blaze in the holding area. I had a refrain from an old song in my head, "I have the peace that passes understanding down in my heart..." And it's true. We're very calm and feeling peaceful this morning. Thank you for the prayers!

I will let you know when Blaze is out of surgery, or if we hit any snags along the way.

Joy

Heart Cath

2009-02-19T18:59:00.000-08:00

I'm sorry I couldn't get this updated earlier today. It's been a rather trying and uncertain day. They were supposed to take Blaze in for his heart cath at 9:30, but due to complications with the patient ahead of us, they didn't come for him until after 11:30. The poor little guy was so hungry...and a bit fussy, though not as angry as I would have been in his situation. He couldn't have milk past 3:00 a.m. so things seemed a little rough for him for awhile.

The doctor today performing the heart cath gave us a head's up regarding 3 areas today that she said made her "raise my eyebrows." It was good to have the warning, they ending up needing to do an angioplasty (or a "ballooning") on his aorta today, because of some blockage. The surgeons prefer that they take care of these types of situations pre-op. Because they had to dilate his aorta, they wanted him monitored really well today. So he did not return to his room on the regular floor, but went instead to the Cardiac ICU. He was NOT happy upon his arrival to the unit. They finally gave him some really great medicine which sedated him, but he could still wake up and have his vitals checked. Unfortunately, when they use that drug he can't eat for another four hours. It's just now 9 p.m. and he should just not be allowed to eat for the first time today. They're hoping to pump him up with a lot of food before it's restricted again in a few hours for his surgery in the morning. To keep his leg still, I held him for a long time. He slept better when he was held, rather than in the bed. What a sweet and precious time that was for me. I needed that time. When I needed a break, Grandma Cathy came in and took over, until it was time for us to leave him for the night. He's in terrific hands and we left our cell numbers with his nurse in case we're needed.

We are going to be back at the hospital at 6:30 in the morning. Rounds start then and we want to listen in. We get to go with Blaze down to the operating floor at 7:15 where we will meet with the team performing the surgery and sedation, then the nurses will go over everything with us again. We will then go to a private waiting room. They will call with updates from the operating room every hour. It is anticipated that his surgery will be over at noon, give or take an hour. Afterwards, Dr. Huddleston will come out and meet with us. The nurses will need an hour to get Blaze back to the CICU and settled in before we can see him.

The surgery they will be performing tomorrow is called the Glenn. There is an artery that takes the used, de-oxygenated blood from your head and upper body and returns the blood to your heart. This surgery moves this artery and makes it so the blood no longer returns to the heart, but flows directly to the lungs, where it can be oxygenated directly. No middle man, so to speak. By the end of the third surgery, his heart will only have one job, to be a single ventricle. The Glenn is supposed to improve overall quality of life. Tim & I are a little concerned about that. If our Blaze is only on "half power" now...my goodness! We are not prepared for full-powered Blaze! HA! I'm sure we'll be amazed at the difference we see in him. He is so full of life and energetic now, I can't wait to see what he'll be like in a month or so!

Things for Blaze will be very different from his previous surgery. The first surgery required his chest remaining open for three days. This time his chest should be closed when he returns. However, he will have a horrible headache for a few days. His body will not be used to this amount of blood going to his head. It takes the body and the lungs some time to readjust, and during that time he will be very uncomfortable. He will also be swollen and flush during this adjustment period. The nurses call this "the cranky Glenn." Fortunately the medicine they gave him today will be used after the surgery and it will help him to be sedated and somewhat more comfortable.

We have been told by the nurses to just leave Blaze alone tomorrow. We are to check on him after the surgery, then leave to get some rest. He will need us on Saturday and he will demand full attention and energy. But tomorrow he will be miserable and need to sleep.

We are not looking forward to the painful reality, but we do know it is time for Blaze to have this done. His oxygen levels were very low. His appearance was so healthy, but things were rapidly growing worse for Blaze. We are so grateful for God's perfect timing. We felt terrible today for our hungry, drugged baby...and we dread the next few days, but we look forward to the wonderful lifetime ahead. It won't be like this for long, and I'm so thankful for that!

We got accepted into the Ronald McDonald House today. Tim's staying there tonight, my mom & I are staying at the hotel for this last night and Tim's mom is sleeping in the parent lounge at the hospital, so someone is near Blazey.

Today was hard and a bit scary at times. Hopefully tomorrow will go smoothly, but we know during his last surgery he had some complications. They are prepared to deal with those issues tomorrow, if needed. In the midst of it all, we say, "Blessed be your name" and trust that God has Blaze in His hands. We didn't know how this day would go and we're not even trying to figure out tomorrow, but we know we can trust the One who does know.

Thank you so much for the encouragement. What a blessing to have you in our lives! It's so nice to know we're not alone. :)

Joy

Better

2009-02-18T20:04:00.000-08:00

I'm doing much better now. I was on the emotional side of things earlier. In my head I was picturing Blaze there in his room, all alone in the dark on a cold, hard bed. I called over to check on him. The lady who answered the phone said that his nurse was with another patient. I thought, "Oh, great." Then she went on to say, "But, I can tell you he's been out here with me most of the night." I asked if he was really upset. She said, "no" that he had a bottle and he was a bit fussy and they were trying to get him asleep. It was funny, though. Here I had him in my mind in a lonely state and he's been at the nurses' station, flirtin' with the girls! They all tell him how cute he is and comment on his big blue eyes. Ha! I am so relieved. I can go to sleep now.

Wow! The things it takes to settle a nervous momma! I'm going to go crash now. We're going over bright and early in the morning. We'll update this as we can. It's been a lifeline today. I so appreciated the encouragement and the prayers. I was hurting and the comments and prayers helped so much. Thank you.

We'll See...

2009-02-18T17:37:00.000-08:00

We'll see how this goes! Blaze is asleep in his bed on 7 West. It was so incredibly hard to leave him. They said they'll call if they need us. My guess is I'll be over there very early tomorrow morning. The nurse suggested we leave and get really rested tonight so we'll have energy after his surgery and he needs our attention. That makes sense.

It turns out his Pulse-Ox is very low. That's the number that measures his oxygen saturation. SO...it's a good thing he's being watched over by the medical community. They have some very anxious nursing students helping out today...so he should be watched well. No monitors were hooked up when we left. I'm sure that will change soon. He does have his IV in so he should have plenty of fluid for tomorrow. He's eating like a champ!

It sounds weird to admit, but I really prefer to leave him in the Cardiac ICU, because he has one on one attention and he is constantly monitored. He doesn't have to wait for attention there. It's a good thing, though, that he's not there. I know that. It's just hard on a momma heart.

Thanks so much for your encouragement! We appreciate it more than you know.

St. Louis

2009-02-18T13:14:00.000-08:00

After a great time visiting all of Blaze's grandparents, we're in St. Louis! It was tricky getting here today, our exit was detoured from the highway. It was quite an adventure, but we made it here in plenty of time.

Blaze's pre-visit went well. He handled the weighing in and pulse-ox just fine, ate a bottle for the first half of his echo, then had a bit of a melt-down. His x-ray was also a bit traumatic for him, but they got the shots they needed the first time.

We've been checked in at a hotel connected to the hospital since one p.m. today. The plan was for Blaze to go over tomorrow morning and get checked in for his heart cath. The nurse just called a few minutes ago and asked us to check him in tonight instead. Apparently his shunt is very narrow right now, and they want to get him pumped up on fluids before the cath. We had felt like this was a possibility, I think God was just nudging our hearts that direction. It was still hard to hear. We had our hearts set on playing with him tonight and spending extra time together before the admission. We have to have him over there before five. We're thankful we're close to the hospital. This could be much, much worse. God's timing is amazing.

The cath tomorrow is small, not like an adult cath. Blaze will not be cut or anything. They actually go in through an IV needle, amazingly enough. He won't hurt at all from the cath. That was nice to know.

Thank you for the prayers.

On the Road

2009-02-15T17:22:00.000-08:00

Hello from Nevada, MO! Tim, Blaze & I are currently at my mom's house in Nevada. We left the job fair (that had thousands of job seekers, instead of the normal hundreds that we had in the past) yesterday and we headed north! We stopped in Springfield and had a nice visit with Blaze's Great-Grandparents. Then, we came to Nevada and spent the night at with my mom. Today Blaze got to spend time with his great-grandma here, too! We've gotten a lot of rest and Blaze is having a good time. He is fascinated with the big mirror and is dancing right now with grandma's help! He's been cooing and trying to talk today. Blaze got to watch a cat outside the window and tried to stomp at it. It's a game we play with Maggie at home. It was cute to see him try it with the cat. So much fun! We leave here tomorrow morning and will go to Jeff City.

We left Melissa and Maggie at home. It's nice to know Melissa has things under control there. It was hard for her to let go of Blaze yesterday which was totally understandable. We called her earlier today to check in with her and so Blaze could hear her voice. Everything was going well for her today! It was nice to hear her.

It's kind of funny in a way. We seem to be analyzing everything. We've stopped giving Blaze aspirin in preparation for the heart cath and surgery, and now we have some concern that the reason he is so tired is because his blood is thicker and his heart is working harder. We also are factoring in that he is out of his routine. It is hard for us to know if things we're experiencing are what every parent goes through, or if he's experience a heart baby issue. It will be a blessing to have this surgery behind us. Hopefully it will help with some of the wondering. We're just trying to be sensitive to his needs right now and not worry about things.

I wanted to let you know that I had talked with the cardiologist this past week and the actual part that the surgeons need to do should only take 15 minutes or so. Of course from the time they take him and hook him up to the ventilator and surgery then recovery will take about four hours. It was comforting to know this is a relatively short procedure.

Blaze is currently laughing and playing with a toy with Grandma. I'm going to go play, too! Thanks so much for your prayers. We are feeling calm and at peace right now, and for that we are so grateful.

Joy

2009-02-10T18:08:00.001-08:00

We have a request for you. Other than "PRAY FOR US" we try not to make too many requests. This one isn't very challenging. Here's some background: there is a theme running throughout the Bible of spiritual markers. Especially in the Old Testament, when someone had an encounter with God or God did something for them, they were often instructed to build an altar to remember that place and what God had done. Tim & I have been so overwhelmed by how many people have prayed for Blaze and we feel that God has been doing miraculous events in our lives. Our request is that you either email us or post it under the comments section on the website, where you are, all of you wonderful prayer warriors. We want to know the town or area you are in as you pray for Blaze and our family. Tim & I will map out the locations on State, U.S. and World Maps. (And tell us the name of your church if you have requested prayer for us there.) So, if you send this email on, please be sure to let us know where the emails are going. Tim & I know that we are going to be encouraged to hear back from you, this isn't just for Blaze. This will encourage us now and be a tremendous blessing to Blaze when he is old enough to understand.

We're noticing some changes in Blaze. He is getting tired faster at night and wanting to go to bed earlier. This is a mixed blessing. We are concerned it is because of the blockage in his shunt that he is going to sleep earlier, but we're also relieved to get some sleep. Plus, we feel this might help him gain weight, it's hard to burn off calories as you slumber! He also is not liking to jump in his jumper as much as he used to. He is enjoying it more now that we raised the seat a bit, but his tolerance with it is much shorter than it was. It is hard to wonder about it all...and we do constantly wonder. It's the unknown that is so challenging right now. Tim & I are struggling with this upcoming surgery. We know God is in control and we are so grateful it is in His capable and loving hands. It is hard, though, to know your little one is going in for open heart surgery and there's nothing you can do for him, other than be there with him. While we know he has to go through this, we are hurting. We appreciate your encouragement more than you know.

Blaze is still doing really well. We do not want to sound all gloom and doom. At night he is scooting around his crib. He gets himself trapped in a corner and gets angry that he cannot get out of it. One night Tim and I just took turns going in his room and turning him around. It was so funny! His big thing now is to throw his pacifier. He has an amazing arm for such a little fellow! He can literally throw it across a room. I think he gets a kick watching us look for it. We actually have had to move furniture in order to retrieve it. He also loves a show on t.v. called "Imagination Movers." Who knew? We get a few minutes to accomplish tasks when this show is on. It is so funny to watch Blaze. He leans forward and really watches it. He is so fun. Early (really early) one morning, Blaze was not feeling well, he had a runny nose and he was having problems sleeping. He was fussy, so I rocked him and held him and he continued to fuss. So, I started making up a story about a little boy named Blaze and his doggy Maggie and all the fun adventures they had. I just talked and talked and talked (shocking, isn't it?) and I got to a point in the story where Daddy helped Blaze build a tree house and suddenly I had to stop. Blaze had put his hand over my mouth! I laughed and tried to talk some more to see what he would do...he made a noise like, Hush, Mom, left his hand over my mouth and went to sleep. SO FUNNY!!!! Blaze delights us. He is a fun kid and we are so blessed to have him.

We have our first Parents As Teachers visit tonight. They wanted to visit pre-surgery. We shall see how it goes! I am excited to learn new activities we can do with him. I think it will be beneficial, especially for Melissa who is at home with him for such a long stretch of the day.

We are gearing up for our St. Louis trip. We will be leaving immediately after the job fair on Saturday, Feb 14th. Tim & Blaze will be there to pick me up and we will head out to visit family for a few days before heading to St. Louis. We are so looking forward to meeting Tim's new nephew!!! It will be a highlight of that week! I plan on being back to work on March 2nd. On March 3rd, Tim & I have been asked to share our testimony on KLFC. You can listen online. The website is http://www.klfcradio.com/ . We're on at 7:30 CST.

Thank you so much for your continued encouragement and prayers. We will keep you updated through emails or through the website while in St. Louis. We will have internet access at the hospital. We're so blessed to have you in our lives!

Joy Gilzow

February 2, 2009

2009-02-02T14:30:00.000-08:00

Blaze's surgery has been scheduled for February 20th, it will be in the morning. We will check in for pre-visit "stuff" on the 18th. This consists of things like a Echo, EKG, Chest X-Ray, Nasal Swab (for any illness), etc. The 19th Blaze will go in for a heart catheterization. This is a dye test to assess his situation. He will not be released from the hospital on the 19th since his surgery is the following day. The 19th will be hard, he will need to not move his leg for several hours following the test and will have to remain prone on the bed, but he will not be completely sedated. The open heart surgery on the 20th will eliminate the need for the shunt, thankfully, since Blaze's shunt seems to be closing. More about the surgery below.

His recovery time is supposed to be about a week following the surgery.

The second surgery is called the "Glenn" procedure. Basically they will re-route the blood flow in Blaze's body. They will make it so one artery is taken from the heart and connected to pulmonary circulation, or the lung "system" if you will. The shunt will be taken out. The lungs will have less pressure on them. This surgery really helps the upper half of the body. The third surgery will assist the lower half of the body, but that's a later discussion. Quality of life is supposed to improve, but I MUST say that Blaze has had EXCELLENT quality of life. He has never acted like a "heart baby". I believe that is due to your continued prayer support. We can't even begin to say "thank you." We appreciate the support and encouragement. It's what keeps us going.

Keep an eye on Blaze's website while we are in St. Louis! http://www.blazegilzow.com/

January 23, 2009

2009-01-23T23:28:00.000-08:00

Blaze had his 6th month check up! Everything went well, he was not happy about his shots, of course, but he takes them like a trouper! He is very sleepy today, I think it is a reaction to the flu shot. We need you to pray about his weight. He has fallen into the lowest percentile, weight-wise. Dr. Wherry says that a decline in weight is normal for a baby his age, because of the increased activity level. Typically, though, babies gain weight before they start losing, and Blaze hasn't had a period of weight gain. I asked if his heart was the reason for the decline in percentile. She said it seemed that the weight issue corresponded with the narrowing of the shunt in his heart. Tim, Melissa and I have a plan that we have come up with to try to increase his caloric intake. He is rather particular about things and not afraid to express his opinion, so we will have to see if Blaze agrees to our plan. Ha! It is so surreal for us to have a child that is under weight. I know it is due to his medical condition. Blaze is doing so incredibly well, it is hard for us to accept this situation. We are definitely fighting this battle and would cherish your prayer support in this area.

While I am very concerned over Blaze's weight, I know we are so incredibly blessed. Blaze is doing so amazingly well. It seems ungrateful to be discouraged over this latest development. We know that his situation will be constant ups and downs...the ups are just so incredibly wonderful, it is hard to be hit with the reality of the downs. We are doing okay, though. Discouraged, perhaps, but not defeated, by any means!

Our nephew has a name! He is Mattias Ander Gilzow. Mattias (Ma TYE as) is the Hebrew word for Matthew, meaning Gift from God. Ander is the Scandinavian variation of Andrew which means man or warrior. I think his nickname is Andy! We are celebrating this little guy in our lives!

My mom had laser surgery on her right eye on Wednesday. She is still having problems being able to see out of her left eye. Blaze and I are going to visit her this weekend. My niece, Megan, Melissa's sister, is having an MRI in a couple of weeks. Please remember Megan and her family in your prayers.

Thank you for your prayers! We love your encouragement. Please feel free to drop us a line in the guest book or shoot us an email!

January 20, 2009

2009-01-20T16:31:00.000-08:00

Blaze had his cardiology appointment on Friday. He weighs 14 lbs. 6 oz. and he's over 26 inches long. They were impressed with him. He's been so healthy! He looks and acts like he feels great. They did notice this time that the blood flow through the shunt has been increasing in speed, which means the shunt is getting smaller. We have known all along that he will need to have a heart catheterization before the next surgery. This will involve a dye test and they will check and make sure that his veins can handle the increased blood flow following the surgery. Some of it will kind of be an x-ray for his chest and heart. Because they are concerned the shunt is decreasing in size, they will probably do the catheterization sooner rather than later. They will decide when to operate following the catheterization. The second surgery will, among other things, eliminate the need for the shunt.

So! I am expecting a call from St. Louis to schedule the catheterization or a call from our cardiologist stating that the surgeon isn't concerned and nothing is scheduled at this time. Either way, we should know something within the next couple of weeks. Thanks for your continued prayers.

We're not alarmed or overly concerned about this. We are, however, so incredibly grateful for the technology being used (echo & EKG) and the medical staff who is vigilantly watching over him. Blaze does not look or act like a baby with a heart condition, he's not indicating to us at all that there is a problem. For the doctors to catch this ahead of time is wonderful. It wasn't the happiest news we could have had, but we are grateful to have some warning and we know that God is watching over Blaze.

Blaze is trying to crawl and so frustrated that he can't quite get himself coordinated. He SO wants to "go"! He is just a delight lately. He has been playing peek-a-boo now. He will pull a blanket up over his face and push it down. He watches until we say PEEK A BOO, then smiles and laughs. He is so much fun! The day after Christmas he tried holding onto toys and taking a few steps. He has done that again, but thankfully hasn't quite figured it out, either. I'm not ready for Blaze to go too far on his own. We celebrated his 6 month birthday last Saturday. Hurray!!!! What a blessing he is!

Thank you, too, for praying for Blaze's brand new cousin. He arrived today at 10:11 a.m., he weighed 7 lbs. 9 oz. and is 19 1/2 inches long. (I'm not a proud aunt or anything!) He has yet to be named. As some of you might recall, Baby Boy Gilzow, tried to make an early appearance, but thankfully he waited until his due date to come! We are very excited that a boy cousin has been added to our family! This is Tim's brother Paul's child.

Tim has been sick but is feeling better now! Melissa's court date for her accident has been rescheduled, the paperwork hasn't been filed yet. Work has been very stressful lately. Melissa and I started going to Nia classes. It is an exercise class that is low impact aerobics, but constant movement. It is great to go together. It is a great stress relief! I had been going faithfully to class prior to Blaze, it's nice to be back...even if it is just one night a week. My mom is still having problems with her eyes. She goes to the specialist in KC tomorrow. She has been working lately, too. It's challenging but she is doing it! What an amazing example of determination and courage. She's amazing.

Thanks for your prayers! We so appreciate them!

Joy

December 30, 2008

2008-12-30T15:45:00.000-08:00

We had a wonderful Christmas. We did a surprise visit to Grandma Cathy's house. It was so fun to surprise her! We did a quick visit there on Christmas Eve, then drove back home. Uncle Steve got to visitBlaze for the first time. They both seemed impressed with each other! HA!

Christmas morning had us waking up at 3:30 a.m. Tim & I could not sleep, Blaze slept rather peacefully. It was so funny! Blaze opened his presents and tried to eat all the paper. I think he would say Christmas was perfect...if only someone would invent edible wrapping paper. We wrestled with him and paper all day! He got lots of fun stuff, but the highlight of the day was having a visit from Grandpa Floyd & Grandma Becky...and their dog, Buddy. Blaze was amazed that they were there and that a new dog was in our house. His already huge eyes were really ginormous that day! He had fun, and we loved visiting with the Gilzows and playing with Blaze on this special day. We read the Christmas story from one of Blaze's Bible Storybooks. It was a beautiful day, forever burned in our memory.

Grandma Cathy and Uncle John came to visit us on Friday and Saturday. It was so nice to have them there, celebrating Christmas with us.

Blaze was blessed with many presents. One of the cool gifts Blaze received was a Bounce & Pounce Tigger. He must have thought it feltgood against his teething mouth. He kept leaning against it, putting his head against the vibrating toy. So cute! Another gift Blaze received was a Ball Popper. It shoots small balls into the air, the balls are supposed to land back on the toy, run down a ramp and getsucked through again, while playing music. It is very fun and entertaining...especially since the balls rarely all land where they are supposed to land. Blaze came up with a new use of his toy. He pushed himself off of his dad's lap, moved the toy forward and began walking behind it. Blaze is only 5 months old. He has yet to figure out how to crawl, but he is using a toy as a walker! Good grief! He has also figured out how to get down from our laps...but he cannot go anywhere once he is down. It frustrates him. We are encouraging him to crawl. I am hoping the rest will wait awhile.

Meanwhile, he is teething and just miserable. You can see his bottom two teeth already and we have a third that has broken through. He is not wanting his bottles today, because his mouth hurts. Melissa fed him cereal with a spoon. Blaze felt like he should feed himself. Apparently they both were coated in cereal before everything was said and done. He did eat quite a bit, though! He watches us eat all the time. I am going to get some veggies for him the next time I go to the store. I think he is wanting to eat more than cereal in the bottle can provide. Because he is hurting, Blaze is a bit crankier than normal, to put it mildly. We take turns being frustrated with our little man's antics. You would never know he had a problem with his heart, when you hear him holler! He has excellent lungs! HA!

Cheryl, the home health nurse just came by and gave Blaze his Synagis shot. He handled the shot really well. He is still just 14 pounds which is very frustrating. We have really been trying to get him to eat and I sincerely thought he was gaining weight. We will have to talk to his doctor for some advice, I think. Something to pray about, for sure!

I got to go to church two Sundays in a row! Tim was not feeling well last week and I got his turn to go to church, since Melissa volunteered to watch Blaze for us. It was wonderful to focus on how not to worry. I really appreciated that sermon. Several of the points hit home, but Iwanted to share an insight that I had not thought about before-Daniel still went into the Lion's Den. Even though God rescued Daniel and Hewas there with Daniel, Daniel still went through and had to experience being in there with the lions. Another point was that when God says-Fear Not-and He does throughout the Bible, He typically couples it with the promise of His presence. How amazing! It gave me some courage as we move ahead towards Blaze's next surgery. I had just been dreading it. That scary dread feeling is not there. I am not looking forward to it, but I am not resisting the idea anymore...which is an excellent step for me.

Several have asked about Noelle. She has not had her baby, thankfully! They got labor stopped in time and she is doing much better. We look forward to his appearance this next month.

We are looking forward to this new year and all the exciting things Godhas in store!

2008-12-23T12:36:00.001-08:00

Merry Christmas from the Gilzows! This Christmas has been so fun and such a blessing. Blaze is such a joy. He loves all the lights and Christmas music. Our tree is pre-lit and rotates, so Blaze was very entertained with it. We took our time getting the ornaments on it. Blaze would giggle as I unwrapped the ornament and held it up for him to see. Because it rotates we would put an ornament on and wave bye-bye to it. So funny. Later we would put him in his Bumbo seat in front of the tree and he would reach out to grab it and get frustrated as the limbs went by, beyond his reach. He is not quite ready to tear open paper yet, so we have been working with him on tearing! HA! Blaze loves looking at the snowmen we have displayed on the window sill. The singing snowman display captivates him. We know Blaze will not remember this Christmas, but we will. It has been so fun to watch his eyes light up. What a beautiful memory to keep!

Because of the germ factor, we are not traveling this year. We just cannot risk him. SO--Floyd and Becky are coming here on Christmas day to celebrate with us. Cathy and John, my younger brother, are coming the next day. We anticipate much laughter and happiness during those days! Grandpa and Grandma Gilzow sweetly offered to watch Blaze for us so we could go to the Jeff City gathering, but with all the plans here, we decided to stay put. It is so wonderful to have family!

It has finally happened! Blaze has a tooth! It poked through on 12/21! We were beginning to think he would have hurting gums forEVer! There is another one ready to break through at any moment. He loves gnawing on our fingers, so I am confident we will find out soon enough when it makes an appearance.

We had an odd call from the cardiologist yesterday. He was wondering if the surgeon had scheduled the next surgery yet. I told him I did not know about it if he had, my understanding was that the surgery would be decided after the next cardiology appointment. They made it seem like they were just checking in with us, but it does make me wonder what is happening behind the scenes, so to speak. We will find out soon enough. I am determined not to worry about it. We will enjoy Christmas and New Years, then think about our next step. We are so blessed, I am not going to ruin it with worry.

Thank you to all who continue to encourage us! I say it a lot, but we are really blessed to have you.

Merry Christmas from all of us--Joy, Tim & Blaze

December 15, 2008

2008-12-16T11:13:00.000-08:00

Blaze has been amazed and awed at the Christmas decorations we have out. We have twinkling lights at various places around the house and our Christmas tree revolves. We can put him in his seat in front of the tree and he just coos as he watches it. We also have a small display with small snowmen on a ladder, with flashing lights. He just sits there with his huge eyes and mouth open. So much fun!!! He is very entertaining now--he laughs, sticks out his tongue, blows bubbles and raspberries, he is funny and engaging. This has been a very fun stage except for the lack of sleep. I saw a onsie the other day that said--Silent Night! Yeah, Right! That seems to fit us lately. Blaze has been fussier lately at bedtime. I think his teeth might finally be breaking through, poor fella! It is taking forever for them to make an appearance. We've begun adding a bit of cereal to his milk now. He seems to really enjoy that. He is just not feeling really well, overall right now. I just called home and Melissa says that Blaze is being a little angel, so maybe he is feeling better today! A mom can hope!

Tim's birthday was a real success. I made 15 mini-cheesecakes and 15 mini-pies. Each one was a bit different! We had dinner with friends from Bolivar on Saturday night, a celebration at home on Monday night and a dinner out with friends on Tuesday night. After the holidays are over we will have a bigger celebration. More details to come on that one! It was very nice and Tim was happy with everything. A very nice birthday.

Joy's mom, grandma and brother came down on Saturday. It was so nice to see everyone. Blaze was very good for the grandmas and Uncle John. At one point it sounded like he said grandma. My mother dropped what she was doing and ran to him. It was funny. John's birthday is on the 16th, Grandma's is on the 19th, so we had lots to celebrate!

Things are going really well for us! We look forward to celebrating Christmas. We miss seeing all of you! Please feel free to stop by when you can!

December 8, 2008

2008-12-08T15:00:00.001-08:00

Blaze had a great cardiologist visit on 12/5/08. I was really hoping to see 14 lbs. on the scale that day, and of course, the little guy weighed in at 13 lbs. 15.6 ounces. So close! HA! He is just about 26 inches long!!! Dr. Tong felt the weight was not a concern, that at 14 lbs, Blaze is right in between the 25th and 50th percentiles, so not to worry. He said it would not be a problem to start putting in a teaspoon of rice cereal into his bottles to see how he could handle the sucking, but he did not think it would be a problem. If it is a problem, we'll spoon feed him cereal. We have not begun to feed him solids yet. Dr. Tong wants us to wait until Blaze shows signs that he needs it--like if we give him a 4 ounce bottle of milk and he is hungry again before his normal eating time. I also asked about bed time. We had just started, rather nervously and anxiously, I might add, to leave Blaze in his crib at night and walk away, when we felt it was time for him to be asleep. Then, because of his heart, and his ability to change color rather quickly, we would go back and comfort him after 5 minutes, then start the process again. Dr. Tong told me we should let him cry for 15. Boy is that hard on a mama! We are letting him do this when he wakes up at night, too, unless, of course, it is time for a bottle. He is always still crying at the end of the 15 minutes, but goes quickly to sleep when we come in. I will have to update you later on how we are doing. Dr. Tong was pleased with how Blaze is doing. There was a small surprise during the visit. They happened to see a leaky valve on the echo. It is so small, it cannot be heard with the stethoscope, he thinks that Blaze might have had it all along and they are just now finding out. It is no big deal, nothing to worry about, he will probably grow out of it. In my mind, if it is a problem, they will fix it during the second surgery, but Dr. Tong was very adamant that it is not an issue.
Blaze was a little worried when we took off his clothes and laid him down for the echo. Lately he has been getting shots. I tried to reassure him that they would NOT give him a shot. It took a bit to calm him down, he cried nervously and not sincerely for awhile, then relaxed. It is enjoyable to take him to the cardiology office. We walk in and they all yell BLAZE. The reception staff all marvels at how big he is getting and what a cutie he is, the nurses ask if they can cuddle with him. It has been a wonderful experience for us, and I am so grateful, since this is the office we will be going to until Blaze is an adult! What a blessing!!!
So, what's next? The next appointment with Dr. Tong is on January 16th, a day before Blaze turns 6 months old. Dr. Tong will collect the info and send it to Dr. Huddleston, our surgeon. At that point Dr. Huddleston will factor in several things and decide a time frame for the surgery. I asked how long this recovery time usually is. He told me to budget in being gone from work 2 weeks, but Blaze will probably be out of the hospital within 5 days. I was amazed they would release him so quickly! I am hoping for the best!
Today (12/8) is the day Tim turns 30! We made Dad a special card with Blaze's handprint. Of course Blaze got ink stuck under his tiny fingernails, but other than that it turned out well! We will do a bigger celebration next month, once the holidays are over with, but so far we have had dinner with high school friends from Bolivar and tomorrow we will have dinner with friends from church. We have been intense for so long with Blaze, it has been a very different birthday experience for Tim this year. We have been so blessed!
Joy

December 3, 2008

2008-12-03T14:40:00.000-08:00

December 3, 2008
WOW! What a blessing! I was faxing in some paperwork for the home health nurse who comes to give Blaze his Synagis shot-the shot that protects against RSV. I was glancing over the paper as I was faxing it and saw a handwritten note. The shot costs OVER $2,500! That is not the series price, that's for one dosing!!! Thank GOD for good insurance. It's not costing us a thing to have her come and give the shots. I was just amazed and grateful.
Cheryl came to give Blaze the shot on Monday. He weighed 13 pounds 14 oz at that time. He's25 inches long. He has a cardiologist appointment on Friday, December 5th, so we'll get a weight update then and ask some questions. When we went to his "normal" doctor's appointment, he was weighing in at the 25th percentile, and I really want to know if that's just a baby thing, or if it's because of his heart. We have a list of questions to ask him! I'm looking forward to this appointment. Mom is on a mission for answers!!!
Thanksgiving was nice, Melissa and I went to my uncle and aunt's home in Springfield. All the family, except for Tim and Blaze were there. Blaze stayed home with Dad, we didn't want to expose him to the germs that are bound to be in a group that size. My cousin's little girl, Ella, was there entertaining us. She was 10 months old and very fun. We'll find out in a week or so if she's going to have a brother or a sister in April! We learned that Dan, Missy, Ella and the new baby will be moving from Columbia back to Springfield in July, after Dan takes the BAR exam. It was exciting to hear they will be closer to us! Aunt Cathy sent home so many leftovers for Tim that the three of us were eating on it for days! It was a nice time to be with family! Melissa was really excited to get to see her parents and siblings...even if it was for just a couple of hours!
Blaze is fun and entertaining. He still loves his jumper...he spent 2 straight hours in it yesterday, not wanting to get out. He has been a tad on the cranky side lately, but that's to be expected with his teeth trying to break through and the shot. Last night was especially hard, sleep wise. Every time I went to lay him down, he began screaming and refused to settle down. I was questioning if there was something medically wrong with him. Tim offered to take us to the ER, when we both realized he was sleeping as long as he was being held. I told Melissa about it this morning. She's working with him today, being sure to lay him down whenever he naps! He had been doing SO much better, just waking up for bottles. Please pray for Blaze to sleep peacefully, and for us to have the wisdom to know how to handle situations as they come up. We're not the quickest or best thinkers when we're awakened in the middle of the night.
We've got some plans in the works to celebrate Tim's birthday. It's the big 3-0 this year! His birthday is on Monday, the 8th. We'll be celebrating with people this weekend, then we'll be doing something else after his birthday! I'm really hoping this will be fun for Tim. And, yes, I am purposely being vague. I'll say more after the fact.
Hope you're having a great week!
Joy

November 30, 2008

2008-12-03T14:28:00.000-08:00

Settling in for the long haul...

Blaze begins getting his Synagis shots today! He'll get one a month until springtime. The literature we received over the weekend states that he should stay home and not be "at family gatherings, in malls, on buses, in daycares, etc." I was holding onto a shred of hope that we might be able to go to our families for Christmas or Thanksgiving gathering, but I think not. RSV can be deadly for Blaze. He's more important than all of us being together. It's hard, though, so if you feel good and want to drop by and visit us, we'd love to see you!

We had a small scare last week, which ended with a trip to the Emergency Room. I could have gone my whole life without that happening. It just wasn't fun. He's doing okay now, I'm excited to say. We all passed around a stomach bug at our house. Part of the bug made a person exhausted and there was no choice but to sleep. I knew Blaze wasn't feeling well, so I held him all night. He slept very deeply. When it was time for me to get up and go to work the next morning, Blaze just refused to wake up and stay awake. He had missed a bottle, while he slept so hard. He slept through the morning, until 10 or so, and did not seem very comfortable when he awoke. (Thankfully, I felt like something was wrong and stayed home with him that morning!) His coloring did not look good at all and he hadn't had a wet diaper since early in the evening the night before. I called our home health nurse, who became concerned that he might have been dehydrated. She insisted we get him into the doctor. Dr. Wherry couldn't work him in and she insisted that we take him to the ER. By this time he had eaten, and was feeling better. I did not feel a trip to the ER was necessary, but thought we'd better be safe than sorry. I ended up explaining his condition to the ER medical staff there. They were curious, of course, and I needed to get the pertinent information to them. One example: pulse/ox. Blaze is okay in the 70-79% range, for most of us it's 100%. They were thankful to know that info. On the portable machine Blaze's rate was in the 60's, that wasn't good, so they hooked him up to the monitor in the ER Room and it went up to around 83%. That was fabulous for Blaze! His color did not look right until later that afternoon, which really concerned me. It's typical for heart babies to look "dusky" but we had been so blessed that Blaze hadn't taken on an odd coloring. He looks "normal" again. We were dismissed almost immediately after checking in. We gave him Pedialyte between feedings all afternoon. He LOVES it! He looked so surprised that it didn't taste like milk. He definitely enjoyed having a variety.

I almost feel bad for the home health nurse who is coming by to give the shot this afternoon. I have a ton of questions written out for her to answer today. For instance: when Blaze was a newborn we had to time how long it took him to eat, and cut off the milk at a certain time if he hadn't finished, because he would have burned off more calories eating than what he was consuming after that certain point. I want to know if that is still the case. Can we start giving him cereal this next month like a "normal" baby would or do we need to wait? How much should he be sleeping? Yesterday for my mom, he wouldn't nap throughout the day longer than 20 minutes but then he fell asleep at 6 p.m. and slept most of the night. Hopefully we'll get some questions answered. Thankfully, we have a "team" I can refer to when I need answers!

Melissa has been blessed to have, I believe, 4 great-grandmothers (I know she had at least 4 of them) until this past Friday. Melissa's Great-Grandma Heathman died and the funeral was on Monday. My mom was here for the weekend and stayed through Monday evening, so Melissa could go home and be with HER mom and go to the funeral. Blaze had a wonderful time with Grandma Cathy, but he was happy to see Melissa this morning, too! It's so great to have so many people to love and care for your baby!

This morning was so fun. Melissa and I got up early to go vote before I had to go into work, so Tim could watch Blaze. (Tim voted absentee ballot since he has to work so long tonight, updating election results.) Blaze was delighted to have both Mom and Dad with him this morning. He smiled and cooed to us. He was just the little charmer. While Melissa and I were voting, Blaze figured out he could scoot across the bed by pulling himself with one arm and kicking his legs. He's figured out how to raise up on his arms, but he can't seem to make them do the crawling motion yet, which really frustrates him. He was pleased with himself by learning to scoot more efficiently today. He's so fun.

Halloween wasn't too exciting around our house. We had Blaze dressed up in a Jack o' Lantern onsie with matching socks that had "Baby's 1st Halloween" on them. Tim was sick and the weather looked kind of bleak. We had 2 little girls trick-or-treat us and Tim and I both missed them! In our married life, we have not had any trick-or-treaters. In the past we had participated in Kids Fun Night at church and hung a sign on our door to go there for any potential trick-or treaters. These girls were the first and we weren't upstairs when they stopped by. I couldn't believe it! It was funny. Hopefully next year will be more exciting!

I'll know exact figures a little later on today, but Blaze weighed in at over 13 pounds at the ER last week! I'm anxious to see how much he weighs today. He's just right on track with what "they" say a 15 week old, born at a healthy weight, should be! I can't tell you what an amazing blessing that is. He is doing so much better than we ever thought possible. It's not been without challenges and we know there will be difficulties ahead, but we just praise God for our miracle boy. Thank you for your continued prayer support. We feel them and we can see them working.

Joy

November 25, 2008

2008-12-03T14:25:00.000-08:00

Blaze continues to do really well! We had a "normal" doctor's appointment last week, for his 4 month check-up. He's in the 50th percentile for his height, which means he is smack in the middle of what the "normal" height is for a child his age. 50% of the kids his age are taller than him, which means 50% of the kids his age are shorter than him. I was a little concerned that he is in the 25th percentile for his weight. The doctor, however, was thrilled with Blaze. She thinks he's doing great, and she's so happy for us and how well he is progressing. She wouldn't want him on the high end of the weight scale, because of the pressure and strain that can build up on the heart. However, if he slides below the 25th percentile, she's going to be concerned. SO! We are putting more milk in his bottles. We're trying to up his intake a bit, to see if we can get a little bit more "on track." I don't want to strain his heart, but I really think he's doing so well he should be able to take on more food. We're waiting until next month to add cereal to his diet. The milk he's getting has more calories in it than the cereal, so we're going to add the cereal to what he's already consuming. We can't put the cereal into a bottle, because he would be burning off too many calories consuming it by sucking it down. Personally, I don't mind putting off spoon feeding cereal just a couple of weeks longer. We are taking him to the cardiologist on December 5th! We'll see how he's doing then.

Blaze loves his jumper and exersaucer. He jumps all the time! Even when he's crying because he's tired and wants out, he continues to jump until we can reach him. He dreams of jumping now, his flaying legs have been rudely awaking him at night, as he jumps in his dreams. If we all weren't so tired, it would be funny! He has also learned to roll over. He's caused us to be a tad jumpy and ever vigilant as he has already decided to throw himself, head first, off of things. I had him propped up on our bed, against the pillows, giving him medicine and he decided to dive head first off the bed, rather than take the medicine. He didn't just fall over, he tried to fly. I caught him mid-air, but not before he barely bumped his head on the nightstand. Scared me to death! He is constantly trying to "go," which makes life exciting for those of us living with him. I love his energy and enthusiasm, but I think we're in trouble. He's only 4 months old and we're already considering the best way to childproof the house!

Blaze is also blowing raspberries and sticking his tongue out at us. Then he laughs and laughs. What a beautiful sound the laughing is! Blaze has also discovered toys. He loves the lights and sounds of the toys around him. It's so fun to watch his expressions and hear his squeals of delight. He also just adores Tim. Anytime Tim walks in the room, Blaze's eyes follow him. If I'm holding him in our bed while Tim is there, Blaze leans out as far as he can towards Tim. I think Tim suspects I'm nudging Blaze, but truthfully I'm not! Daddy is just the coolest in Blaze's eyes, along with Maggie. Maggie has come to an understanding with Blaze. She now gets in his face to sniff and sometimes lick him. She licks his feet and legs and he is thrilled whenever she pays attention to him. She still walks away before he can reach out to her, but she's making an effort to be closer to him. I can only imagine the trouble the two of them are going to get into "someday." We can already see they are "buddies in the making."

Blaze got to go visit Miss Netta the other night. She watched him for us when we went Christmas and grocery shopping. Sometimes it's tricky for us, since Blaze can't be in groups of people--like at church or shopping centers, so we were excited she could watch him for us. He was on his best behavior. Tim & I were very relieved by that! It was nice to get done what we needed to do, but we were both anxious to get back to him that evening. It was even sweeter to know it went well!

Please continue to pray for us and our families. There have been some additional complications to Melissa's accident. She's not driving at all right now, which makes it a tad harder for us. It's not a good situation and we're not sure what’s going to happen next. There's some anxiety involved which the whole thing. We also have family members struggling right now--my uncle, Layton Coulter, had a pacemaker put in, and had to retire from Cox South. He could no longer work around the equipment he maintained. That, of course, is an adjustment, but he seems to be handling it really well. We're praying the pacemaker will help his heart act like it is supposed to! My cousin, Erica Coulter, is a freshman at MSU. She has experienced an unexpected weight loss and a hard growth between her ribcage. She's having some blood work done. Hopefully we will hear back soon! Carla Gilzow (Tim's sister-in-law) has a brother, Craig that is not doing well at all. Craig is in his late twenties and this is his fourth round of cancer. We're just praying God's best for Craig, we ache for him and his family and pray and hope for a miracle. Both of our jobs have added extra layers of stress upon us. All of this, plus being hyper-alert about Blaze and his condition make things hard right now. In all this uncertainty and concern we still have so much to be thankful for. We have been so blessed. God is so good! Blaze is doing incredibly well, we have friends and family who love and support us, we are grateful for our insurance (our statements have gone down from over $220,000 to $444 still in dispute, but will get straightened out soon), we are blessed and thankful to have jobs, we have childcare for Blaze at home with a person who loves him, so things are going well. Sometimes it's easy to get mired down in things that seem overwhelming and it's hard to see all the wonderful things we've been given. One of our favorite things to do now, when we're home alone with Blaze and Maggie is just to sit in peace together on the couch. Tim holds a (usually) sleeping Blaze and I lean against him, nestled with Maggie. It's moments like those where you just stop, take a breath and thank God for the wonderful things He's given us. And in this holiday of thankfulness we thank you for all the prayers and kind words. We're so grateful and thankful to have each of you in our lives. This journey would be so much harder without you in it with us!

Joy

November 12, 2008

2008-12-03T14:24:00.000-08:00

Blaze has just become Mr. Social lately! Until last month he had never visited anyone's house before and now he’s been to three, with a fourth to come tomorrow night!!! After visiting Grandma Becky & Grandpa Floyd last month, I took him to Chris & Martha Stanley's on election night. Both Tim & Melissa had to work that night and I didn't want to be home alone with Blaze watching the results roll in. Blaze always looks around in amazement at the different surroundings. It was the first time in quite some time he had gone out at night. He was still wide awake by the time I got him to Hollister, which surprised me. He had fun there and I was so glad for the company! It's nice to have friends you can pop in and visit when you need a break. Saturday some of Tim's friends from Bolivar stopped by to visit us on their way back from Christmas shopping in Branson. Chris & Kristen have a boy, Kale, who is about 2 and a half, but he stayed home with Grandpa & Grandma. Joel & Amber are expecting their first baby, a girl (whose due date is my birthday, March 1st) so they were all prepared so be slobbered on by the teething Blaze. I was excited for Kristen to see the nursery, she had found the border and pattern when we were expecting Blaze. It was fun to point out to Joel & Amber the things that were very helpful for us with our little one. It was nice to have them visit! Yesterday we went to visit Tim's grandparents in Springfield. Tim's Uncle Rick was visiting from Tennessee. Blaze stayed awake the trip to Springfield, took a nap while we were there, then slept most of the ride home. He was terrific for most of the time we were there. I was so glad he chose to be sweet and charming when visiting his great-grandparents. We had a nice time with them! It’s always nice to visit grandparents!!! Tomorrow we're going to visit Hiram & Sally Catlett. I'll have to let you know how that goes! We're looking forward to it!

After visiting Grandpa & Grandma Gilzow yesterday, Tim went into town with a friend, Blaze and I were settled in at home when I got a call from Melissa. She had been in an accident. Her car has now been declared "totaled." Please pray about this situation. She's sore and somewhat shaken up, but everyone was okay. Melissa is working at Books-a-Million in the evenings and weekends, which means Tim or I will be taking her back and forth to work in the coming days. Considering she gets off work at midnight, things will get interesting. I plan on taking Blaze with me when I go pick her up tonight, if he's still awake. Lately he's been waking up at 9 p.m. and refusing to sleep until several hours later. I'm hoping the car ride will knock him out so he'll be sleepy once we're home!!!

Before the accident, the "big" news in our house is--we got Dish! This is my first time in my entire life that I've had something other than an antennae or rabbit ears for t.v. signal. Tim & Melissa both love watching t.v. and we can't go out as much as we used to, so we have more time at home. The prices came down tremendously and Tim's birthday is coming up, so that's his birthday present from me this year. What we had before was okay, but this has made a huge difference in our viewing shows. The big thing that strikes me, besides the variety and choices--and not having to squint at the squiggly lines on the screen to figure out what is going on--is how OLD the t.v. anchors look when you can see them clearly. The weatherman I used to always watch must be SEVERAL years older than I thought he was! Who knew? Ha! AND Blaze has more shows that I feel better about him being exposed to. We couldn't even get Sesame Street before, now he can see Dora the Explorer! Melissa wasn't happy to watch Elmo's Birthday party on Sesame Street the other day, but Dora she can handle. HA! All in all, we're pretty happy about the change.

Everyone has been so kind to ask how Blaze is doing. We can't go many places without being stopped for an update. It's so wonderful to be among such a caring group of people. We're doing okay! Some days are harder than others, of course. Because of his condition, we are hyper-sensitive, I think, to changes in his condition. We really are careful where Blaze goes. We are still avoiding large crowds of people and small children. Before we go anywhere we call to make sure how people at the house are feeling, to see if we should bring Blaze. We're so grateful for everyone's understanding of our situation. I thought we might be overdoing it a tad, but all our healthcare providers are applauding how we're handling things. He does have a check up on the 19th, so I'll have more "stats" for you next week. I've also recently become aware that we have an outrageous amount of pictures of Blaze. I won't apologize or defend this situation, or change anything, we are silly about our child. Plus, with three adults at home, there's always someone within arm reach of the camera! At first we were taking pictures because we were afraid we wouldn't have him with us and also because our situation was unique and people were curious (hospital pictures.) Now we take them to celebrate Blaze and his funny personality. We also document his progress. He's doing so much better than we were expecting him to. We are just amazed by him. Someone asked me this past week if I print off all his pictures. No, we have them stored digitally (in several places), then we print off what I want for baby books, special pictures or surprise photos for grandparents. There are a couple of photos that are currently my "favorites", those will definitely make it to paper! Twice in this past week, we have shown off Blaze's scar from his incision. We know people are curious. We're not offended when people want to see how he's healing and he's too little to care right now. We'll be happy to answer any questions anyone might have. Sleep--or the lack of--is what we're currently struggling with, please pray for peace for Blaze as he sleeps at night. We're so grateful for your encouragement and support. We've been so blessed through your faithful prayers.

Speaking of prayers, I think another by-product of having a child with a unique health situation makes you extra sensitive to other children and parents in your shoes. My heart just aches for these little ones and their families: Please continue to pray for Jake. He is a little over a year old now, but he was born with the same heart condition as Blaze. He ran into more complications than we had and he had a heart transplant a few weeks after we came home from Children's Hospital. We recently found out that he suffered some nerve damage in his hand, from not having the correct blood flow. There are some repercussions from that and he will deal with those repercussions the rest of his life. We’re saddened at how his life will be affected, but we celebrate the fact Jake is a fighter and he's alive today! Please continue to pray for him and his family. I also look at Skyler Sander's website, http://www.skylersanders.com/ almost daily. Skyler has a brain tumor which is inoperable. We're praying his tumor goes away and never returns. Skyler returns to St. Jude's next week for a check up and MRI. Skyler's family attends the same church as we do, and through him we learned of a little girl they met at St. Jude's named Sydney. Just last month her mom was getting "quality of life" counseling. It didn't look like they were going to get their miracle--then she had a MRI last week that showed the tumor had shrunk! WOW! Way to go GOD! What a blessing! Also, please pray for Kamryn and her family. Kamryn is a beautiful little girl at our church who has hearing difficulties. Thankfully she doesn't have a condition that is life threatening, but this is still a huge challenge, and it's an adjustment to all in her family, too. This time of year, I'm guessing, must be more difficult. People tend to look at Christmases past and compare with how things were before and it's typical to think about things that occurred in the previous year, and this was a challenging year for all these families. Please pray for continual peace and encouragement for these kids and their families…Blaze included.

Thank you! We know "the effectual fervent prayer of a righteous man availeth much." And we're clinging to that as we look ahead for Blaze and for these other precious young ones.

Love,
Joy

Tuesday, October 28, 2008

2008-11-01T14:49:00.001-07:00

Hi all! We entered Blaze into a photo contest. He's entry #149. The link below the email takes you directly to his picture. There's a suggested .25 donation per vote. Or you can vote once a day with a original paper ballot in the Springfield News-Leader for free.

Blaze is doing amazingly well! If you haven't seen his website lately, check out: www.blazegilzow.com. We have new pictures and updates on there. I try to update the site once a week. Blaze actually slept long periods at a time last night. What a blessing! Tim put one of the crib attachments that we have on "heartbeat." Blaze slept incredibly well. Tim's a genius! It never occurred to me that it would actually "work". I kept checking, in disbelief, the video monitor. One point, though, I thought, "He would cuss if he was able to right now." Blaze was laying on his side, holding his hands together in front of him. His pacifier had fallen out of his mouth. He's really good about taking his pacifier in and out of his mouth now with his hands, but he just couldn't get to it, the way he was laying. He was trying to get it with his open mouth…but it was just out of reach. He was so mad and determined to get the silly thing. I'm sure if he knew the words he'd have been saying them. Poor fellow! Other than that and waking up to eat twice, he was totally a sleepy boy! I feel so good today! It's amazing what a little sleep can do!!!!

Thank you so much for your prayers for Blaze. We also appreciate the votes for Blaze. We know we're being a little silly with the photo contest. We just love to celebrate the miracle of Blaze. Thanks for indulging us.

Joy

Click here and see this baby in the Oh Baby Contest.

2008-10-27T13:55:00.000-07:00

Blaze had quite the adventure this past weekend! We took him to visit Grandpa & Grandma in Jeff City! Grandma Becky had knee surgery, so we surprised her with our visit. She's unable to drive or leave the house right now. Since Blaze had never even been in someone else's house before, this was an experience. Tim drove, Maggie sat next to him, Blaze and I were in the back. The other third of the backseat had our bags in it, because Blaze's stuff took up so much room in the trunk. Tim likes to feel prepared for anything. We ended up taking his portable crib with the built in changing station with us. Thankfully it folds down really well! I thought it was a bit excessive to bring it with us, but later realized it made a lot of sense! Blaze had his same bed and mobile…he was comfortable with "his stuff." Blaze met his cousins, Annika (20 months) and Audrey (19 months). Neither one paid too much attention to the baby…until their moms would hold him! That sure got their attention! Annika is going to have a baby brother in January, so this was a good experience for her. At one point we propped him up between them and took lots of pictures! It was fun to see the three of them together for the first time. With Grandma being unable to join us for several things, or even supervise the meal…things got chaotic at dinnertime. It was fun, though! The girls were movin' and groovin'…into everything! It was a terrific eye opener for me to know what we were looking forward to. We all enjoyed our time there and getting to see everyone.

Blaze enjoyed hanging out with Grandma on her bed. He got a nose to nose view of their dog, Buddy. He also got to see Maggie and Buddy play together. They play rough with each other most of the time, so he got to see another side of Maggie. He watches her a lot more now! HA! We celebrated Maggie's first year with us last Monday. She loved her new toys. Maggie and I were playing with one of them and I heard Melissa say, "Oh my gosh, look at him!" and Tim say, "Honey, look over here." I looked over and saw Blaze. He was sitting up on Dad's lap, bending over, staring at me and Maggie on the floor playing…with his mouth hanging open. The pacifier had to be rescued from falling out of his mouth. It was so funny. Melissa had decorated the house a little bit for the occasion. Blaze was fascinated with that, too.

TEETH! Blaze has at least 3 teeth coming in. You can't tell by looking, but your finger would sure notice! Poor little guy! He's doing fairly well with it, though he's not afraid to tell us when he's not feeling his best! I pray for peace a lot for Blaze. Peaceful sleeping and peace when he's awake. It hurts a momma to hear her baby crying. We can’t do much for the pain since he’s so little. Thankfully it hasn't been too bad.

Blaze has been watching Tim a lot lately. He watches him cook and wants to be able to see everything going on when Dad’s in the kitchen. I walked up the stairs the other day and saw Tim playing a video game…with Blaze sitting in his lap. Blaze was fascinated with the colors and sounds…and tried to get his hand on the controller. If you haven’t checked out the picture gallery, now's a good time to check out the updates!

Speaking of pictures…I entered Blaze into a baby photo contest. Voting begins the last week of October. I'll let you know how you can "vote" for Blaze when I know more info.

Last night Blaze and I had another laughing session. I'm loving his coos. Lately he's been putting vowels and syllables together…especially when he’s really mad and wants a bottle. It’s been fun to guess what he’s "saying."

Things are good! We don’t have another doctor’s appointment with Dr. Wherry until mid-November. We’re coasting along just fine! Thanks so much for your prayers. We still need and cherish them.

Joy