December 30, 2008

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!

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

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

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

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

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

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

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