Nicole

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

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

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

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

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

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

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.