November 20, 2009

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

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

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.

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