Blaze's Cardiology Appointment May 20, 2009
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!
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!
posted by Blaze @ 2:39 PM
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