Ryan has master the inch work crawl. As you can see, he gets up onto all 4's, then lunges forward. He will patiently repeat until he reaches the desired destination, especially when that destination is as appealing as the remote control or a piece of paper. Yesterday, I think he was just crawling to crawl, so proud of himself! He is also eating a little better. I was feeding him bananas the other day and he actually threw a little fit when I stopped shoveling for a second to get his brother a drink. Now if I could just get him sleeping through the night again. He used to be so good but along the way he figured out if he wakes up and cries, Mom will come and get me and rock me and if I can just wait her out long enough, I can snuggle up with her and dad in their big bed and have a little snack. We let the older boys cry a little, but with Ryan, I just can't. I still think about all of the time I couldn't hold him and I just fold. I met with a new pediatrician on Monday and I really liked her. She asked me more questions about Ryan and gave me more reassurance in the 5 minute conversation I had with her then our previous doctor has in the past 7 months. After she sees his 3 inch thick chart, she may not be so anxious to have us as new patients. I requested a copy of his medical records (just the pertinent info that you can get for free) and it filled a 1.5 inch 3 ring binder. It is really interesting, I learned that he was on bypass for 2 hours 25 minutes and that his aorta was cross clamped for 51 minutes. I had read that they like to keep bypass time under 3 hours, but I am not sure where I read that, probably another blog. There are a couple of things on his last echo report that I would like to talk to someone about. It noted "trace aortic valve insufficiency" and "physiological pulmonary valve insuffiency" and some turbulent flow in his right PA. They are probably the type of things that are normal post repair of TGA and that no one can tell if they will remain stable or cause problems, but I would just like to know a little more, it is probably no worse then I am imagining, given the optimist that I am. I think we have finally settled up with CMH, 7 months later. They were very patient about waiting for the insurance to pay, I called a couple of time, nervous about getting 180K+ bills that show no sign of payment and they always just said it will take time to go through insurance. I am just thankful it all happened with a minimum of trouble, we are very lucky. I will never forget getting the first bill that was semi-itemized. 12 days in ICN = 80K, 5 days in PICU=40K, total pharmacy=19K, operating room=52K. The scary thing is that these are just hospital charges, physician service are billed separatly. Yikes! Some kiddos are down there much longer.
The other boys are fine, Kyle just got his 2Q report card and it was perfect. His teacher wrote in the notes section that "Kyle is becoming a great leader and is a role model to his peers. He is always eager to get to work and puts forth great effort". She is not know it sugar coat things, so I was of course quite proud. When I told him that, he said "your welcomed". I just left it at that. Grant is still Grant, responding "Oh, no, no, no" to every request or idea and dropping the occasional "dammit" when frustrated. We went to a music class on Wednesday and he said "I don't know about all this stuff, Mom", but he eventually warmed up and had a great time with cousin Lilly.
No comments:
Post a Comment