Hi-I guess it is time for an update on what I have been up to. I have seen a bunch of doctors and have lots of news!
First doctor I saw was the one who did my surgery-Dr. Argenta. Mommy and daddy took me down to see him so he could check on my mouth and so we could talk about my second surgery. He said that my mouth looked fine and that it had healed perfectly-so that was good news. Then he said he wanted to do the hard palate in September before winter came and it got to cold. So-we scheduled the next surgery for Sept. 24 and we go down for pre-op Sept. 20. I am really not wanting to do all that again-but mommy said I would be done after this one so I guess I can do it one more time.
We also went to see my new eye dr.-Dr. Betor. She was very funny and nice. Mommy says she is a very good dr. and very thorough-whatever that means! She shined lights in my eyes and everywhere and wanted to make sure I looked at them. She also showed me a couple of toys but I wasn't to interested in them. Then she put some eye drops in my eyes and I had to wait a while. I was a very good boy except when they put the eye drops in. It felt funny and I cried a little bit, but after I got used to them I was ok. Dr. Betor looked at my eyes after she used the drops to make sure everything was ok. She said that I was most definitely NOT blind and that I was a perfect candidate for vision therapy. She told mommy and daddy that I am compensating for some of my missing parts in my brain and that my vision is delayed like everything else. She said she believed my vision would continue to improve over time and that I could be classified as legally blind for the moment but not forever. Mommy and daddy were so happy!! Mommy even cried. She said my optic nerves were a little weak but that was just something else I would learn to deal with. They won't get better or worse. My eyes also looked a little more mature than they should which means I am using them more than I should and I may be near-sighted soon and need glasses. Mommy and daddy are both near-sighted so thats no big deal. Dr. Betor wants to see me in 6 mths. and I meet my vision therapist, Drew, this Thurs. to start with her. Mommy is very excited about vision therapy and meeting Drew.
I also went to see my new Neurologist, Dr. Parrott. He was very nice. He played with me and looked me over and he spent an hour talking to mommy and daddy and answering their questions. They really like him. He said I was doing very well considering my conditions and that he would see me in 1 yr. He said I was at an 85% risk for seizures and if I had any to call him and he would see me sooner. Hopefully-I won't have seizures and won't need to see him sooner.
The last dr. I saw was my geneticist, Br. Boyd. She has known me since the night I was born and I really like her! She was so happy to see me and said she couldn't believe what a good baby I was. She was very proud of me for all I was doing. Mommy took the paperwork to have blood drawn to send for genetic testing, so Dr. Boyd drew mommy and daddy's blood. They already had my blood banked so I didn't have to be stuck. The blood is going to Dr. Max Meunke in Baltimore and they will see if what I have is genetic or if it just happened. Mommy says she don't care because she loves me just the way I am, but if I can help another little baby then it is worth it. Dr. Boyd also wants me to see an endocrinologist when I am in the hospital for my surgery. He will check my growth hormones, thyroid, and bone growth to make sure I am growing ok and don't need help with anything. Dr. Boyd said it was a good idea to keep a check on it and mommy was glad because she had already been thinking about it. I weigh 16 lbs and I am 24'' long so I am still a little small for my age.
Thats all my dr. updates! I have been doing very well in my therapies too. This past week in both EI and PT I pushed up on all 4s when I was on my tummy! I also can sit up pretty good and I have my protective reflexes. I am standing well and Susan, my PT, says I won't need her if I keep this up!! In EI I transferred an object from one hand to the other and I held a toy in each hand. Gay was very happy with me. Mommy and daddy are very proud of all I can do.
I will turn 1 on Aug. 28. Mommy is going to have me a party on Aug. 27. I can't wait! Mommy says she can't believe I will be 1 already. It has been a fast year and she says it has been the best year ever and she wouldn't trade me for the world!
