Here we are on the other side of Christmas and I can't believe I haven't posted a blog in over two weeks. So much has happened. On December 18th we went to a Craniofacial Panel assessment appointment. Christopher was seen by a nurse, speech/pathologist, nutritionist, social worker and geneticist. They gave us good advice for his feedings and general health (he's a healthy baby). Then the geneticist talked to us about Moebius Syndrome. It's the direction we're going now, because his face has issues with the 6th and 7th nerve (eye and mouth area) and he has clubfeet, all arrows point to Moebius. It's a hard diagnosis to digest but it could be much worse. We are very fortunate that the left side of his face is the only side affected because many cases have both sides affected. I think the hardest thing really to deal with right now are his feet. They are looking sooo good, but right now he has to wear a Mitchell Brace. It's two little strappy shoes hooked onto a bar to keep his feet at a specific angle. He has to wear it right now 23 hours a day. I call it his baby snowboard and we have decided he will be a professional snowboarder someday. :) He doesn't seem to mind it so far and in the future he won't even remember it I suppose. It's just crazy to hold your snuggly little baby with a hard metal brace all the time.
12.29.2008
A Diagnosis and Life
Here we are on the other side of Christmas and I can't believe I haven't posted a blog in over two weeks. So much has happened. On December 18th we went to a Craniofacial Panel assessment appointment. Christopher was seen by a nurse, speech/pathologist, nutritionist, social worker and geneticist. They gave us good advice for his feedings and general health (he's a healthy baby). Then the geneticist talked to us about Moebius Syndrome. It's the direction we're going now, because his face has issues with the 6th and 7th nerve (eye and mouth area) and he has clubfeet, all arrows point to Moebius. It's a hard diagnosis to digest but it could be much worse. We are very fortunate that the left side of his face is the only side affected because many cases have both sides affected. I think the hardest thing really to deal with right now are his feet. They are looking sooo good, but right now he has to wear a Mitchell Brace. It's two little strappy shoes hooked onto a bar to keep his feet at a specific angle. He has to wear it right now 23 hours a day. I call it his baby snowboard and we have decided he will be a professional snowboarder someday. :) He doesn't seem to mind it so far and in the future he won't even remember it I suppose. It's just crazy to hold your snuggly little baby with a hard metal brace all the time.
12.12.2008
2 X 2 X 2
Two amazing baby feet after the 4th casts. He does not have to have any surgery and will be put in the brace as soon as it comes in!!! YAY! What a great Christmas present. It's wonderful. I am so tired of the casts and we're ready to move on to the next stage!
12.02.2008
Friends of Ours
Proud Papa... my dad loves this little guy. It's fun to see him with his first grandson (and the only one he's going to get from us, I might add)!
This is Josh's Great Aunt Pam. So it would be Christopher's Great Great Aunt Pam. We think she's pretty great. Lives up to the title!
This is the picture that makes me laugh out loud. No, it is not a giant baby next to Christopher... it's our friend Brynn. She just happens to be three months older than Christopher. A perfect example of how fast babies grow. It looks like I photo shopped her in doesn't it? Well, I didn't. In a few months we won't even be able to tell the difference in their ages. Then they will be married.
Here are Christopher's feet today before casts number four were put on. They say he's looking really really good and may (MAY) not need a surgical procedure that some babies need to release his achilles tendon. Let's pray he doesn't need it but if he does, well, then, he does.
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