We had our follow up with the orthopedic surgeon yesterday to go over the MRI results (spine is normal). His curve has increased pretty dramatically in the last few months because he's just growing so fast. (from 31 degrees to 50) So next week we are going to set up a date for VEPTR surgery. (check out veptr.com i think which gives a lot of great info on it - they are also called titanium ribs) It will be early summer he thinks. We are scared but really excited. It sounds like it will do wonders for our little man and give him a chance at straightness. :) He'll have to be in the hospital for about a week, which is going to be pretty crazy. He's so wild right now I can't imagine keeping him couped up in the hospital for that long without him screaming and running through the halls. I am hoping it will help his speech too to get him straightened out some with this procedure. Sorry its a crazy ramble, I'm just thinking out loud I guess.
He's up to 22 lbs and they said like 32 inches (but i swear they never really take the time to measure him correctly unless you are at the endocrinology office). He was supposed to have another sleep study at the hospital to check for apnea but he was sick and snotty and so we rescheduled for May. Boy oh boy its shaping up to be a wild and fast spring.
4 comments:
Hi,
I just wanted to say thank you for writing your blog, which I've just discovered.
My second son is 6 weeks old and has been diagnosed with PWS, which we're just coming to terms with. It's really good to read something that's open, honest and positive.
Keep it up!
Titanium ribs -- the girls will think Isaac is a superhero!
Thanks for reading Proops! If you ever have any questions or need to vent/talk, feel free to email me at angela.cantrell@hotmail.com Getting a diagnosis was so hard - but it really helped to figure out what he had and then move on from there. Congratulations on your little one!! I hope to hear about him soon!!
Hi
What about with the Surgery? Is Isaac using some "corset"? ( I don't know how you say it in english. Today we took an x ray and I think Bauti's curve has increase and, may be , now he has two curves... I'm very worried about it...
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