Monday, October 25, 2010
We've been busy!
We've been all over lately! I love fall!! Its my favorite time of year!! & its festival season here in WV so there's always stuff to do! I feel like we are really getting the kids out there. I have started taking them to a play group at the library & they have been enjoying that (they even had a Halloween party like they were big kids!).
We never heard anything back about the ACTH test so we are guessing that is good news :)
We have a sleep study in November and cannot wait until we get back on the HgH! He's been off since July and we are really excited to get back on!
When we went for our PW appointment the first week of October he was in the 60th percentile for both height and weight and they were pleased, not concerned.
Sorry for the rambles, and blurbs but I wanted to update. OT has recommended using his z-Vibe more (vibrating the muscles around his face) and working with sour foods (like lemonade powder, we used cranberry crystal light today) to get him to use his mouth muscles. Speech Therapist has recommended working on single sounds and trying to get him to hum. He is trying to say everything these days it seems - he sounds wild, but he sure is trying! The humming because he is so into music and dancing and pretends to sing all of the time.
PT we still need to work on getting him to get himself out of the floor when there is nothing to pull up on - and crawling - he still struggles and doesn't do it often - we are all walking and FAST at that. We have used the exercise ball some and he is doing great. She recommended getting a little toddler trampoline for him.
Anyways - he is well and happy, which is all I've ever hoped for. Lucy is keeping him on his toes!
Here's a video of Isaac and his cousin Georgia at the Black Walnut Festival riding the carnival rides. He LOVED LOVED LOVED it!
We never heard anything back about the ACTH test so we are guessing that is good news :)
We have a sleep study in November and cannot wait until we get back on the HgH! He's been off since July and we are really excited to get back on!
When we went for our PW appointment the first week of October he was in the 60th percentile for both height and weight and they were pleased, not concerned.
Sorry for the rambles, and blurbs but I wanted to update. OT has recommended using his z-Vibe more (vibrating the muscles around his face) and working with sour foods (like lemonade powder, we used cranberry crystal light today) to get him to use his mouth muscles. Speech Therapist has recommended working on single sounds and trying to get him to hum. He is trying to say everything these days it seems - he sounds wild, but he sure is trying! The humming because he is so into music and dancing and pretends to sing all of the time.
PT we still need to work on getting him to get himself out of the floor when there is nothing to pull up on - and crawling - he still struggles and doesn't do it often - we are all walking and FAST at that. We have used the exercise ball some and he is doing great. She recommended getting a little toddler trampoline for him.
Anyways - he is well and happy, which is all I've ever hoped for. Lucy is keeping him on his toes!
Here's a video of Isaac and his cousin Georgia at the Black Walnut Festival riding the carnival rides. He LOVED LOVED LOVED it!
Friday, October 22, 2010
Babies with iPads: I uses the iPad to match animal sounds
Babies with iPads: I uses the iPad to match animal sounds: "I is developmentally delayed due to Prader Willi Syndrome. He is using the iPad to match animals and animal sounds. He is also imitating s..."
Monday, October 4, 2010
Tonsils & Adenoids are out
We are in Columbus today and his surgery has just now finished. Apparently his tonsils were big but his adenoids were huge. She said we should see a big difference. I'm excited!
He was in such a good good mood yesterday when we got to the hotel. He walked around and around in his Spider Man jammies before getting a bath and going to bed. I think he just likes having me and Eric to himself. :)
He was in such a good good mood yesterday when we got to the hotel. He walked around and around in his Spider Man jammies before getting a bath and going to bed. I think he just likes having me and Eric to himself. :)
VEPTR x-rays: Before and After
BEFORE:
and AFTERInsane isn't it?? What's truly amazing for us is how fast the curve progressed from December of last year to April of this year. Its been 6 weeks today and he is definitely back to his old self. The one who likes to take Lucy's clothes from her closet and throw them in the toilet. :)
Monday, September 27, 2010
Sneak peek o cuteness
I LOVE Halloween!!! So yeah I couldn't resist dressing them up already. :) Isaac really likes his hat and wants to wear it around the house. I love it!
Thursday, September 23, 2010
2 year pedi appt - a little late
So in the midst of all that was the month of August I kind of forgot about the boy's 2 year pedi appt. When someone from the hospital called to discuss his upcoming tonsil surgery she asked if he was up to date on all his immunizations I realized I forgot - so two months late we scheduled an appt - and wow - he jumped from the 5th percentile in weight to 60th percentile - PANIC SETS IN. But I have to remind myself that first, its two months late (doesn't this count for something???) and the boy has been sedentary and off growth hormone for two months!!! I'm not really flipping out too much just yet - I just want to get my little man moving again! (and back on the hgh!)
So it made me extra specially happy to see my boy going wild today in PT and speech. He was back to his happy mobile little self. First, he said like 8 words he never really tried before and they actually sounded like what she was asking for. I swear the boy just tries to impress her. He loves her - its embarrassing almost. :) Then in PT he was sitting on the floor and getting himself up and then picking stuff up from out of our ottoman full of toys. This by far has been the hardest thing for him to get used to - using his arms to get himself up and around. Its like he hasn't figured out how to do it with the VEPTR in just yet. Plus he has such spindly little arms. But it will click - he's walking pretty well and all nosy and into everything like he was before :)
So it made me extra specially happy to see my boy going wild today in PT and speech. He was back to his happy mobile little self. First, he said like 8 words he never really tried before and they actually sounded like what she was asking for. I swear the boy just tries to impress her. He loves her - its embarrassing almost. :) Then in PT he was sitting on the floor and getting himself up and then picking stuff up from out of our ottoman full of toys. This by far has been the hardest thing for him to get used to - using his arms to get himself up and around. Its like he hasn't figured out how to do it with the VEPTR in just yet. Plus he has such spindly little arms. But it will click - he's walking pretty well and all nosy and into everything like he was before :)
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