Life with holoprosencephaly
We had a wonderful time at the baby party today. The babys are getting more beautiful, mobile, engaging, and are starting to enjoy each other more and more. Nate sat by himself for about 2 minutes!
Here are some videos:
Here are some pics:
We are SOO excited. Today we took Nathan to UCLA to have him evaluated for their early intervention program.
Of course the therapists fell in love with him, and he loved it as he was the center of attention for all of us.
I was thrilled at what I saw. They seem extremely knowledgeable and have all sorts of equipment and ideas on how to maximize his potential. They commented on how aware and smart he is, and the fact that the main problem is the connection between his brain and his body. He knows what he wants to do but his body doesn’t cooperate. So they were talking about finding ways of helping him experience lots of things to stimulate his cognitive growth while training to improve his movement problems.
All in all it was very positive and I left in tears feeling that we’d found the right place /program for him. Unfortunately we have to give up having Nate’s child development specialist Dena coming to our house, which I am bummed about as she is wonderful. But it was the only way to get the funding through Regional Center.
We are going to take him there twice a week and they are going to do a little bit of PT, OT, child development, music stimulation, aquatic therapy, and anything else that they have available. They have lots of equipment too and are going to give us advice on what equipmen to buy, positioning, helping him improving his oral skills, etc.
I will post photos next time we go.
Here are some pictures of the last few days. We went camping last weekend but I forgot the camera. So sorry no pics. But he enjoyed being outdoors a LOT and didn’t mind sleeping in a tent with Lucas and Lola and mom and dad. What a trooper.
At the circus
sad clown
At the audiologists office. They said he may have some hearing loss but it’s hard to determine as he still has an ear infection.
new feeding chair
practicing crawling!
Nate’s head control is getting better!
We put him in the swing and he sat all by himself!
He also practiced walking:
And he played with a balloon:
He also watched the sunset at the park:
But most exciting is…he was able to bear weight on both arms, in crawling position, for about a minute or two! Go Nathan!