Just a little Grandma Pride

[Grayma]

I've mentioned my grandson with special needs here before. When he was born he was diagnosed with a rare genetic disorder that kills most kids who have it in thier first two years of life (something like 80% don't make it beyond the age of 2). Those who make it past two die of kidney failure in their teens.

Anyway, that's NOT what he has, and what he actually has is now treated with medication. However, one of the issues with his disease is that he had severe hypotonia because his nerves and muscles were unable to communicate well with his brain. With the new diagnosis (they found out what was really wrong three months ago, around his first birthday), he's making lots of progress.

He's also signing, which we think he couldn't do well before because of the muscle weakness. He's been signing things related to his food- more, eat more, more please, eat that, more that please, eat more please (notice a theme, here?) He's only just been able to eat by mouth the last month or so, and still takes in his formula by a g-tube.

He's signing "Daddy's at work" this week, and last week, when he was signing 'Daddy' to me because he wanted me to take him to his daddy, he got frustrated when did not get him to Daddy fast enough, and he leaned over and firmly signed DADDY on MY face.

I love that sign language allows him to communicate when he has so many other limitations.

 

[rockin'robin]

Seems he's got you around his little finger!... And it's really great he is doing so well. Remembering my 1st grandchild. I went to get him on Friday night when I got off work and kept him until Monday early evening. He was the apple of my eye and spoiled so rotten.

 

[Reba]

 

[Anij]

Wirelessly posted (Blackberry Bold )



What did they think he had before?

 

[Grayma]

Before they thought he had something called Jeune Syndrome.

He is our second grandchild (we have four, with a fifth on the way), and they all have us wrapped around their chubby little fingers.
But there's just something about spending the first year thinking we could lose him almost any time, and partly because The first 51 days when he was in the NICU, part of that his father couldn't get off of work, so I stayed with my daughter and grandbaby to help out....