Living with HPE
Eric Ryan was born w/ a rare condition, Holoprosencephaly,this is to share our struggles & joys as we live with HPE.
Entry for October 25, 2006
Ok, so yesturday Ryan had school. I was a little conserned because he had been acting as if he was coming down with something. (My nephews have been throwing up last day or so). Anyhow, we went anyways. While there he had 2 big seizures that lasted maybe a minute. For him that is major because the seizures he's been having lately last a few seconds. But after each he acted as if nothing happened.

We did an activity in the "gym" with the group where Ryan was put first under what looked like a colorful parachute. He waved it up & down to see if he would react. He just stared at it with a little movement. Then we put him on top & the parents & teachers lifted him up & swung him back & forth. Still little reaction. I guess the good thing is he wasnt scared right. Then they sat him in a tub of plastic colorful balls. I thought for sure he would get upset because they took off his socks & shoes. But no, he actualy seemed to realx more. He usually has his hands in a fist & in the tub he had them both open! After that we both got in the big ball pool where we sat together. This is when he had one of the seizures so I though it was too much for him at this time.

Next we moved to the "classroom". Here the put Ryan in this cushioned box thing to help him with sitting on his own. He did ok but after a few minutes he got angry & tried to arch his way out. We took him out & thry got out a rifton chair. I have a rifton bath chair here at home for him, but this was to help with sitting outside of the bath. He did really well! He didnt fight or even try to arch his way out! He looked like such a big boy! Of corse I got plenty of pictures & as soon as I find the connector Im gonna download them to out Family Album. The teacher then put a little tray that attaches to the chair & put pudding so Ryan could play with. This he did not like! He tried to hids his hands under the tray! He got pudding all over his shirt! She cleaned him off after a while & tried to get his to play with a push toy, no not having it! He started to cry & I thought that was enough for one day.

It was time to leave & we sang the normal good-bye songs & came home.What I really love about this school is that the parents really interact well. I mean most have different issues that are nowhere as severe as Ryan, but I feel really comfortable talking to them. All during class we are talking & sharing & having a good time!

Tomorrow Im going to visit a school here in the town where we live. Its for children 3yrs & up. The school Ryan is at now, is only up to 2yrs. Im excited about this new school because its 5fys a week & has a special class for tube feed children. Also a friend of my family works there.



2006-10-25 22:11:25 GMT
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