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 Monday April 2, 2007
Ok where to start.....I guess I can start with theropy on Wednesday...didnt go so well. Well, I cant really say that. The thing is Ryan would not wake up! We tried for half an hour to wake him up. He would stretch & groan then fall right back to sleep. So he didnt get anything accomplished. But they did but him in a swing with a tire on it then they put a bean bag on top of that & layed Ryan in it. He looked so cute! They swung him around & nothing!

The rest of the week is sort of a blur but we did have a great weekend!

Big Eric took us to Pismo! We left Friday after he got out og work...oh that reminds me....

Friday morning we went to the Childrens Hospital for an all day videa EEG. This monitors his brain waves & seizure activity. We were there from 7:45am-4pm! I was going crazy! Ryan went into sleep mode & woke up only a few times for a few mintes. He had 1 seizure that I saw. We go in a few weeks to review the results with his Neurologist. Hopefully we wont have to change any of his meds.

Ok back to our miny vacation....

We headed out about 6:30pm. It's weird because Eric hates driving long distances & I get car sick, so I drove & it all worked out. I was a little nervous because its about a 2 1/2 hr drive through mountines to get there from where we live & it was getting dark. Thank God we got there safe & had a good nights rest. The next morning we checked out of the hotel & had a really nice day walking along the peir & shoping. It was funny because Ryan would be awake when were inside stores or eating then fell asleep as soon as we went outside. He stayed awake a little along there pier which was nice. But all in all he had a great day with only a small vomiting spell while we were eating. We got home around 9:30pm that night & he slept really good.

Today we had an eay doctor apointment for Ryan. It went pretty much the same as in Texas. The dr said he has very poor vision & gave a new perscription for glasses. I was so excited because we ordered him these sporty glasses & I found out Medi-cal will pay for the transition lenses!

2007-04-02 22:18:56 GMT
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