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 August 30, 2006

At about 4:30am Eric Ryan woke up with a stuffy nose. It was bugging him so much he became angry & couldnt sleep. Yesturday at theropy he kept sneezing but I didnt think anything of it. Well, all day today he's been struggling with a stuffy nose & sneezing. Im not too concered at this point because the boogers are clear & he doesnt have a fever. But we have been giving him nebulizer treatments all day to help break them up so he can breath & it really seems to be working. Its funny though, when he sneezes you better back up or he'll spray you!


We we're supposed to go to pick up his Afo's for his ankles today at 10am. I was so tired, only had about 2hrs sleep, that I had the nurse rescheule. So, we ended up going at 1:30pm. Whenever I thought about them, I pictured the ones the boy had on Forest Gump! But no, the have no metal. The doctor even but Spiderman on the back of them. Im going to go get some alphabet stickers & put Eric on one & Ryan on the other. Eric Ryan let him put them on without any struggle. As we were walking out I guess he just realized they were on & got so mad! You could see him trying to straighten his foot. He's so strong that I think he might be able to figure out how to kick them off. So for now I've been leaving them 1hr on & few hrs off. They are mainly to keep him foot at a 90 degree angle that way he doesnt keep his foot pointed & it get kindof stuck that way.


We had a pretty rough night uptil a little while ago. Eric Ryan just couldnt get comfortable & wasnt liking it at all. Hes still not completely asleep because he stirs every now & then but he's brathing very clearly.


I better take advantage & hit the sack.....

2006-08-31 04:51:46 GMT
Comments (1 total)
Author:Anonymous
It only took Ryland a year to figure out how to get out of his AFO's. We had to go get them ajusted and now he can't get out but it funny because he trys to and he just can't. When Ryland does the toe pointing we call it, prancing. Ryland does really good with his braces now but before he really hated them.
Hope you get some sleep.
--Summer
<http://rylandjesse.tripod.com>
2006-08-31 06:50:13 GMT
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