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Ryland William Jesse 
Welcome to Ryland's Web Page. It has been provided to keep people updated about Ryland's Holoprosencephaly(HPE for short)and just what goes on day to day. We found out about Ryland's HPE after a CT Scan done at his 4 month check up and also had a MRI at 9 months to get a better look at his brain. Ryland has Severe SemiLobar-HPE which is the moderate form but more at the severe end of semi-lobar. HPE is a rare birth disorder caused by the failure of prosencephalon (the forebrain of the embryo) to properly divide, causing defects in the development of the face and in brain structure and function. You can find out more about HPE at The Carter Centers web site. Thank You for stopping by. You can also check out Ryland's other website for more info.
Welcome To Holland
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a
disability-to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel.
It's like this...
When You're going to have a baby, it's like planning a fabulous
vacation trip- to Italy. You buy a bunch of guide books and make wonderful
plans. The coliseum, Michelangelo’s David. The gondolas of Venice. You may
learn some handy phrases in Italian. It's all very exciting.
After a few months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says
"Welcome to Holland."
"HOLLAND?!?" You say. " What do you mean, Holland ? I signed up for Italy!
I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
"But there's been a change of plans," says the stewardess.
"They've landed in Holland and there you must stay."
The important thing is you haven't landed in a horrible, disgusting,
filthy place full of pestilence, famine and disease. It's just a
different place.
So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people you would
have never met.
It's just a different place. It's slower paced than Italy, less flashy
than Italy. But after you've been there a while and you catch your breath,
you look around and you begin to notice that Holland has windmills,
Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and
they're all bragging about the wonderful time they had there.
And for the rest of your life you will say,
"Yes, that's where I was supposed to go.
That's what I had planned."
And that pain will never, ever go away because the loss of that
dream was a very significant loss.
But if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special and lovely
things about Holland.
Journal
Friday, July 18, 2008 10:02 AM CDT ~Sat. July 19th~
The new picture is of Ryland and Grayson, or should I say the twins, that's what everybody called them.
Okay, to start off Ryland did GREAT on the car ride. We got in Indy got some rest and went swimming later on Wed night.
Thurs was the day for appts. with the Doctor from the Carter Centers and the Nero. Cognitive evluation. Ryland did good and we learn so much more about what he could do. Ryland may not beable to walk but we were told he should beable to learn, the difficult part being since he can't say words or work his hands, it will be harder to know what he knows. Me, Nick and Ryland also got our blood taken for gentic testing. We wanted this for along time but never had the money to do it but all the appts and evuations were free.
Friday was a day full of the Educational sessions about HPE. There was so much to take in.
Saturday they had workshops and Sunday we left.
Ryland loved meeting new people but we were away from home so he was sometimes on the fussy side. We did lots of swimming and he loved that. He did okay with sleeping but again we were away from home.
On the way home we went to South Bend to see Norte Dame and also Chicago. Note: Don't drive through Chicago, go around.
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Sorry I haven't gotten a chance to update. I got our Family website updated but not Rylands yet. If you would like a link to our Family site just email me and I will email you the link back.
Here is a link to our Pictures from the HPE conference: http://www.kodakgallery.com/I.jsp?c=19av8ka4.4tv7zi0o&x=0&y=-dyd9v6&localeid=en_US
You should beable to copy and past. I don't have to many of me, but I was taking most of the pictures. There are plenty with Ryland and his friends, oh and swimming, which we did alot. Other families got some good ones also and I should be getting those uploaded soon.
Off, to OT and PT and CCHS.
Summer
Read Journal History
Hospital Information: Patient Room: At Home Sanford Hospital USD Medical Center
Sioux Falls,SD
605-333-1000
Links: http://rylandjesse.tripod.com Rylands other web site
http://nathanvisker.tripod.com Ryland's brothers website
http://quiltsoflove.com/quilt_2005/ryland_wj/ryland_wj.html Ryland's online quilt
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