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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.

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Wild Water West Aug 2008




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.

Geo Visitors Map






Lilypie 5th Birthday Ticker
Lilypie 6 - 18th Ticker
Lilypie Kids birthday Ticker

Above is how old all the Kids are


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Digital Cameras Fun
Free sketch at dumpr.net






*HUGS* TOTAL!
give Rylandjesse more *HUGS*

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GoodSearch: You Search...We Give!

Who do you GoodSearch for, Families For HoPE (Indianapolis, IN)






We have a NEW Family Blog, if you would like the link email me and I will email you the link back.

Journal

Thursday, August 28, 2008 1:34 AM CDT

Ryland has been doing pretty good. He started swimming back up and he was pretty happy about that. We went to Wild Water West on Sunday, the water was a little cold so Ryland didn’t get to do a lot of swimming. We went around the lazy river a couple times and he liked that. Me and the boys all went along with my mom and brother Danny. It was nice to have mom my watch Ryland while I got to hang out with Nathan and Mitchell. I think I was the only mom going across the floating Lily Pads and Alligators but the kids got a kick out of it. Ryland really enjoyed just checking things out.

On Saturday we went to the Open House of the new Make A Wish building. We had fun and Ryland loved all the attention. It was very nice out and the weather was perfect for Ryland.

The last couple weeks it’s just been getting the rest of school stuff purchased, doctor appts and going to Ryland different therapies. We’ve been working on different colors with Ryland and he now has yellow and pink down. We have also been working on choosing different things, just two things at a time and he’s been looking and also been getting him to try to touch what he wants, it may take a couple minutes to get his hand to touch it but he works really hard. He has a power wheel chair assessment coming up and we are hoping he can get the figured out, how cool would that be if he would have more independence. I know he can do it but it make take longer than the therapist can work on it. If he does get it figured out and Ins. would pay for a Power Wheel Chair, then we would have to get a adapted Mini Van with a lift (anyone have $20,000 laying around) used ones that are 5 years old go for about that. Some thing will come up when that day comes.

I am really looking forward to the next couple months of therapy, just to see what Ryland can do. I’m determined to get him to know his colors by the end of this year, maybe even start on some shapes. We may have hit a little bump with colors, he had trouble with some, so we are thinking he may be a little colorblind. No way of really telling. Might also try to get Speech at CCHS fit into our schedule, may have to wait till Football is over with.

Speaking of Football Nathan and Mitchell will be starting there games soon. I know Ryland will be happy, since he loves the noise and the action of the game. He loves the loud parents.lol

Hard to believe Ryland’s Birthday is less than 3 months away. Hoping that he will be in a new bed by than. If Ins. Doesn’t pay for one we are looking at getting a bunk bed with a full size bed on the bottom and a twin on top. We would have to make a couple adjustments to get it to work but I have some good ideas. Nathan and Mitchell are always wanting to sleep with Ryland.

*If anyone is wondering what Ryland could use here’s a couple things. AA rechargeable batteries, Dr, Brown size 3 nipples (he goes through a lot), long socks from Old Navy, Children’s Place or Target for his braces he wears a size 7 shoe. Money always helps, that way we can get toys that will work for him, most adaptive toys are $40 or more. He’s still loves the Wonder Pets, Wiggles and Little Einstein’s, DVD’s are always helpful. He also has a TJ Bearytales and could use a couple new books with cassettes.

One more thing. It was Ryland’s first week back at Preschool. It’s looking like it will take a couple weeks to get him back into the swing of things. He’s doesn’t like change. Well, I’ll try to post some new pictures.

~Summer

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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


 
 

E-mail Author: rylandsmom350@yahoo.com

 
 

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