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.

Above is how old all the Kids are

Sig © Clip Art, Inc

Free sketch at dumpr.net






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

Journal

Friday, October 10, 2008 9:41 PM CDT

I know some might be wondering how last weekend went. We had a Great time. On Friday there was Pizza and swimming. We had lots of Pizza and did lots of swimming. Ryland was having so much fun. Put him in water and he’s happy. I guess you could say we closed the pool (swam till the pool closed). I was really hoping that Ryland would do okay with being away from home but trying to get him to sleep on Friday was not easy.
Saturday was a busy day, it’s started off with a big breakfast and I guess you could say opening ceremonies for the weekend. The room were they had the breakfast was filled with balloons, if I had to guess about 300, tied to the back of the chairs. I wish I would have gotten a picture of Ryland when he saw all the balloons, it was like he eyes were about ready to pop out. After breakfast we went to Thunder Road (go karts, golf, rock climbing wall, stuff like that). My brother and mom also should up to help, my brother mainly to play with Mitchell and Nathan and my mom so she could watch Ryland while we all went on the go karts. Ryland could have sat there all day watching the Go Karts. There wasn’t much for Ryland to do but he did golf a little. I decided to do the rock climbing wall and yes I did make it up the Med hard wall. We went back to the room after Thunder Road and did a little swimming before heading to the Fair Grounds for the Bull Riding show and supper. We did stick around to long at the Fair Grounds because Ryland was getting alittle fussy but once we got back to the motel and he saw the pool he was HAPPY again, silly child. So we did some more swimming before bed. I knew it was going to be hard to get Ryland to bed and I was already tired from Friday night bedtime, so my mom stayed the night to help. I wish I could say I got a good night sleep but the Motels Fire Alarm went off at 4 am, yes the fire alarm. The only good part about it was is Ryland didn’t wake up, I acted fast enough to get a pillow over his ears and more him to the most quite part of the Motel room. They was no fire, I heard someone set it off.
The weekend ended with breakfast and more swimming. Mitchell had a Football game on Sunday as, the team won, so the weekend ended good.

Now for this week. Not much new to report. Ryland had school, swimming, PT and OT, all is about the same. I had a interesting week, I got bit by our neighbors dog, on the butt, so I had to go get a tetanus shot and be put on antibiotics. The only good about that was Ryland wasn’t with me, him getting bit wouldn’t have been much worse. Mitchell had another Football game on Thursday, they won so they keep on going with the playoffs. Nathan had a game but I didn’t make it to the game since it was out of town. I’ve been busy with making bibs, I’ve been getting more orders with all the Holidays coming up, you can search for them on Ebay by searching Rylands HoPE Boutique. You can also Email me if you need a Bib, Burp Cloth or maybe even a blanket.

Not much planned for the weekend. Nick works all weekend, which he usually does. Mitchell has a birthday party to go to, so me and Ryland will just be hangin out. If it’s nice enough we will probably go for a walk, speaking of walks. Between OT and PT on Friday we have 40 mins so I thought I would run to the Dollar Store which is 5 blocks from CCHS, me and Ryland walked down there, since today was so nice. It was funny, the street (41st) we have to walk down is a very busy street in Sioux Falls, well Ryland just loved it, watching all the cars go by and motorcycles were the best to hear go by. That’s about it.

~Summer

Read Journal History

Hospital Information:

Patient Room: At Home

Sanford Hospital USD Medical Center

Sioux Falls,SD
605-333-1000

Links:

E-mail Author: rylandsmom350@yahoo.com

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