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. Rylands new caringbridge site www.caringbridge.org/visit/rylandjesse

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

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Journal

Sunday, June 28, 2009 8:32 AM CDT

I know it’s been almost a month but we’ve had a very busy month with baseball games almost everyday and still having all of Rylands appts on top of that. Ryland had his last game on Saturday, hard to see it over with since he loved playing baseball. Nathan and Mitchell still have baseball for a couple weeks. It’s been a little rough since it’s been so warm out and Ryland can’t handle the heat. I don’t mind sitting out it 90 degree weather but Rylands body can’t handle it. Below is what I typed to the HPE yahoo group, I didn’t want to have to try to retype it again but we got a letter that says Ryland doesn’t qualify for the Disabled Children’s program.

**Since Ryland was a year old we've always qualified for the Disabled Children's Program here in South Dakota, it's his back up medical Ins. Medicaid So on Sat. I got a letter saying he qualifies for the disabled part but not the health part, yes you hear me right. So now we are going to have to fight to get that turned around because there is no way we can afford what our Ins. doesn't pay. The months he doesn't have lots of extra doctor visits or hospital stays it's still around $800 that Medicaid pays, if he were to get sick and we have to go to the doctor and if he ends up in the hospital it's going to be in the $1000.

It's bad enough right now we are going through bankruptcy because we can't pay off medical bills that we have right now.

No he hasn't been in the hospital over the last year but I've fought hard to keep him out. I've had many nights were I was lucky to get any sleep just so he won't have to go into the hospital. I didn't go to school to be a nurse and I don't have a degree but when it comes to taking care of Ryland I know way more then any nurse would know that's in the Hospital.

I just don't know what to do. I already have so much going on and now I'm going to have to call all or Rylands doctors and see what they can do to help me out. Of course I had to get the letter on Sat. so there's nothing I can do till Mon.

Just this past Mon we almost had to take Ryland into the ER at 2am because he was throwing up because to the heat but I stayed up till 3am with he to make sure he stopped getting sick and made sure the fluids going through the tube were just the right amount that wouldn't throw up. Yes I could have taken him in and we might not have been admitted to the hospital just stayed in the ER but Ryland also seem to do worse when he is in the hospital, even going for a visit he gets worked up.**

So after spending hours filling out the form to keep him on he now doesn’t qualify. We’ve had a pretty good month with everything going on and June has gone by fast and now this to deal with over the next couple weeks. If anyone has any helpful information let me know, I’m gonna need it.

~Summer

The picture is Ryland at the races in Hartford, he loves racing, uncle Danny is trying to hold him

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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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.