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My Story

Welcome to our CaringBridge site. It has been created to keep friends and family that really care about Ryland, updated on how he is.

Ryland was Dia. at 4 months with semi-lobar Holoprosencephaly. If you want more info you can check out his other Caringbridge page at www.caringbridge.com/sd/ryland or http://rylandjesse.tripod.com

 



I'm making the switch to the new caringbridge but will still update the older one from time to time.  It does have the beginning of our journy with HPE.

Oct 2009
I had a great pregnancy with Ryland and he arrived Nov. 19th 2003 a healthy baby boy. Little did we know our life would change at his 4 month checkup. I can still remember that day, well that week. The doctor wanted to do a CT scan the next day after his checkup and when we received a call that same day we knew something wasn’t right, so the next day after the scan we went in and were told that there was something wrong with his brain but would have to see a neurologist to find out what it was. So two weeks later we got in and found out, I had already been searching the internet but didn’t want to believe that he had something that was terminal and there was no way to fix it. I still remember that day like it was yesterday, Nick had to go back to work after we found out so we went to my moms and I remember crying for hours and hours and till I finally fell asleep. I remember thinking what are we going to tell Nathan and Mitchell who were so excited to have a little brother to play with, someone they could teach how to play football, baseball and video games to and now would they every get to.

Now over 5 years later and after many doctor visits, therapy appts, hospitals stays and ER visits, I really don’t remember many of them but I still remember those first doctors appts. When we were told our son, if he lived would never do much because of he brain malformation. All I can say is boy he’s proven many doctors wrong, things have not been easy but looking back I never thought Ryland would be this far. Walking in a walker, rolling over and moving around the floor to get to places, loving- books, racing, cartoons, toys, sports and just get attention, using a power chair in PT, using switch toys and communication devices, now learning number, letters and shapes. He doesn’t say words but he can talk and talk and tell you what he wants. I never thought I would have to worry about him getting into things like the Christmas tree but I do, once it goes up he spends everyday we have it up trying to get to it and also getting into the presents and yes trying to open them.

 

I can’t wait to see what happen in the next 6 years.


Journal

Notifications

Been to long

May 2, 2012 8:47pm

Sorry it's been so long. Things have gone good over the winter and even though Ryland was sick off and on about 4 times we were able to keep him out of the hospital but did have a couple close calls.

Nov.  Ryland 8th birthday, went pretty good was so hard to believe he's 8. Thanksgiving went great and this year I stayed at home for Black Fri. did shopping online.

Dec. seem to come and go fast Christmas was great and glad to say we didn't over board. The weather was so nice it was hard to get into the christmas spirt.

Jan. wasn't much going on either, Ryland did get sick and we were in the ER one night, that was a nightmare because we didn't know anyone, I was not happy with anyone that was working, they didn't seem to want to listen. Ryland was good a couple days later but for him when he gets sick it always takes another week for him to be better. Jan. also brought getting things ready for Vera's 2nd birthday which I got done. Finally got some snow.

Feb. Vera's 2nd birthday, we went swimming. Ryland only cared that there was balloons, oh and cake.lol  Weather was still nice.

March  Had some nice weather and this march marked me and Nicks first date 10 yrs ago. I guess time just seems to be going by so fast I don't know were the winter went, but weather was so nice.

April Easter was early so it was like part of March was April with getting things ready for Easter. April was a busy month with Nathan, he turned 17, we went to look at a college and he had Prom, that was fun.

So here we are at May. Looking foward to a busy summer. Baseball for Ryland and Mitchell. 4 Wedding in June and one we are going to is in Denver for my best friend who I have know for 30 years. Ryland is going to be a groomen and Vera a flower girl. It's going to be great I've never been to Denver. July we are going on vacation. I know it will go by to fast and then Aug we will be getting school supplies again. Ryland will be going to CCHS next year.

With having a busy summer and stuff going on we are hoping to raise some money to get Ryland a Ipad. Our laptop no longer works unless it's plugged in.  So I created a ChipIn account to raise funds for the rest. any amount will help.

Summer

http://rylandjesseipad.chipin.com/rylands-ipad



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Healthcare Facility

Sanford Health-Sioux Falls
1305 West 18th St.
Sioux Falls, SD 57105
United States