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Ryland William Jesse

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Ryland Dec 2003
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Just a little Pupdog

Visit my CaringBridge web page for more up to date information Click Here

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Hi, my name is Ryland William Jesse.  I was born on November 19th 2003 at 8:10 am in Luverne, MN.  I weight in at 8lbs 7oz and was 21.5 inches long.  My dad and mom are Nick and Summer Jesse.  I also have two older brother Nathan who is 12 and Mitchell is 9.  I am a really good baby and I love to have my brothers play with me.  I love to watch cartoons and Nascar.  I also love to be outside as long as it isn't to Hot out.    I almost never go to bed on time but I wake up with a smile on my face and am always ready for my breakfast.  The reason I wanted to have this web site is to keep family and friends updated on my Holoprosencephaly or HPE for short.  Back in April 2004 I had to have some testing done and the family got the news that I have HPE.  It's been already a long road for everyone and we still don't know everything and what's going to happen so I want to keep everyone informed as good as we can. 

MAY 27th 2007
Ryland is doing really good and is up to 27lbs, finally.  He's done with school for a couple weeks but will start Summer school in June.  If you read his Caring Bridge page you will have seen our interesting vacation to NC.  It's now summertime and busy with sports and just trying to get out more.  I am working part-time and am finding less time getting anything done.  I also starting selling Chenille bibs on ebay, not really to make lots of money but sewing lets me relax.  My ebay ID is rylandmom350 
That's about it, I hope we stay out of the hospital this summer.  We have 6 months till our Make-A-Wish trip, can't believe it's coming up so fast.  We will be there for his 4th birthday and will also be seeing my brother, his wife and my niece.  My brother will be in FL for a nascar race and my sister in law is going to drive down with my niece from NC and we are going to celebrate Ryland birthday together.  I can't wait!!

Dec 19th 2006
Ryland was sick last week but is doing better.  I don't get to this site often to update, so remember you can always go to www.caringbridge.com/sd/ryland to get more up to date info.  Ryland started school and he loves going.  The other kids who are all normal come up and give him toys all the time.  For pictures of him at school go to  www.dropshots.com/rylandatschool  We are getting ready for Christmas and the kids all want snow.  I know with in the next couple days they will be asking to open, just one present.  My brother and his wife are coming from SC for Christmas.  We are having a babyshower for them while they are here.  They are having a girl so I have been having fun shopping.  I am hoping we can go visit when the baby is born.  We will have to wait and see.  I will try to get some new pictures up and maybe some new video.  Ryland isn't doing anything different.  We do have a new pet, his name is Lenny, just like the Wonder Pets.

Sept. 4th 2006
Ryland is doing really good and has went 4 weeks with out a doctor appt.  We also finally got his Bronco Walker.  I put on video on his video page, make sure you check it out.  The only problems we have had lately is with the sleeping of course.  Some days are better than other.  It's starting to get busy again with Nathan and Mitchell being in football and getting back to school.  Nathan is in middle school now so it's kind of been a change for him.  Ryland misses them not being here in the morning but with his early mornings he's been watching cartoons in the morning with them.  We have Mitchell's golden birthday coming up on the 9th but are having his party on the 16th.  Well till next time.  Almost forgot Ryland started back at swim therapy last week, he sure missed it. 

Aug 3th 2006
Ryland had a Port-a-cath put in.  Has has done really good but sore from surgery.  I always say if he could eat candy he would have the biggest candy bar because he is such a tough little guy. 

July 1st-5th
Ryland spend the 1 thru the 5 in the hospital.  He got some Flu bug and wasn't keeping anything down.  We arrived at the ER at 5am and got into a room by 10am.  Kind of bumed that we had to spend the 4th of July in the hospital but Ryland like to do that.  You can read more at his Caringbridge page.  www.caringbridge.com/sd/ryland
 

July 23, 2005
Ryland is in the hospital for a feeding tube and a nissen wrap.  He is doing pretty good but wants to pull on the tube.  Read more at his caringbridge website. 

June 2006
Ryland has been doing pretty good.  A little viral thing the last month but it seems to have cleared up but now has a diaper rash.  Sleeping is getting better but he did wake up at 4am last night.  He is on 6 different meds now and they all seems to work out for him.  I now it will be hard this coming winter to keep him out of the hospital but I am going to sure try.
Ryland started Swim Therapy about 6 months ago and that is going great.  He loves the water and we are hoping this helps get him into some type of walker.  He also started OT, PT and ST twice a week for the summertime.  Ryland will be starting preschool in November when he turns 3. 
He is doing a little better at everything from sitting up to holding himself up on his hands and knees.  To get more updates on Ryland please fill free to visit his caringbridge page and make sure to sign the guest book.   www.caringbridge.org/sd/ryland

Ryland swimming with swim collar on
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May 2006

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Ryland and Clifford the Big Red Dog
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Leaving the Hospital day after surgery Aug 2006

Ryland Jan 2005
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Sitting up all by himself



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September 24, 2004
It has been awhile since I had undated Rylands web site we have been having problems with the computer and haven't been able to do alot with it.  Ryland is doing really good and everything is going good.  He had a MRI done a couple weeks and now we just have to wait to see what they have to say.  He has been having trouble sleeping lately but if he sleeps next to daddy or mommy he is okay.  If we put him in his crib he only sleeps for about a hour before he wakes up.  He is holding on to toys for a longer time now also.  He also is eating food that are more solid.  He really enjoys eating.  He misses Nathan and Mitchell since they started going to school.  I will write more later when I have time.  Written by mommy
 
July 28th 2004
written by mommy
We got the results back from the Carter Centers on Rylands CT Scan.  They said that Ryland has mild semi-lobar HPE.  They can't really say what is going to happen or how much it will effect him.  It is more or less a waiting game to see what the future will hold for him.  But with everyone helping him out and teaching him he will go far.  I may take twice as long or even longer but whatever it takes we will get him there.  It is sometimes hard to make him do stuff but that's what it takes. 
He is getting better at sitting, can't do it on his own yet but it is close.  He has rolled over a couple of times and before we know it he will be rolling all over the house.  The holding of anything is taking a little longer but he is getting more interested in holding his bottle.  He still eats great and we thank god for that.  He is about 20 lbs now and is growing really good.  Right now he is having problems with his temperature and he sweats a lot at night.  That is one of the things that they told us about that might happen.  They told us to also watch out for his sodium and fluid intake as that can lead to problems.  He is doing so good right now and hopefully that lasts all the way till next summer and for a long time after that. 

For more day to day update on me just click here and it will bring you to me caringbridge webpage. It is easy for mommy to update that site and you can also sign my guestbook. We will change this site from time to time and keep pictures of me updated on this website.

You can learn more about HPE at www.stanford.edu/group/hpe or just use search the web for holoprosencephaly

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