Update added: July 17, 2005
I feel like it is time that I should add the last little bit to her page.
Haley was doing very well for a while and then she took a turn, the J-button started to not work and she had gotten what they call dumping syndrome so we were having explosive diarrhea at least 6-8 times a day. They were trying different things and a new eating schedule along with medicine. It just became to much for Haley to handle she had gotten to where she was in pain alot, we couldn't touch her stomach or hold her tight, we knew at that point something wasn't right. There would be times where her stomach would be so blotted you couldn't stand to look at the poor thing. We tried many things and medicine, none of it worked no matter what we tried or what deciscions we made. Then on March 29th 2004 we put her to bed like usual and went in to check on her about midnight and she was bloated more than usual and she had some blood coming out of the stoma sight. At that point Tim and I knew something was wrong we took her to the hospital in Omaha, and by that point she had started to get a fever and was having a tremendous amount of trouble breathing so they had taken her in for testing. By that point I guess it was to late, she was in x-ray and she started to crash, the doctors came in and told us they had to get her to surgery right away. For the first time in our little angels life we heard from the surgeon that she might die. They would do what they could for her. Off she went, while we were waiting in the waiting room the nurse came out and told us the doctor wanted to talk to us, At that time we knew what was wrong. He came in and told us that her intestines had kinked off and was filling her body with infection. We had 3 choices, we could take them out and let her live on TPN the rest of her life (which they couldn't tell us if it would be a week or 5 years), and they didn't know if she would be able to breath on her own again, or option 2 was to try a transplant which at that point they weren't very successful in adults let alone a 4 year old who didn't have a whole lot going for her at the time, and our last option was the worst one, we could keep her as comfortable as we can and let her go. They gave us 24 hours to decide. That was the worst day of our lives. That night she just got worse, they were having to give her platlets, blood, calcium, everything that her body was suppose to make for her, at that time Tim and I decided that enough was enough. The next day we told the doctors what we decided to let her go. The worst thing we ever had to do or watch, at that point they started taking her off of everything and stopping all efforts to help her. She was such a fighter even throughout the day she kept fighting to stay here with us. At 8:06 that night on the 30th she died. If you are reading this and ever have these things come up in your life the one thing I can say is to only make sure you are making the right decision for your child.
WE LOVE HER STILL AND ALWAYS AND WILL NEVER FORGET THE JOY AND LOVE SHE BROUGHT INTO OUR LIVES.
Please if you have any questions or comments feel free to email us at tjewell@neb.rr.com
Rachel Jewell
Below is Haley's original web page.

19 months old
Haley  was diagnosed at 15 months with RTS when we were sent to a developmental clinic. She has the broad thumbs, toes and a high palate. When she was 4 months old our family doctor noticed things about her that she wasn't doing and she should have been. We then went to see a specialist and they diagnosed her with choreoathetoid cerebral palsy.
She has had alot of medical problems. She was having alot of feeding problems and failing to thrive so she had an NG tube for a while but she kept aspirating when she ate and things didn't get better so they put her G-button in on Jan.24, 2001. She has since then really started to grow, she now weighs almost 20 lbs. She has also had alot of trouble with pneumonia and C-difficile which is an intestinal infection.
She has just started to try and crawl, she is not talking and doesn't make much sounds. She has just had adenoid surgery which they thought would help her breathing problems but it hasn't done much good. She is now getting breathing treatments up to 4 times a day. She is a beautiful, happy and wonderful child, we wouldn't give her up for the world. We are going to be getting a KidKart stroller for her on July 9th, we can't wait it will give her a little independance and help us out too. They don't know if she will walk or not, but we are optimistic she will at least be able to use a walker. Her speech therapist is going to try to start teaching her sign language. This is such an unkown disease some days we really don't know what to do. Anyone who can offer in help, support or information can feel free to email us.

20 Months Old:
UPDATE - July 31, 2001

Haley is 20 months now and was just diagnosed with a strabisum and she now is wearing glasses all the time, but it has already started to help her so much with her eye sight.

2-1/2 Years Old: UPDATE

Haley is now 2 1/2 and doing pretty good. Since we last wrote she has been fitted for some braces for her hips which were sublexing but are now doing  better.
She is pulling her self up to stand wonderfully and will even take a step or two with a walker. Then on January 25, 2002 she had a tracheostomy.  Her breathing was getting worse and we had tried everything else we could think of. It has really helped her alot as bad as I hate to admit it. It is  alot to care for but she is well worth it. We have had a few infections off and on in her lungs but it is alot easier to keep her well with the trach since we can keep her suctioned. She started to have some more feeding  problems in April and she just had a J-tube put in on May 19th. This bypasses her stomach so it is better for her digestion process and so far it has worked great. Haley is still learning her sign language she now  signs about 5 words but we will get her there. She is up to 28lbs.  in weight and looking good.

Email Rachel Jewell at jewelltribe@yahoo.com