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| Day+ 235 |
| December~2~2000 |
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| Happy December everyone!We hope all is well out there! Things are pretty calm around here,thank goodness!I thought I'd just do a quick update and let everyone know that we finially got Jennas t-cell-b-cell function studies back and she is not ready to come out of isolation yet.She has great b-cell function but her t-cells are no where they should be for a normal immune system.This is totally normal for only being 7 months out when they drew the blood,they just wanted to try so she might be out for Christmas but she is not ready.This is okay with us.We would still have been nervous anyway.I know we would be really scared if she caught something right now anyway.Better safe than sorry.This is also the start of flu season so that makes it even more scary.Her regular blood draws look real good and we are so thankful she is doing so well,we couldnt be happier. Our friend Kade in Utah did not graft with his transplant.He went through a mini-transplant and a normal transplant and now the doctors are conferencing on what route to take next and I guess which protocol to use.We pray that they make good choices and get this little guy engrafted.His dad Adam has been there with him for 84 days now and no sign of when they will go home,so it looks like Christmas at the hospital for them.Adam has such a positive attitude and is just happy that Kade is feeling more like himself these days.That is great!We are praying for you sweet boy!! I have been working on getting another web page started that is basically a link page with all children of Hurler syndrome and when you go in you will see each picture with links to their own web pages and /or e-mail addresses.Craig Wigglesworth suggested we put some info, like when and if they had a transplant and where,which is a great idea,so I am open to any more suggestions as well.This way we can get it published and when people go searching for information they will have access to everyone.So if anyone out there has not been contacted please e-mail me and get me some information and a picture so I can add it to the page.Also if you do not have a scanner or access to get a picture on the computer, please let me know and i'll get you my home address and you can send it to me via the post office and i'll scan it.I have gotten great response to this and I would like to get as many families involved as possible;)Thanks! Okay so this wasn't as short as I thought! We hope everyone is doing good and enjoying getting ready for Christmas! Take care, Love, Kristi,Randy,Lindsay and Jenna |
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