Monday, February 21, 2011

Long over due!!!

Hey there! I know, I know. I'm a terrible blogger!! I apologize for not being better about updates! Speaking of updates... we have quite a few!! First off Jaylee was able to get her central line out which was a big deal! We no longer have to worry about it getting infected or pulled on or broken! Which also means she is no longer on her TPN and she is pretty much off all her medications! We are slowly bringing her out into the world and she is finally able to play with her cousins! We are still working with physical therapy for her motor skills but she is getting better. I don't think she will ever crawl but she sure is a scooter!! She has lost a lot of her "Steroid weight" and looks much better! We are having so much fun being a family at home! It's hard to believe we are at the tail end of this all. It has been an experience we have learned so much from and we are so thankful for all those who were there for us! We love you all!!

Sunday, November 14, 2010

New stuff

Hey everyone! Just a quick update, thing are going well!! We have been home for two weeks now and it has been great! It is so nice to finally be home and a family again!

We are still working on stuff with Jaylee, IE: getting her to eat on her own so we can get her off her TPN, physical therapy to get her moving like crawling and standing. And just getting her used to being home.

We are going down to St George for Thanksgiving and are SO excited to finally get down there with all three of us together.

Well that's about it! It's nice to finally have very little to say. :-) We love you all and are thankful for all the prayers on our behalf!!

Wednesday, October 13, 2010

Good News!!

So we have some good news this time around! The Adenovirus that has been giving us so much grief these last couple of months was NOT DETECTED!! YIPEE! This is great news! The Adenovirus has been the key factor in all these problems the last couple of months and it is FINALLY being treated and conquered!! Jaylee's belly is a lot smaller and actually looks normal, instead of looking like a Buddha belly! She has been doing so good these last couple of weeks that I truly believe we will be getting out this week!!

We still had a couple of bumps in the road though. About a week and a half ago we discovered she had an Ulcer on her stomach that they had to go down with a scope and cauterise it. Luckily the procedure was quick and easy and Jaylee bounced back quickly and is doing great now.

Jaylee has still been throwing up quite a bit and after doing some tests, they found that her Sphincter (SP?) that keeps stomach acid in her tummy is a lot more open than it should be and so she may have to have surgery to fix it in the near future. The doctors have reassured us that it is a very easy procedure and is easily fixable. We will probably figure out if she needs it in the next couple of weeks.

The doctors and Jeff and I are starting to talk about goals long term now. We are working on getting her off the TPN (which she gets her nutrition from) which can cause long term liver problems and also working towards taking her Central Line out! Things are starting to improve tremendously (and it's about time too!) we are so excited!

The light at the tunnel is finely starting to get closer and closer! Even though this has been a very hard struggle, I am grateful for all the support everyone has given us! Your prayers have made this journey a lot easier to handle and we love all of you guys!

Monday, September 27, 2010

New Pic's!

Here are some pic's of Jaylee. She has been in such a good mood lately and you can tell by the way she acts with people! We have also been doing physical therapy with her and she is doing really well. We are getting closer to getting out but we aren't holding our breaths! Thank you everybody for you prayers please keep them coming! Love you all!