Wednesday, January 27, 2010

Looking Good!

Yesterday Eden had a follow up visit at Primary Children's to check on her progress since transplant, and everything looks great! So good in fact that they don't want to see her again for a month. I don't think we've gone that long between appointments since last July. Also she is now down to labs every two weeks instead of once a week, and wait there's more good news! We stopped one medication, will be stopping another on Feb 10th, and lowered the doses on two others. We are slowly working our way down to the day when she only has to take one, Prograf. I can't wait.

Now that things are finally looking good on the liver front we are starting to focus our attention onto some of Eden's other issues. Namely eating and talking. Thankfully her physical development has not been an issue. Suffice it to say she gets around, but she does seem to have some oral issues. We have been working with our local early intervention program on the feeding issues and have recently added some out patient therapy to our schedule. It may take some time but she'll get it. As far as speaking goes, this kid can make noise and occasionally I'll hear something that sounds like a word but that's as far as it goes. Yesterday we met with a speech therapist for an evaluation, and will be starting some monthly speech therapy. At her first visit we will also do a hearing test to make sure Eden hasn't had any hearing damage as a result of some of the toxic drugs she's been on. I have a love hate relationship with these drugs. They work wonders, but can have some nasty side effects.

Though we still some stuff to work on all in all things are looking good.


Emmy said...

Hopefully her hearing is all good. Thanks for the update

Jared said...

Thanks for the update. SO glad to hear things are going well. We will continue to pray that she doesn't have side effects.

Love you guys!

Anonymous said...

Hi there - I linked up to you thru Aria's site. Just to say hi. My son Cody had bowel failure two and half years ago due to malrotation volvulus - he lost most of his small intestine and a great chunk of large bowel and is thus far doing well on TPN but may face small bowel and liver transplant in the future but so hope not. anyho thanks for sharing your journey it helps people like me - Thinking of you - from Nelson NZ

Anonymous said...

Natalie (Cody's Mum) again - Your Children's comments crack me up - Cody is nineteen today so is past the child stage but still my baby - am so rapt he's still with me as was given a death sentence after his bowel failure but thankfully has proved the medical prognosis wrong thanks to some pretty timely intervention from a wonderful medical team - your children are beautiful

Belinda said...

Dylan spent his first three years being NG feed. He also had to go to speech to learn how to eat and talk. It was a very slow process, but he did get there in the end. I know Eden will get there in the end too, like Dylan she probably just want to "taste" the food first! LOL Great update though and keep up the good work Eden. :)
Belinda - LF