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.

Thursday, January 21, 2010

Eden's Yucky Old Liver

So we finally got the pictures of Eden's old liver from medical records. Beware its not very pretty. Its amazing that she was still functioning and happy with that thing in her. I am just happy that she now has a nice pink healthy liver inside of her, and what a difference that has made. She is doing great and getting into all sorts of mischief like throwing my cell phone into the garbage can. I didn't realize she had done this until after I dumped the garbage can and took it out. She is a bright little girl and always laughing. Its like she has her own little inside joke.

Her new liver is doing great! I got a call from her transplant coordinator today who said her labs from earlier this week look "fantastic." Music to my ears.

Thursday, January 14, 2010

A Liver for LuLu

This morning one of Eden's little liver buddies got the call that there is a liver waiting for her. She has been at the top of the wait list for just over a month now I believe. My prayers are with LuLu, her family and her donor's family as well. There is a link to her blog on the right if you would like to see a picture of this sweet little girl.

Sunday, January 10, 2010

Two Months Post-Transplant

Eden is now officially twenty months old (as of the 6th) and two months post transplant today. She continues to do very well. She is going everywhere and this past week finally figured out how to go down the stairs. She is still not talking but shows me in new ways each day that she definitely understands what we are talking about. Oh and she has started with the temper tantrums a little early so I can only imagine what the terrible twos are going to be like with her.
As far as eating goes she is still not eating much, but we are continuing to work with Kids Who Count weekly and will be having an evaluation for outpatient feeding therapy on the 20th.

All in all life is starting to feel a bit more normal. I am so grateful for where we are today and for the many people who have helped us get here. Our great families, neighbors, and friends and all of Eden's wonderful doctors and nurses up at Primaries. We love to see them up there especially now that we are only going for short visits. :) Right now she only has to go back every two weeks and before long just once a month. Can you imagine that?

This is a picture of all of her meds that she takes every morning. She gets about half of those at night as well. I can't wait for the day when she only has one.

Aunt Carrie came to visit this Friday and we had some fun with curlers. They didn't last long enough to dry well so no cute after pictures.

And just now as I was typing this post she reached up and pulled the whole bag of goldfish crackers off the table. As you can see she wasn't to pleased that I wanted to takes a picture of her with her mess.