Enjoying life

It has been entirely too long since I have made an update on Ember.  I really think that it has been out of mommy being lazy and well, there has just been life happening.  Nothing really liver related.  Well, that's not entirely true.  We are still doing monthly labs.  They continue to come back normal every single time.  We are truly blessed.  Also, on July 9th, Ember had what is called an IGFR test.  The way it was explained to us is that it is a test that will help determine her kidney function.  The reason she had this test is because her medicine can damage her kidneys.  Her test came back completely fine.  We have no worries. Very much a relief.

While we were getting her test done, I noticed a Dr. that looked very familiar to me.  I didn't mean to interrupt him, but I was SO excited to see him.  It was Dr. P.  The Dr. that helped to diagnose her with BA almost 2 years ago now.  It was such a treat for me to get to introduce her to him as the thriving 2 year old she is now.  I don't think that he has seen her since her Kasai procedure.  He was always so sweet with her.  He would come in and just talk to her and caress her hair as she was sleeping or just lying in bed.  I really felt like he cared for her as if she was his own.  She was just a tiny 11 week old baby then and now she is a active toddler.  I wrote him a quick thank-you note with her website address on it and gave it to him before we left.  We found out that after that week, he was moving.  Children's lost a great Dr., but another hospital has gained him and I hope they know how lucky they are.

Other than that, we have just been having a normal life.  It's funny how I always thought that I would never be able to say that about her.  I was SO wrong.  Ember is absolutely in her 2's.  She throws tantrums, tells us "No, no, no" A LOT, and loves on her sister more than I could ever ask.  We also had a photo shoot with some other BA families since I have updated last time.  It was so great to get to meet others that were pre and post transplant.  She was her usual self.  There is even a picture where she is holding her hands out to hold a small baby named Willow.  We kept telling her that she couldn't hold the baby! Ember didn't care, she was determined to hold her.  She settled for touching her and saying "Awww Baby" a lot.

She has been incredibly understanding with her sister as well.  Four weeks ago I fell with her and ended up breaking her leg.  She has been in a cast of one type or another since.  Ember has had to deal with mommy showing a bit more attention to sissy because of that and all in all she has been great.  There have been moments where she earned herself time out, but I think that is the 2 year old in her.  Tomorrow we go to get the cast off and I am sure Ember is in for a reality check.  I truly think that her sister is going to give her a run for her money! 

On a sad note, we did learn that her donor's family moved and left no forwarding address with the Organ Procurement Agency. It was a very sad day for me.  I had envisioned so many times getting to introduce Ember to the family.  Getting to let them see they type of little girl she is growing into. The compassion she feels, at 2 years old, for others.  I knew that it was always a possibility that we would never meet them, but I hoped that wasn't going to be the case for us.  I have decided that we are going to continue to write letter's to her Angel, but we will save them just in case we end up hearing from them.  And if not, maybe they will help someone else find the words to write to their donor family. 

I hate to leave this update on a sad note, so here's a cute thought.  Ember's hair is now just long enough to put into pigtails!  It is the most adorable thing I have seen yet!!!!  I will try to post pics soon.

Meeting new friends is good

Last week when Ember got her labs drawn, everything was alright with the exception of her white blood cell count. It was on the low side so they asked for us to come back this week and get them drawn again. So, that is what we did yesterday. We also were asked to visit with a family who was here from Indiana for a transplant evaluation.

Their little boy has BA and needs a transplant as well. It was nice to get to share Ember's story and hopefully help them feel a little better about Transplant. I think that the first thing that I said to them was that Transplant is scary, but in the end it's worth it. Hopefully seeing Ember as healthy as she is now helped them feel better also. I am so glad that we got to meet them. I really want to be able to help others who are going through this as much as possible. I know that Liver Families and The Patterson's helped us get through the toughest time. Hopefully, we can do that for this family.

Also, I got Ember's labs back today and her WBC is still a little low. It is higher than it was last week, but not where it should be. This could be for any number of reasons. Most likely her medicine or she might have a touch of a viral thing going on. Her transplant coordinator said that when she talks with the Dr's to see what they want to do, she would let us know. For now we just need to keep her clean. Which means keep her away from all the sick people out there!

Also, this is kind of sad, but for the second time in a row she didn't cry when they stuck her to draw blood. She just sat there and watched them do it. Sad because she is 9 months old and getting stuck with a needle is old hat to her. However, I am grateful that she allows herself to let it be that easy. I wish I had that when I was little. Heck, I wish I had it now. I'm still not fond of them. She's happy though and I plan to keep her that way!