Counting our Blessings...

Sorry I am getting so behind in my posts!  To get everyone up to speed,  last Tuesday (6/12) we took Hannah in for labs and a weight check.  After a weekend of pumping her with as much food as possible we got disappointing news that she actually lost 2 ounces.  On the other hand her labs seemed to be improving with the bump in medicine.  Friday(6/15) we went for her clinic appointment, and the two issues switched.  She gained her 2 ounces back :), but her labs stayed the same.   The numbers didn't trend down like we would have wanted them too but didn't really increase either.  Her medicine level stayed at a 6, and they normally would like that number between 7-10.  They increased her main immunosuppressant again and are keeping her on the higher steroid dose until the next blood draw on Tuesday(6/19).  I am hoping by increasing her medicine once again it will do the trick.  If her liver enzymes increase again with the next set of labs, they did say they would like to do a liver biopsy.  This would determine if she is showing signs of rejection, if they need to adjust some of her other medications, and make sure they are not missing anything.  It seems to me that there is a lot of problem solving involved in finding the right drugs and the right dose to make Hannah's body allow her to accept the liver.

Hannah is still very happy and active.  She is really starting to take to her sippy cup and eat like a big girl!  We got the go ahead for during the day see what she drinks on her own and then make up the difference at night through her NG tube.  I don't foresee the NG tube going away to soon, but she is showing promise that hopefully it won't be to much longer!

This whole experience has been and continues to be such a ride of emotions.  I wish I could say she is all fixed and we don't have to worry anymore.  Unfortunately, in this world, it doesn't work that way.  You learn very quickly on how to live your life day by day, and get the most you can out of it.   There is no other way to live when your in this household.  Don't get me wrong, it can be very hard sometimes.  We can never really plan anything and/or I can't just run to the grocery store to pick up milk when I run out!  I miss those days.  I know our day will come when our "normal" collides with whatever people define as "normal" and our lives will be just like everyone else's.   It's just going to take some time!  I go on some of these support sites, and I feel lucky that Hannah is doing as well as she has been.  There are so many things that can go wrong, and I pray everyday that we won't have to encounter most of them.  I know I have told you all in a past posting about a little girl named Riley that had Biliary Atresia and was in a fight for her life after having three transplants.  Unfortunately, she lost that fight on Saturday:(  My heart breaks for that mother because she is living my worst nightmare.  I cried when I read the news on Saturday because all I could think about was that could have been us.  How did we get so lucky that our little girl fought through this and is here at home with us?  Once again, this whole experience taught me so much about myself and life.  It made me think of Hannah's donor family and how they are still and will always be grieving for the loss of their child.  How I wish that they could see my little girl smiling and laughing and hope that they could find comfort in the fact that they saved her life.  Please say an extra pray for Riley's family tonight.  I didn't even know them, but I know the fear of their nightmare that came true.  I like to think that God's plan was to have her as an angel by his side to watch over Hannah and all the other kids that have fought like her to live new life.

Greg, not only got to celebrate Father's Day Sunday, but his birthday as well.  We had a nice event free day at home.  We played, swam, and even had some family stop by.   Happy Birthday to the best husband, father, and friend I know.  Without his love and strength I am not sure how I would have gotten through this past year.  We find the strength and love in each other to help Hannah and our family get through this difficult time.  That is how I know Hannah is going to come through this with flying colors and live the life she deserves.