Evaluation Complete and Hannah is making "The List"....

First off,  Hannah has been doing great since we left the hospital about two weeks ago!   She has decided she wanted to start eating again during the day and is going above the goal they set for her intake. She has been so happy that it makes us wonder how hungry the poor girl probably was before but just couldn't take it in or keep it down.  Even though she is eating, they still want her to keep the NG tube for feedings at night because the more weight we can put on her the better!!

The evaluation went as to be expected and with no real big surprises, which we were happy to report.  We met with the whole transplant team which included 1) The Transplant surgeon - he was very impressive!  He has been at Children's for 18 years and has done just about every pediatric liver and kidney transplant they have ever done.  I couldn't ask for a more skilled surgeon.  On top of that he is also in the Navy.  2) the transplant coordinator - She has been awesome and so helpful with explaining everything to us.  She has done a great job making us feel as comfortable as we can at this difficult time of our life.  3) GI doc - we have been meeting with her for a while and she is great as well.  So knowledgable and you can tell she really cares for Hannah.  4) Social Worker - who is a very sweet lady.  Although we don't need much from her she is very welcoming.  5) Dietician - she has done a fabulous job working with Hannah's diet.  She really listens to what we say but at the same time explains what would be best for her right now.  She is very happy with how Hannah is currently eating.  6) Child life Specialist - she will keep Hannah happy and playing during her long hospital stay.  She will also include Jacob as well which will be great.  She was very sweet and what a fun job!  I am jealous:) 7) Psychologist - she did some testing on Hannah to see were she is at hitting her milestones.  She was very happy with the fact she was sitting well and thought she seemed strong.  We couldn't get to much into the gross motor with her because Hannah was so tired at that point she just wanted to sleep.

That is the breakdown of most of the transplant team that we will be dealing with on a regular basis.  They were all fabulous, and I can't think of one bad vibe I got off any of them. Which brings me to the point, I am SOOOOOO happy we live where we live!   We couldn't ask for a better, more knowledgeable, or caring team of people to take control of our daughters health.

Now to answer everyone's question..................(drumroll)..............Did Hannah gain any weight?????  Well, she gained around 2-3 ounces, which puts her right back to 13 pounds.  I know it doesn't sound like much, but the GI seemed very pleased because she believes it is true weight and not fluid.  The fact alone that she is gaining is a good thing.  The more she can gain up until time of transplant the stronger she will be, and in turn hopefully have less complications, and make her recovery time faster.  At this point, Hannah will be listed but her  PELD(pediatric end-stage liver disease) score is only a 5 which is considered a low priority.  We will return back in a month to see if her weight is heading in the right direction.  How she gains her weight will be the deciding factor if they decided to ask for additional points to make her more of a priority.  I think Hannah's biggest struggle with her liver is it's not functioning the way it needs to nutritionally.  You would think that she would gain weight if she continued to eat the way she has been, and we keep feeding her overnight.  Unfortunately, that may not be the case with her.  She could keep eating this well and still not gain weight, which I know sounds crazy!  ( I am sure part of us all wishes we had that problem ;)  )  So for now, we will continue to wait and take things day by day and hope at the end of April we see a decent weight gain.  I think as long as Hannah stays healthy otherwise, that appointment in the end of April will be the true test if this transplant is going to come sooner or later for Hannah. In the mean time, she will be on the list in the event she were to get real sick or just isn't gaining the weight.

I think I can speak for Greg too when I say there is a sense of relief that she is being listed.  The process is complete and up until this point I could never say I enjoyed this waiting game.  Although it's funny, now all I want to do is wait and enjoy every possible moment with this little girl.  Hannah's smile is what helps all of us get through this difficult time in our lives.  To watch her be so happy and strong this far, gives Greg and me the strength and courage to know that things will work out for all of us.

I hope everyone is enjoying this absolutely gorgeous weather!  Once again and always, I will end this blog with a big THANK YOU to everyone for your help, thoughts and prayers:)