That is a mouthful!
We had clinic on Friday and stayed over so that we could attend the picnic on Saturday. I am so glad we did that. We met so many people who have been exactly where we are. They all were very friendly and more than willing to answer questions and give advice and encouragement. It was also very encouraging to see all they kids running around that have had transplants. They are just regular kids. There are hiccups every once in a while still, but for the most part, they are all healthy and growing and just being regular kids. I think we needed to see that.
They had lunch and face painting and balloon animals and scrapbook pages and games. We took the whole family with us so that the kids could participate. I think they will eventually become friends with the kids. It was good for them to see that these kids can be healthy and normal as well after a transplant.
They spotlighted the oldest transplanted child who is now 15 and also the most recently transplanted little girl, which was done 2 months ago, and also the most recently listed, which was Alivia and another little girl. Alivia is the youngest at this point.
It was so good to connect with all of these wonderful people. They are only going to add to our already awesome support system. I can't wait to get to know them better and form friendships with them. It is gonna be part of our life from now on.
Sunday, August 14, 2011
PCMC checkups
Since the last post, we've been back down for liver clinic checkups twice. Both times went well. Her bilirubin level is headed up with each set of labs and her albumin and INR levels are getting worse as well, so her PELD has now gone from 23 to 28 and now as of Friday 31. It was officially recertified at 31 so they should be receiving many more offers with such a high score.
She hasn't gained much weight, but they believe it is just due to additional fluid loss from her ascites. We are still on a high calorie diet and they told us to feed her however much she will eat. There was a ceiling on her intake for a couple of weeks, but they removed that since she seems to be doing and eating so well. She is filling out again so she is putting some weight on. Now that the fluid is gone, maybe it will translate into real weight gain before the next clinic checkup in 2 weeks.
BUT she is holding her own and doing as well as can be expected for now.
Milestones:
In the last couple of weeks, she got 2 teeth while at the hospital this last stay.
She has started eating some solids and is LOVING them. She gets so excited when she sees that spoon coming towards her.
She started rolling completely over. She's even figured out that she can get around a bit by rolling.
She hasn't gained much weight, but they believe it is just due to additional fluid loss from her ascites. We are still on a high calorie diet and they told us to feed her however much she will eat. There was a ceiling on her intake for a couple of weeks, but they removed that since she seems to be doing and eating so well. She is filling out again so she is putting some weight on. Now that the fluid is gone, maybe it will translate into real weight gain before the next clinic checkup in 2 weeks.
BUT she is holding her own and doing as well as can be expected for now.
Milestones:
In the last couple of weeks, she got 2 teeth while at the hospital this last stay.
She has started eating some solids and is LOVING them. She gets so excited when she sees that spoon coming towards her.
She started rolling completely over. She's even figured out that she can get around a bit by rolling.
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