Today's appointments went well. Shelby enjoyed her time talking to her Dr. Jill then we decided to fill our 3-hour gap between appointments by going to the Peggy Notebaert Nature Museum. It was a lot of fun there and totally beat hanging out at the hospital. Avery was totally psyched to hang out in the butterfly haven; Shelby not so much. Shelby not at all, in fact. When the really huge butterfly landed on Avery's head and then proceeded to hang out on Shelby's backpack, she decided she'd had enough. Hopefully my Mom got some great shots of the amazing butterflies and Avery enjoying herself.
My time talking with Dr. Superina was fine; very reassuring to me....other than him running over an hour late! Shelby's "rash" decided it would flare up in clinic so the NP and Dr. Superina were able to see it. He would like her to see her Dermatologist (of course, in Chicago) next week (:-O) He said he would get in touch with the Dermatologist about her seeing Shelby and we weren't on the road more than 30 minutes and I got a phone call from her office asking all sorts of questions and wanting me to e-mail the pics I've taken of her skin. No word yet on the cultures taken last evening.
Dr. Superina said Shelby's MRI looked fine and that all was a go for the 13th. He said he will not be able to use her Kasai incision because she has grown so much since then and it is now up high by her ribs. He will have to create a new incision, but hopes that that one can be used again when she has her transplant. It appears that the incision will be 4-5 inches long. She will not be able to do any activity, like gym, for 6 weeks so she has quite a recovery time ahead of her. He said that her spleen should go down in size as soon as during the first week post-op! The platelets and blood cells, however, will take longer to show improvement.
Now, its just time for this to happen. Only 13 days to go...I totally trust this man with my little girl. Just to remind him of what an amazing kid Shelby is and what a precious gift of mine I am placing in his hands, I showed him this (we each made a feather for a "Thankful Turkey" on Thanksgiving) ~
~ in case you can't read her writing it says: Shelby - I'm thankful for Dr. Superina, my surgery, sisters, Disney channel, Santa! and the best Christmas presant which is Kayla coming..and everything!
Right now I have Shelby beside me saying that her tummy hurts so bad she can't go to sleep. There is nothing I can do for her; nothing. We've tried so many things and she's maxed out on the meds she can take for it. I pray that somehow this surgery helps her tummy pain, too. We would appreciate your continued prayers. Thanks.