We went to liver clinic last week and a parent support meeting. Ian is doing better now (PELD is an 8 but he is still listedas a 14) although his abodmen is getting bigger--to be expected. He loved the trees and other Christmas things at the center but of course the butterflies were still the best to him. We didn't get to see Dr. Romero this time so Ian was sad. We did find out that we are near the record for longest pediatric wait time at CHOA. Not really a record we were aiming for......we've been waiting for 3 years now which is truly amazing as most kids wait just 6 months. Ian is just really stable and we know it is Heavenly Father helping him and us. We've started to talk to Ian about his transplant and what to expect. We got 2 books from the center to help us with that.....and Ian is looking forward to his airplane ride or daddy driving superfast.
1 comment:
oh looking back at this post is just crazy...good luck!
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