Ian is home now as of late Wednesday. He was so excited to see his train table and even though it was close to midnight we indulged him and let him play with it for a few before heading to bed.
We celebrated Christmas today (Feb 1st) and Ian got Cranky Crane from Santa. This was what Ian had been asking for for months leading up to Christmas. He also got bulstrode, salty, rescue train, murdoch, james, fearless freddie, quarry flatbed cars, and a new carrying case. Santa must have known that Ian would need it given all the new engines he has received.
Ian had labs done on Thursday here at MUSC for the first time. He was a champ through the ordeal but it was an ordeal needless to say. He is ready for the PICC line to be done I think and that wouldn't bother us a bit. We'll ask the transplant team about it on Wednesday. We recently found out that Ian couldn't play soccer as it is considered a contact sport so we are wondering about t-ball or baseball....that is another question for the team.
I have been putting mederma on Ian's "special t". He is great to remind me about it if I forget. I am hopeful that the scar will fade a lot over time to be like his previous surgery scar. My mom gave him a swim shirt to use for the summer which serves two purposes--sun protection as we need to be extra cautious b/c of some of the meds he is on and two hiding the scar to avoid lots of questions about things. Livia has one too and I'm checking into one for Brett and for me as well so we can all match.
Ian continues to not like his diflucan. I've tried calling it fluconozol (the generic name) to fool him that it isn't the med but he is on to me. It worked for the zovirax calling it acylovir. The other meds he does well even the bactrim which at the beginning was the one he gagged on all the time.
We've started seeing insurance statements for Ian's surgery, hospital stay, medications, etc. I am so thankful that we fundraised and even more grateful to all those who made it possible to reach our goal. Bless each of you. We don't know how people pay for this without insurance and fundraising.
As labs are due tomorrow, I'm sure there will be an update early next week.
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