This morning Maggie hit her 6 month post-transplant anniversary (or “rebirthday”). She has had fevers the last couple of days, which I am assuming is an unidentified virus of some sort, but she celebrated her half rebirthday by feeling a bit better this morning. She is otherwise doing about the same – not thriving but making slow progress. The rest of us are feeling the wear of 6+ months of being a transplant/MPS family as well.
For example, just yesterday:
I did the usual 1-2 hour long morning ritual of getting myself ready, feeding/dressing Maggie, coaxing all her meds into her, then we went to Duke for labs, a clinic visit, a few IV antibiotics, then I handed her off to Tommy (who lovingly brought me some food) drove to UNC, met with the family coordinator for the MPS society, went to a work conference (for 2 hours! a long one), met with a UNC fellow re: research projects, did a little actual work, pumped, drove halfway home when I realized I didn’t pick up Maggie’s new prescription, drove back to UNC and went to the pharmacy, ran into Maggie’s geneticist in the lobby and chatted with him re: enzyme replacement post transplant, went home, fed 2 kids, coaxed Maggie into taking her PM meds, made myself some food, and finished reviewing a paper. And Tommy drove Laney to school, drove to Kaya’s school, made paper mache penguins with Kaya’s class, took Mila’s car to get the brakes checked, brought me food at Duke and took Maggie home, went to work for 5 hours, took Kaya to gymnastics class, put 2 kids to bed, had a work phone call from 8-9:30pm (with a Californian), listened to me complain about nonsensical hazard ratios, and made himself dinner before crashing.
Granted this was a bit of an atypical day, although not THAT far off from what feels like every day. This morning I looked over to my bedside table, where my childhood teddy bear lives, and he looks about like I feel! But (cue Bon Jovi) we’re halfway there (to that magical one year post-transplant mark – before we can start managing the normal MPS things).