Not much has changed for Zoe, which is exactly what we want. Her counts remain solid, her WBC is holding at 4.2 as of today, though she did have GCSF on Friday. In terms of a trend she seems to be slowly ticking upward, holding on to more and more cells each week.
Her second chimera test blood draw also took place today, so I’ll be on edge until we hear back. They don’t always draw a second chimera test at 60 days, but Michelle and I had already determined to press the doctors to do it anyway — we want to be sure her last test wasn’t a fluke. Which of course it wasn’t, objectively, but at this stage we are still quite prone to worrying that something we can’t see is wrong. Luckily kids who are on the study all get tested again at 60 days anyway for a data point, so it was all part of the plan.
At home we’ve settled in quite nicely. We’re increasingly finding time for work and fun activities during the day, though it tends to be odd hours broken up by Zoe’s med schedule. Zoe has worked her way up to almost 10 ounces per day of breast milk, meaning we may be able to get off the IV nutrition soon. That would take a good hour and a half off of our daily routine, time we’d be grateful to have back.
Maya is doing well, we have a number of activities we’ve worked out to get her out of the apartment and playing with other kids. Keeping up her social life is really important at this age, and we’re lucky to have a number of friends here and back a home a short drive away willing to meet up for play dates.
We did find out that Maya is not going to be able to return to school this year, it’s just too dangerous for Zoe at this point should something hitch a ride home with Maya and get us sick. Her school is a really good one, but it’s just not possible to ensure she won’t bring something home and the doctors said no to her return this year.
Once Zoe is a little further along, likely next spring, Maya can start up again. Thankfully the girls are both very young, she won’t miss as much as she would even a year or two from now.
Thank you for continuing the updates…..I know your schedule is busy, and even though Zoe is doing great…..it’s still nice to hear how everything is going 🙂
I love the picture of Maya!!! She is a beautiful little girl……
Kids are just big ol’ balls of germs! I knew it!
I think it will be nice for Maya to be home and it will bond her and Zoe even more. The pictures, as always are beautiful. You are definately blessed with two very adorable little girls.
All good news. Thanks for the updates. Mara
Zoe ROCKS!!! We have 3 kids our son contiued to go to school he was in 1st grade but ourdaughter was in prek so we kept her home till after teh Christmas break. She got bored lol.
Thanks for the new update! Looks like Zoe is doing well!!
I know for you it is probably tougher knowing that Maya cannot go to school this year but hopefully the time will pass quickly and Maya and Zoe can spend some great time together since last year they were apart off and on. I know Maya is a great big sister and is a great help with Zoe.
Take care and love to you all,