Yesterday was clinic day for Maggie and Lauren. They've gone from seeing doctors around the clock, to just seeing them twice a week, and I don't think they're complaining a bit :)

Here's the latest update from Mom, Lauren!

Hi everyone. All continues to go well here. Maggie had clinic yesterday and received her IVIG as planned. I recently found out that one IVIG infusion is made from the plasma of over 1,000 blood donors. Pretty amazing huh?? Blood donors we love you!

Her labs yesterday were good, her white count and platelets were both up and her hemoglobin was down just a little bit to 8.8. Everything else looked good. The chimerism still isn't back but we will hopefully hear by the end of the week. Her cyclosporine level was actually way too low yesterday go figure! We can't seem to get to that happy medium and get her levels where we need them. So the dose was adjusted again and we will see what it is on Thursday.

The doctor is reducing the amount of tpn she gets at night just a little bit. Maggie still isn't drinking much more than a few ounces of fluid a day so he is hoping that by reducing the fluid she gets at night maybe her body will start to feel thirsty. It's a hard balance because we also can't let her get dehydrated.

Non medically speaking she is doing good. I am homeschooling her this year for kindergarten because she wouldn't be able to return to school until the year was more than half over..and then I don't really want her exposed to illness. So we started school last week and she's doing great. She is so smart!! She loves to learn.

We had a great weekend with Andy and the boys here and spent a lot of time outside at the Boston common and public gardens. We love our weekends when our whole family can be together.

We are both a little homesick and anxious to go home. I'm hoping that we can get home sooner rather than later but understand it will happen when it's supposed to.

Thanks to everyone for checking in and our love to everyone.

 

Here's a picture of Maggie working on her lessons AFTER a full day at the clinic

Don't forget this Saturday night, there's a fundraising comedy show at Jeff's Catering, with all proceeds going to Maggie's medical expenses!