Virtual Art

Virtual art class for kindergartners is remarkably effective – and you can even wear last year’s Halloween costume for extra fun! Here is Laney showing off her new talent of smiley face drawing, learned in her very first elementary school art class.

Sister selfie

Going from 3 to 4 kids, we skyrocketed from 3 different possible pairings, to now 6 possible pairings, which adds a nice sense of variety. It also allows two pairs, instead of one pair and one odd man out. I would give the “sweetest” award to this particular pair at the moment.

First day of “school”

Chapel Hill schools is teaching remotely through at least the rest of 2020, so the first day of school was a little different this year. There was a bit of mild excitement, but it’s really hard to sell kindergarten to a 5 year old when it just consists of an hour on an ipad. But they did really like setting up their learning stations. So here are Kaya and Laney starting 3rd grade and Kindergarten!

New house progress

One of the BEST things about going on vacation for a few weeks was coming home and seeing PROGRESS on our new house! Estimated move in will be in late October/November – and it finally feels like it might actually happen! Tommy is putting in the ceiling (don’t ask me why he is doing it – something about wanting it done a certain way) this week and the girls just picked paint colors for their rooms today. Fun!


Orly has started smiling, but they are few and far between, and I can’t catch one on camera. This is the best I can get. Most of the time I think she is about to smile, and then she either starts wailing (i have a lot of pictures of that) or poops.

Post-transplant studies

We deferred Maggie’s 2 year post-transplant studies until August since the end of June was incredibly busy, and I didn’t want to deliver Orly early and have to reschedule. Also, the COVID policies were still evolving and I didn’t want to miss several days of work right before I take an extended leave for the baby.

So this week we spent Monday-Wednesday at Duke for a sedated MRI, skeletal survey, echo, chest xray, pulmonary testing, labs, and a visit with the transplant clinic. She also has ortho, ENT, developmental peds, carpal tunnel testing, and ophthalmology coming up, but we spread those out a little. She did great with all the testing, overall, except they gave her some Versed before the IV placement for her MRI and she got MAD, which I think was perhaps paradoxical stimulation from the meds because she doesn’t usually get mad like that. Anyway, we are still waiting on her transplant studies (chimerism, immune function and enzyme levels), but her other stuff overall looks fine. Her back kyphosis (hunchback-ness) is a bit worse, which is a bit unfortunate although nothing to do about it yet, and she is developing trigger fingers and may have some chronic GVHD of her scalp, but those are all manageable updates (and none are surprises to me). All things considered, she is doing GREAT from a transplant perspective and as expected from an MPS perspective. We could really use a cure for that pesky MPS.