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!

Smiles

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.

Strawberries

Orly is starting to outgrow her newborn size clothes and I’m DEVASTATED. These strawberry pajamas, for example, get me every time. I keep putting her in them, because I am worried they won’t fit next time, and I just want to cuddle my baby in her strawberry pajamas forever. All the girls have worn them, and I’m so sad that the era of strawberry pajamas is ending. I’ve already decided that I’m saving all my favorite outfits from the baby years and making a memory quilt to bring with me to my nursing home. Everyone else in the world wants time to hurry up and get back to non-COVID times, and I just want time to STOP (maybe the day after Penny is reliably house trained).

Baby blankets

Ever since Kaya was born, the girls have been receiving birthday gifts from Tommy’s parents’ friends Hobie and Mary. Every year on each of their birthdaays, without fail, a seemingly perfect birthday gift arrives. I believe Kaya is the only one that has actually met them (maybe Laney), and she doesn’t remember anything from that experience, but boy do they know the names “Hobie and Mary” – the magical gift senders. Additionally, Mary sends a handmade blanket every time we have a baby. And this picture is all the girls with their respective baby blankets – many thanks to them for all the gifts over all these years.