We went to the Chinese Lantern Festival in Cary the night after Christmas with Gammy, Mila, and all the girls. It was pretty good – beautiful light sculptures and a fun show. But it was also cold and crowded. I brought Maggie in a mask and strapped her to me, which is usually sufficient when we are outside to make me feel like she is protected. But it was too crowded for her, and I spent most of the time trying to find places to see the displays without anyone else around. And as Kaya put it, it would have been really great “on a hot summer night without so many people.” (It actually wasn’t that cold, but Kaya was tired and therefore cold).


Smiling through it all

Maggie has been finally feeling up to doing some physical therapy/walking, and I remain puzzled at exactly what concoction of infections she has recently had. But it at least includes re-re-activation of her CMV, C diff, and I think a few other viruses strewn in there. Plus there is strep and lice going around Laney’s school and Laney woke up with a “dry hurting” throat this morning, although remains 0/4 Centor criteria so I’m not taking her in to get swabbed for strep yet. But despite all this, Maggie’s 6 months studies show that she remains full donor (ie, all of her blood cells and immune system are from her donor, not her, and therefore make enzyme, although her enzyme levels are still pending).

All in all, Maggie had a lovely Christmas at home and LOVED her new toy Rody until she fell off and is now a little wary. This picture was taken 22 second pre-fall.



A Very Merry Christmas

We had a lovely Christmas Eve at Grandma Baba’s and a lovely Christmas day at home. Santa was very good to our family and both Kaya and Laney got exactly what they asked for (which was a bag of squishy toys for Kaya and skittles and smarties for Laney). They also had a huge haul from other family members (they have no cousins on either side of the family so they get lots of grandparent/aunt/uncle present love). For Christmas I got a delicious husband-cooked Christmas dinner and a nap in the afternoon when both Maggie and Laney simul-napped! Plus a bottle of champagne in the Yankee swap. There was so much commotion that it was very difficult to get a picture of all 3 girls, so this is the best I could do!


Winter Solstice

We had a winter solstice party last night complete with champagne, booger soup (or egg drop soup, as the adults call it), and political debates. What more could one want for a Friday night? Maggie is feeling much better, although still not eating much, and the other girls are excited to kick off a few weeks out of school (god, help us all). I am excited that the risk of infectious contamination with one of the thousands of bugs going around Laney’s school (including strep and lice) is lessened for a few weeks, though.


Bear sums up 6 months

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).


an o-K clinic visit

Look who we ran into on our weekly pilgrimage to Duke yesterday morning! Coach K was in the lobby participating in the 101.5 Radiothon to raise money for Duke Children’s Hospital and chatted with us for a bit. I had been listening to him broadcasting on the radio on the drive to Duke, and then Maggie simultaneously puked and pooped all over herself/the carseat as we pulled in the parking lot. So I was trying to clean her and the car, while keeping the doors closed because it was freezing outside, and trying to keep vomit and puke contained, all while rushing to try to catch coach K before he left. Luckily we made it! We are back next week to keep Maggie on her pentamidine schedule and for her 6-month (!) post-transplant studies, and then I am hopeful we are going to back off to every other week (or less?) visits.



Fall snow

Today was a rare fall snowstorm in North Carolina – we got 6-7 inches, although it was a very wet snow. For the last few years, we’ve gotten “big” snowfalls like this, and I may have to stop claiming that they are rare here. It was Mila’s first time in snow, and her first snowman came out pretty well. Maggie wasn’t so into it, but lasted long enough outside for everyone to feel like they had their fill of this winter wonderland. Now let’s see when schools reopen.


Nutcracker Previews

Kaya and Laney have been taking ballet for a few months now, and their dance school puts on the Nutcracker every year. That show is a bit long for our crew to sit through, so they also do a sneak preview at the Washington Duke Inn, complete with brownies, hot chocolate, and many many ballerinas. The girls were SO excited to meet all the “real dancers” and watch them dance. They even got all of the dancers’ autographs and got to dance with them. It was quite cute.