MPS Run

Come join Team Magnolia for the Raleigh Run for Rare MPS 5K on March 30, 2019. We would love the community to join us! What else do you have to do then come to Raleigh at 8am on a Saturday?

https://support.mpssocietygive.org/event/raleigh-run-for-rare-mps-5k-2019/e218711

 

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Rain rain go away

It feels like it has been raining incessantly here for the last several weeks, which is really hard on Maggie because it means she just has to stay inside the house all the time. She is now off immunosuppression, but it is still flu season and her immune system is not normal, so she is not yet able to fully join society. Laney and Maggie and I did sneak out to Duke Gardens a few weeks ago during better weather, but we are oh-so-ready for a sunnier springtime.

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Make it or break it

January felt like a bit of a slog – nothing really going on, but somehow the days have just disappeared without many accomplishments. Maggie had a brief hospital stay for fevers/adenovirus but seems better now, although still not gaining weight and less mobile than I would like. Kaya lost one of her front teeth and is rocking 1st grade. And Laney has decided she prefers crazy dance parties at school to ballet class and has announced she will go back to ballet when she is 6. I am excited but nervous for February – feels like a make it or break it month: Will Maggie successfully get off cyclosporine without GVHD? Will she finally start gaining some weight? Will I actually get my grant submitted? Will I manage to sound somewhat intelligent for my talk on Feb 16? Can I convince Laney to go back to ballet (okay this one doesn’t matter)? Will Kaya lose the other front tooth (okay that one doesn’t matter either)? Wish us luck…

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Lanterns

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).

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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.

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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!

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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.

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