No news is typically good news and that is the case here at the Schreiber home too. Overall Abby is doing good. We aren't in the hospital this Christmas. She can walk again. There is snow on the ground, presents under the tree, and coffee cake will soon be warmed in the oven. The kids do kids things again: Sledding, fishing, tickling and arguing. Tiffany and I can do parent things: Work, homeschool the girls, go on dates, bike rides, and of course break up kid arguments:) We have good days and bad days. I guess life is getting to be normal again and that is a beautiful thing.
What Our Normal Looks Like:
Last year didn't start out the way we had hoped. As you know Jan-April was pretty intense. Abby was in the hospital for a long stint, couldn't walk, couldn't straighten her arms, and after lots of tests they finally put her on high-dose steroids and other meds to knock out the inflammation and autoimmune attack on her muscles. Since then she's progressed steadily with the help of physical therapy which is now down to only one time per week instead of three.
After 9+ months on steroids, they are starting to ween her off them now. This is a long tapering process that involves stepping down methyl-prednisone 4mg every 2 weeks. At the same time they are ramping up a different cortisol pill until her body starts producing her own again (but that takes a while when you've been on steroids for so long). By mid January she'll be completely off steroids and she is looking forward to her normal non-puffy face coming back too.
The pills have gone from lots to now fitting in 1 bowl!
In the midst of this all, Tiffany has been teaching the girls at home again this year. The girls also take a private math class a couple days a week and then go to the home school enrichment program that I run on Fridays where they do art, music, some science labs, ceramics and more. Abby started cello again this fall, Anna continues with piano and Lily is singing in a choir as well as learning guitar.
I'm working full time as a consultant helping schools and corporations bring hands-on learning to kids through teacher trainings, curriculum development, and presentations. I'm also directing the home school enrichment program that the girls come to on Fridays with me (Abby gets to go this year too). I had been traveling about once or twice a month but that has slowed down this winter and I'm happy to have more time at home while it lasts.
So for the moment, I guess we are back to normal -whatever that really is.
At the same time we are still a bit timid about this new normal. Never sure how long it will last but that is true of us all right? There will be unexpected joy and pain in all of our coming years. Our "normals" are all in constant flux -that's called living.
So, thanks for reading. Thanks for sharing life with us. Thanks for all of your support over these last couple of years. I'll try to update more often but if I don't, know that we are probably just having a normal life, walking out each day as it comes and looking for the beauty -each step of the way.
Merry Christmas! - The Schreiber Fam
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