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Showing posts from February, 2019

It's Rare Disease Day!

I apologize for the lack of posting.  But...no news is good news in the medically fragile world!  Abby has been doing SO well and we are thankful for the many improvements to her health.  She had a touch of pneumonia in the beginning of February and stayed at home!  This is huge because pneumonia can be a beast for diseased lungs.  She did her breathing treatments like a champ and hung in there just fine.  The last few weeks, her school has been pretty germy.  We kept her out for a week and a half to protect her while the flu made its rounds.  Everything is looking much better now though, so she happily went back on Tuesday.  While she is the one of my kids who I could easily home school, she is also the one of my two who simply loves being around people! Today is Rare Disease Day, and I wanted to share what I have been posting on Facebook with you all here. Cerebrocostomandibular Syndrome, Abby’s primary diagnosis, is extremely rare. There are only an estimated 10 children livin