I 💜 Somebody Rare!!

I wanted to have a girlfriend make shirts for us to wear today but I knew “P” wouldn’t wear hers (we’re still not wearing a lot of stuff) so we’re going to have her do that for us next year. I just wanted to take this #RareDiseaseDay and share with you Posie’s rare condition(s).

While Posie suffers from some developmental delays and different health conditions (G.E.R.D., gastroparesis, abdominal migraines, etc), she also suffers from rare conditions. She suffers from intestinal psuedo obstruction, cyclical vomiting syndrome, hypotonia, and idiopathic hypertrophic pachymeningitis (we’re told there are only four known pediatric cases in the world of this one, one as far away as India. There’s been resolution with some symptoms with treatment in those but her case is “idiopathic” meaning there’s no known cause. We’ve exhausted all these tests to see if we could find an autoimmune disease or something to link it to. They found nothing. We see her neuro again in a couple weeks).

Regardless of what she’s been through, no matter how long her nights are with pain, nausea, vomiting – every day she gets up and faces the day and brings a smile! Do you know what I hear over and over about this little girl? “She’s the sweetest”, “She’s always smiling”, and “She just doesn’t look sick!” This girl gives and gives it all, she has the BEST sense of humor (I think she gets it from me, her dad says “no”), and she gives the best hugs you’ll ever get (she does get that from me). I couldn’t know when I was pregnant what our lives would look like when she got here, I couldn’t know the struggles we’d face or the fear and tears that would come but in a much more real sense . . . I may have never really known and appreciated what it was like to “do life in community”. Because my family, friends, and faith family are raising her, too.
I’m including links in the comments if you’d like to learn more!
#RareDisease #February28th2019 #ShowYourRare #Posie #CVS #PsuedoObstruction #CyclicalVomitingSyndrome #HypertrophicPachymeningitis #TheMoreYouKnow