Introducing us!

It's crazy to think that all 4 of my kids have something. It goes: Rare, Very rare, Ultra rare, and so rare less than 20 known people have it............ How is this my life??? How do I keep moving? I am literally developing an issue with my neck (losing its curvature) due to the amount of stress I am under! But back to my kids -

Sierra - ASD, ADHD, ODD, DMDD, PMDD, FND, POTS, MCAS, hEDS, CCI, Gastroparesis/hypomotility, Epilepsy, Fibromyalgia, CFS ... I am probably forgetting something

Andy - Burnside-Butler Syndrome (further testing soon)

DJ - ASD, ARFID, Immediate and delayed echolalia, Solitary Kidney w/ cyst, and awaiting genetic testing to see if he also has BBS

Gracie - Hypotonia, Global Developmental Delay, Burnside-Butler Syndrome, HNRNPC microdeletion

There are 3 therapists that come to my house for Gracie, DJ goes to speech twice a week, Sierra goes to PT twice a week and has an aide to help her with things she struggles with. I was at the Children's hospital on Wednesday and Friday last week, and I will be there again on Thursday. I share bits and pieces of our craziness here and there, but I have never truly shared the whole of it. Until now. I spend so much time researching medical terms and diagnoses and possible treatments........ is it any wonder I needed an outlet? I needed something tangible to show. Proof in the darkness, as it were.

My husband is doing his best trying to find a job that will allow us to keep the house and pay our bills, because I can't go to work with all of the medical stuff the kids have going on. My mom tries to help as much as her health will let her when she isn't working. But when it comes to the kids' appointments and everything else ---- I'M IT. I love all my kids and would do anything for them. Mama is just so tired, but I am trying my best.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." Proverbs 3:5-6

#pots, #mcas,#pmdd, #ehlersdanlos, #asdmom #ASD, #arfid #burnsidebutlersyndrome, #solitarykidney, #hnrnpc #HNRNPAwareness24 #hnrnpfamilyfoundation