Hi all! I live in Huntington Beach, Ca and have a 10 month old baby girl.
She is my first! Zoe has OI, which stands for Osteogenesis Imperfecta.
Which mean she has "brittle bones". She had 15 fractures while I was
pregnant with her that we could count on ultrasound and has had 16ish since
shes been born, all being in the arms, legs, and spine. She has
deformed bones since when they break we can not cast them (casts are too
heavy for infants) and there for can not line them up correctly and
have to let them heal naturally. As of right now I can handle paying her
medical bills for her infusions, port surgery, helmet, and xrays. What i'm having a hard time with is the
wheelchair we have to order for her (takes 6 months and insurance covers
50%). I know it seems soon to get a wheelchair but she will not be
walking and her Physical Therapist says that we should get one soon
because normal 10 month olds are crawling and 18 month olds are walking.
We dont want to hold her back from her independence and exploring, as
she is cognitively on track. I am trying to get ideas and locations for
either restaurants that will do a benefit dinner and give say, 10% or
whatever amount of the proceeds for her or and ideas for benefiting
medical bills. my email is [email protected] if you have anything
worth sending my way! Thank you guys
mom to baby Zoe, DX Osteogenesis Imperfecta type 3, over 50 fractures since birth, 4 surgeries, uses a wheelchair, severe sleep apnea, mild hydrocephalus, beautiful blue eyes.
Re: benefit dinner?