Ernie was born July 27, 2009, everything seemed perfect at first he ate well and slept very well. At his six week baby check we had the shock of finding out he had hydrocephalus. The next morning we drove 10 hours to the Alberta childrens hospital where I would spend the next three weeks watching my little baby get poked, prodded and scanned. He ended up have a VP shunt placed and we were sent home two days later.
"Everything should return to normal and he should catch up" we were told, he started missing milestone after milestone. At three and a half he was diagnosed with autism, bilateral polymicrogyria, random seizures and now his hips, it's a new diagnosis so I haven't memorized what it's called yet, but his hips pop out of the joint and he risks grinding all the connective tissue away.
We have had a huge financial burden placed on us with these hospital visits. We are on the At- home program but the "help" the provide is minimal and only reimburses a small part of each trip. We usually book our trips before it snows but in the slow season so we can get a break on our hotel. This time everything is time sensitive we need these appointments as soon as possible for the best outcome.
Ernie is a very happy little boy who loves music, swimming, trucks and trains, and he is very social on our trips out in the community.
Ernie will be having double hip reconstruction coming up in the next few months, we have to go to Vancouver for multiple appointments. Our next trip is august 5-9, we have had several large unexpected expenses that have wiped out our account to for the summer. Under normal circumstances we would have just tightened our belts but Ernie needs this surgery to better his chances of walking or at least lessening his pain.
I have recently started an amazing job that understands that I need to take time off to care for my family. There are no sick days or benefits so when I take time off I don't make money.
The money we are asking for will be used for the trip to Vancouver and anything extra will go into an account for Ernie. During the recovery time if I need to take time off work it will serve as a cushion, as well our house will need to be adapted so we can get Ernie's wheelchair safely from our car to the house so he has an appropriate and safe location to recover from his surgery.
There are so many little things you just don't think about until you are faced with them. It seems like everytime I save for something another more important bill comes up. I have gladly spent the money I was saving for a road bike so we don't lose our house and now even our extras are gone.
Its very humbling to have have to ask for help but at this point I have to, I also hate writing so I apologize if it doesn't take sense at times.
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