Tuesday, June 2, 2009

Here we go again...

After the symposium, I began feeling quite lucky. I prayed to God that this NF would stay "mild" and hey, I'm up for it totally going away too!!

Rachel is doing fine since the MRI and eye exam.....It seems the neurologist just wants to watch things. I was expecting that answer and have no problem with it.....I just don't understand, how something so common can have no cure or treatments.
Rachel has a fighting spirit and I am so thankful for that! She hs no problems doing the medically necessary things....(mostly cause she knows she has her Mama all to herself!)
My spunky little girl is so brave..I am so proud of her! I know we have the power inside of us to beat this....
Here we go again...........
My son has been having heaches...debilitating ones, that send him to his bed. He covers is pale body with a blanket and pulls his knees to his chest. This is one of the signs to look out for, when one has a disease like NF. I go into his room frequently to check on him, and to give him a dose of pain medication.

When day 2...3...4 and 5 go by and there isn't much change in him.....we head to the ER. I always find it interesting, when trying to explain NF to the Drs. It seems that ALL have heard of the disease, but MOST have no real clue about how incredibly random and devastating it can be. The Drs there wouldn't even address the NF. Stupid, clueless-idiots!
We spent 5 hours in the Emergency room that day, and walked away with the diagnoses of bacterial pnuemonia and migrains. The Dr. there told me to have his primary order and MRI of my sons brain. So here we go again....
It's one thing to have to undergo medical procedures yourself, but to watch your children be put through these kinds of things is very heart wrenching.
No matter what the results of the upcoming MRI, I am confident we will be okay. One thing about NF,
This "watch and wait" attitude some Drs have is pathetic.....Yeah---Let's wait until something bad happens before doing anything....? CRAP.!! Why do people go for cancer screens? ANd breast exams? It's not because they alread have something going on.....its because they want to catch something before it happens.
Anyway...I refuse to let this NF get to us....its here--yes I know its a reality....but it sure won't beat us...it lives on the bottom of my shoes....and I am determined to squash the hell out of it one day!

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