My Body Doesn't Make Sense!! Ugh!

I'm confused.  So very confused.  

     I've been having some problems breathing so I went to see the pumanologist (lung doctor).  She told me that my ventilation is 40% of a typical persons ventilation, which is not good.  She also ordered a sleep study because I've been exhausted all the time and she wanted to see if this is cause from the way I breathe when I sleep.  She seemed very confident that I would need BiPAP at night.  Which brings me to my point. 

     Last night I had my sleep study and this morning they kicked us out saying that my sats were good all night and there was no need for BiPAP or supplemental oxygen.  Thatsv good right?  Wrong.  I'm confused.  So very confused because how is it possible that my ventilation is 40% when I'm awake but everything is fine and dandy when I'm asleep.  It just doesn't make sense.  But, then again, when has my body ever made sense.  

My Story

It's a long story ... but if you really want to hear it, here it is.


I had a perfectly normal birth, I sat up at the right time, I crawled at the right time, I just didn't walk at the right time. I learned to walk when I was about three years old. Since it took me so long to learn how to walk my parents took me to get an MRI of my brain. I know now that the MRI showed that nothing was wrong, but my parents told everyone that it was cerebral palsy (CP) so that I could get services (physical therapy, occupational therapy, etc.).
From when I was three years old until first grade I could walk mostly on my own, and sometimes I needed someone's hand to hold on to. From first grade to third grade I used forearm crutches to help me walk. In third grade I got scared to use my crutches so I started using a walker. That's the year I had the most tests ever.
That year I had another brain MRI, two spinal MRIs, and a muscle biopsy. All came back negative for anything at all. After that, life went on and I just kept using my walker. And then, in sixth grade, I had this test where they stuck electrodes on my arms and legs to test my nerves. That test came back positive for Charcot Marie Tooth (CMT). But, usually you can see CMT in the blood and they couldn't see it in my blood, so, we're still unsure. That year I also had another spinal MRI that, once again, came back negative.
I've also had three surgeries. I had one surgery on my feet and legs, and the other was a spinal fusion. I have also had a revision to my spinal fusion. Surgeries scare me because I get weak and I don't know if it's the surgery or my unknown disability.
I am also legally blind. I have optic nerve atrophy with nystagmus and esotropia. Optic nerve atrophy is where the optic nerve is very pale instead of the typical, healthy pink it's supposed to be. Nystagmus is the involuntary shaking of the eyes and estropia is an eye muscular imbalance. At the age of two I also had had CAT scan of my brain to see the cause of my visual impairment. That also came back negative with no signs of any cause.
Through all this I trust that God has a plan for me. I don't know exactly what His plans are for me, but He does and I believe I'm going the right way. My story isn't over but I can do all things through Jesus who gives me strength!

Childhood

What should childhood be like? Should children be running, playing, and care free? This is what childhood is most often thought to be like, but the fact of the matter is that children are no longer care free.
Every child seems to have issues and every child seems to be forced to grow up too fast. There are so many things we have to deal with these days like: family problems, friend problems, cancer, disabilities, autism, school problems, epilepsy and many other thing like this force us to grow up too fast.
We get exposed to things we shouldn't see at a young age. We get exposed to things we shouldn't feel. Exposed to things we shouldn't hear. Too much exposure!
I want to change the world for kids. Because a child's world should be running, laughing, playing, and care fare free. So help me change their world!!

You're Never Too Old To Love A Stuffed Animal

My Special Sign

A little girl
Checking in for surgery
How scared do you think she'll be
She gets her wrist band
And they ask if her doggy would like one too
Of course, the answer is yes
And they're led to a place where the waiting is less
All the tests are done
And her and her doggy are waiting to be taken away
The last thing she sees
Before falling asleep
Is a stuffed doggy
White with red and pink hearts on him
This little girl is me
So you see
This doggy is mine
And is sign
Of what I've been through

By: Valerie Crisci


P.S. I do not want you to feel sorry for me or think I am complaining. All I want to do through this blog is try to share my story. I am very aware that lots of people have it worse than I do and I pray for those people all the time.
On a different note, please tell me how you think my poem sounds. Thank you all for reading my blog posts and letting me tell my story. :)

The Shoe Doesn't Fit

Do any of my followers where AFO's (leg braces)? If you do then you know how hard it is to find a new pair of shoes. You want something stylish that also fits your braces. Well, I've been searching for this new pair of shoes for almost 2 months.
I went everywhere. I fell in love with a whole lot of different shoes. There was only one problem: none of the shoes I liked (or any shoe for that matter) fit over my braces. I finally got to a point where I just tried on shoes without my braces on. Nothing even worked then because the shoes wouldn't go on my "dead" feet.
It was an adventure but today was the day when I finally found two new pairs of shoes. One pair to wear with my braces on and one pair to wear without my braces.
So, I hope this prepares you for the long road ahead when trying to find a new pair of shoes. It's going to at least take you two months to find the perfect pair. The pair that fits over your braces and are stylish. By the way, I strongly advise that you do not take the pair of shoes that the person who makes your braces recommends! I tried those ones once and they're hideous!!!