Where do I begin?

I haven’t been on here for awhile. I guess I am just trying to come to terms with the information that was given to us after my daughter’s MRI. Everything seems to be making sense now that we mostly know what is going on with our beautiful little girl.

So there are two things that we know for sure through her MRI. She was born without the 6th Cranial Nerve in her right eye. What that means at this point is unclear. She is seen once per month by the VT School of the Blind and Visually impaired so hopefully we can come up with some plan once we figure out how this is affecting her. The big one tho is she also has Agenesis of the Corpus Callosum. Basically in my daughter’s case of this rare disorder, she started to develop the Corpus Callosum and for whatever reason it stopped developing. The cause is unknown at this point which is the only thing that really scares me at his point.

Scared you may ask? Well, yes… Scared. We were told that there is a few reasons for ACC. There could have been an infection when I was pregnant or there could be some genetic disorder. Ahhh… Genetic Disorder, we meet again. I hate the words Genetic Disorder. I loath them. We have had Microarray, Fragile X, and Metabolic testing in which all came back normal. Now the tough part. We requested for an autism panel which tests a bunch of other things. We were advised by the geneticist that this testing wasn’t necessary but this was before we knew A had ACC. The geneticist also mentioned that just because they find something, it doesn’t necessarily mean they know what to do with that information. I decided to do the testing anyways because if there is that chance that she has some sort of disorder that they know about, then hopefully we can figure out how to help our child.

The waiting game…. It’s been a month since that test went out. So now we wait. It’s always a waiting game. A painful, emotional, draining… Waiting Game.

If the tests come back normal, I will forever be grateful. I hope for her they do. You see we were so worried about her balance amongst other things. With this finding, it is all starting to make sense. With ACC, people affected with the disorder show signs of poor motor coordination, delays in motor milestones such as sitting and walking,cognitive disabilities, social difficulties, and language difficulties. My daughter is the POSTER CHILD for this. She was diagnosed with autism in December of 2016, but who knows at this point if that is the correct diagnosis. All I know is that this list of signs and symptoms explains my daughter to a T. In reading an article about ACC, I actually thought they were talking about my daughter. “There are many things which don’t come easily to babies and children with ACC such as learning to reach for toys, lifting their heads up while lying on their tummies, learning to roll over from back to tummy and tummy to back, learning to sit up, learning to move out of a sitting position, learning to eat table foods, learning to feed themselves, learning to crawl, learning to bear weight on their feet, learning to pull to a stand, learning to balance, learning to climb, learning to walk, learning to talk, learning to jump…learning period doesn’t come easily and is a struggle for many children who are missing their Corpus Callosum.”

What I can say about this whole experience is that it has changed me forever.

I have learned to appreciate everyday with my daughter. I’ve learned patience, acceptance, hurt like no other accompanied with love like no other, and I’ve learned you can’t take things for granted.

Nothing is ever what you thought it was going to be like.


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