By Sarah

A Place to Escape, a Place to Create....
Early in the Morning or when it is LATE.
Life isn't easy but worth it all the while....
Here are my Daily Reasons to SMILE.

Monday, January 5, 2015

Neurofibromatosis Type 1, nonverbal Autism and Everything Else

Okay, for those of you who have been waiting for me to talk about my little neurologically challenged family... Here it is:

Husband and I: My husband has Nuerofibromatosis Type 1, which was passed on to our youngest son because it is a genetic disorder that causes multiple, noncancerous tumors to grow on nerves anywhere in the body (brain and spinal cord included). It can also cause other issues such as, learning disabilities, bone abnormalities, heart and kidney problems, Optic Glioma, Scoliosis, headache and other pain, and High blood pressure. Unfortunately, there is no cure for this condition. There are however, ways to manage the condition.
I have Hemiplegia , which is a form of Cerebral palsy. It means paralysis of one side of the body. In my case, the right side of my body is affected. I had a stroke when I was born because the umbilical cord was short and wrapped twice around my neck . My heart was barley beating.
Complications associated with Hemiplegia: motor skill disturbance, changes in muscle tone,
Pain associated with brain injury and localized pain in the affected limbs, and learning disabilities like aphasia.
3 year old:  Nonverbal Autism, (he babbles a lot but does not speak more than a word or two at random). Anxiety and ADHD....need I say more?
17 month old: Nuerofibromatosis Type 1, Hemiplegia (left side of his body), Dysphagia (difficulty swallowing) which we remedy by thickening all of the liquids he drinks. He also has an occasional seizure, they are not frequent enough to put him on medication (which I am grateful for because of the nasty side effects associated with the medication).  On top of these conditions, he has chronic acid reflux and we are trying to figure out everything that he's allergic to.
I smile because I can't change our situation, but I can change my attitude!
If anyone would like further explanation of anything in this blog, please comment.

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