Feeding Tube Awareness 2018

We are definitely battling with the feeding tube on a daily basis.  But, what’s new?  I was sitting here pondering on how long it has been that I learned how to work with feeding tubes and I have to say that I am a genius! haha.  It has been 18 years. What is up with that? I should have a medical degree of some sort by now.  Don’t you agree?

The Sweetest Words Ever Spoken

 

I never dreamed I would hear him say it.  As a mom of a child with special needs, I can say that this was so rewarding for me and for him.

Cortical Vision Impairment (CVI)

What is Cortical Vision Impairment (CVI)?

It is what my child has been diagnosed with.

The medical term is

  • a form of vision impairment that is caused by a brain problem rather than an eye problem.  CVI is caused by any process that damages the visual parts of the brain.

So, this means basically that Brent is blind.  Blind only in his right eye so I am thankful that he still can see good in his left eye.  With the diagnosis, comes Vision Therapy!

Budd-Chiari Syndrome

BuddChiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.

My Kind Of RARE

 Loving2016-02-09 17.05.06 someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love 2 special RARE people in this life.  This RARE condition is a Chromosome and Neurological Disorder called L1 Syndrome. The ins and outs of daily struggles makes it worthwhile when the smallest little grin comes across their face or hearing the laughter and seeing the silly faces they make when they think no one is watching or listening or even signing a new sign after teaching it to them over and over and over again and you feel like your not winning this battle and all of a sudden…. he signs….

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