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?
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.
What is (CVI) Cortical Vision Impairment? It is what my child has been diagnosed with.
The medical term from childrenshospital.org is:
- Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. Fixation and following, even to intense stimulation, may be poor and the child does not respond normally to people’s faces. Visual regard and reaching (in the child with motor capabilities) toward objects is absent.
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 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.
Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love two special RARE people in this life. This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make when they think no one is watching, listening, or even signing a new sign after teaching it to them over and over and over again. Sometimes it can feel like your not winning this battle and then all of a sudden…. he signs….
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SURVIVING TWO THRIVING...with L1cam Syndrome 