Friday, June 20, 2008

CVI...

I had to blog this: JONAS JUST CRAWLED ABOUT 3-4 FEET ON THE COUCH!!!!!!!!!!!! I was
not even coaxing him. I was getting his bottle, and Ryan was beside him working on his
laptop, and I turned around, and it took me a couple of seconds to process what I was
seeing, and then I said, "Oh my gosh, Ryan look, Jonas is crawling!!!!!!" that made my
night!!!

About Jonas's MRI: We have preliminary results from the radiologist, and the
opthalmologist looked over it too. We will see Micah's Neurosurgeon on Wednesday to get
an in depth report, and for him to evaluate him. So the preliminary general diagnosis is
CVI:

Cortical visual impairment (CVI) is a form of visual impairment that is caused by a brain
problem rather than an eye problem (the latter is sometimes termed "ocular visual
impairment" when discussed in contrast to cortical visual impairment). Some people have
both CVI and a form of ocular visual impairment as well.
CVI is sometimes known as Delayed Visual Maturation because the person's vision can
sometimes seem (to an outside observer) to be improving over time. This can be due to
the person's learning how to make better use of the unusual types of information that
their malfunctioning visual system presents to them, and to take into account the context
and other clues in a piece of continuous Sherlock Holmes-style detective work. CVI is also
sometimes known as Cortical Blindness, although most people with CVI are not totally
blind. The term Neurological Visual Impairment (NVI) covers both CVI and total cortical
blindness, but sometimes these terms are confused. (That definition is from Wikipedia.)

What does this mean for Jonas...

Sometime either pre or post natal, he had a stroke. Or, sometime after birth and coming
to GLA he got an infection in his brain that damaged his right occipital lobe: The back part
of the brain that controls vision. The connections that are in the brain that transmit
messages from one side to the other, have been damaged, and that part of his brain has
atropheed. What damage is done, is done. It will not progress, but that part of the brain
will not get better either. Kids are very resilient, so his prognosis developmentally can still
be very promising!!!!!!! I will learn more about that on Wednesday.

I am glad that we have some baseline now to start with. We will be able to research and
learn all we can about CVI, and how it can effect children, and learn how to best help him
reach his full potential!!!!!!!!!!! The one thing I wonder, and will always wonder, is when
did the stroke or infection happen??? Was he normal developing, and then got sick???
Was he so scared and frustrated when he got to GLA because the the damage had not
occurred too long before coming, and he was still getting used to a body and mind that
did not function the same anymore??? We will never know, but those are things that I
have thought about today. Maybe the Neurosurgeon will be able to tell us, and shed more
light on the situation???

He is doing great, and progressing everyday!!! When I went into get him after his nap
today, he was saying, "da, da, da, da, da,". I am hearing new sounds out of him all of the
time. When I hold him now, he plays with my hair, and if I have short sleeves on, he will
put his left hand in my sleeve and play with my arm and shoulder. It is so sweet.

Tonight, when the kids were getting ready for bed, Micah was near him and Jonas initiated
play with Micah. That was so cool to watch!!!!!!!!!!!!!!!!!!! Micah LOVED IT TOO!!!!!!!

I see new and encouraging things everyday... God is soooooooooo good!!!!!!!!!!!!

2 comments:

4 lads for me said...

Wow girlie! that is a lot to learn because it is all new to me! I think Jonas has found the perfect place where he will reach his full potential! You amaze me girl!!! The love that you guys have showered him with is better then any diagnosis or medicine! Keep it up! He is really going to blossom now!!!! He is darling! Wish I could just squeeze him!!!

BSC said...

I don't even know what to say. I'm just amazed at how intricate our bodies are. I'm praising God that He is in control and that God is directing the doctor's steps and your steps.

What a blessing that you are seeing visible progress with Jonas. Have a great day.

Beth