Saturday, June 28, 2008

What is "normal"???

I found this sight today, and it gives a very good description of CVI. We did not learn anything "new" and the neurologist appointment on Wednesday. Honestly, if he was not Micah's Neurosurgeon, we would probably not go back to him. We have always loved this doctor, and he is a colleauge of my dads'. Maybe he was having a bad day, but he just was not positive. He has always been very positive with Micah, even from the beginning, and not knowing if he would ever walk, or what his developmental outcome would be. Micah was born with Spinabifida/hydrocephalus, and he walks, runs, jumps, and does excellent in school!!!!!!! He is like any other boy.

He told me on Wednesday, that Jonas would never be "normal". Okay, honestly, I wanted to hit him. All of these "momma bear" emotions came out in me, but I politely kept them inside. He said that he will always have CP (Cerebral Palsy): Yes I know this; that does not just go away. But I know lots of adults with CP that function independently! He also said that there was nothing to be done for his vision. I know this too, and also, you can be an independent person with no vision. Did he forget that Hannah is totally blind??? I am so thrilled that Jonas has some limited vision!!!!!!!!!

So doctor, do you realize that you just insulted 3 of my children, saying that they are "not normal"? Really, what is "normal"? God made all of my children just the way they are supposed to be!!!!!!!!!!! So maybe they are not "normal" in society's eyes, but they are "PERFECT" in my eyes, and in God's!!!!!!!!!!!!!!!!!!

Psalms 139: 13-16

13 For you created my inmost being;
you knit me together in my mother's womb.

14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

I will let the Bible speak for itself...

The doctor did say that children's brains are very plastic, and even though parts are damaged and will not get better; the brain in a child has an amazing way of re-routing to different connectors and functioning through a different way. Looking at what Jonas has done and learned in just 6 weeks of having him, I am very optimistic!!!!!!!!!!!!! Maybe I am in denial somewhat, but I am not going to put limitations on him, until he proves to me otherwise!!!!!!!!!!

Yesterday, we went to see Dr. Landrigan for a 6 week checkup, and he was thrilled with his accomplishments!!!!!!!!!!! The boy is now 28 lbs. 12 0z, and is 35 inches long. So, in 6 weeks, he has gained almost 2 lbs, and has grown 1 1/2 ". WOW!!! Jonas even stood holding onto a chair with no assistance, for a few seconds!!!!!! He is eating much better, and learning how to chew: Right now he is eating bites of PB & J, and cantelope. He even holds a sippy cup by himself, and takes drinks. He understands everything that I say to him in Creole. He is making new sounds all of the time, and he is moving around our house so comfortably!!!!!!!! I was reading a braille book to him yesterday and he was running his fingers over the braille. That about made me cry!

Here is a great description of CVI:

(American Association for Pediatric Ophthalmology and Strabismus)

What is cortical visual impairment?
Cortical visual impairment (CVI) is bilateral decreased visual response due to an abnormality affecting the part of the brain responsible for sight. It is one of the most frequent causes of visual impairment in children from developed countries.

My child had been diagnosed with cortical blindness in the past. Is this the same thing?
Cortical blindness is an older term for CVI. The term “blindness” can be misleading. Children with CVI usually have some level of vision which can improve over time.

How does normal vision work?
The eyes take a picture of an object. That message is sent to the brain by way of the optic nerves. The brain recognizes the image and integrates it with other sensory messages (auditory or hearing, proprioceptive or sensing where the object is in relation to the body, etc). The brain then responds to the sensory input by sending a motor response to the appropriate part of the body.

How does vision work in CVI?
The eye structure in CVI is usually normal. The eye takes a normal picture of the object and sends the message to the brain. The message is not properly processed or integrated because of the abnormal brain function. Many children with CVI have difficulty visually “latching on” to an object and also filtering out peripheral visual stimuli to isolate the object.

What causes CVI?
CVI can be caused by any process that damages the brain. Examples include: stroke, decreased oxygenation, brain malformation or infection, hydrocephalus (increased pressure in the brain), seizure, metabolic disease, head trauma and other neurologic disorders.

What visual characteristics are associated with CVI?
Variable level of vision loss, often demonstrating fluctuations over time
Poor attention to visual stimuli, particularly complex visual stimuli
Delay in response to visual stimuli
Improved visual function in familiar settings with familiar objects
Preference for looking at lights
Preference for viewing objects at close range and odd angles
Better vision when viewing moving objects than stationary objects
Does vision improve in CVI?
It is difficult initially to predict future visual function. Vision improvement may be seen in some children.

Can CVI be treated?
Treatment of any underlying neurologic disease is essential and should be organized by the primary care physician. It is also important to start early intervention to help stimulate visual development. The appropriate state or local agency should be contacted for available services.

What type of stimulation is helpful for children with CVI?
Large, high contrast, lighted, reflective and moving objects; e.g. mobiles
Touch or sound to attract child’s attention
Visual materials presented in a simple uncluttered manner with increasing complexity as tolerated
Presentation of visual material from different directions/angles
Variable level of light in environment (some children do better with a lighted toy in dim room initially)
Extra time for responses to visual stimuli
Avoidance of over stimulation
Avoidance of visual tasks when child is hungry, tired, frustrated, etc.

**I had to laugh about avoiding "over stimulation". Do you think an orphanage with almost 100 babies is over stimulating??? lol...

Here are some pics of him eating lunch today. He is such a HAPPY BOY!!!!!!

I will post videos of Hannah singing some songs from zoo camp that she learned this past week, and a video of Jonas. Hopefully I will do that tonight!


Jessica said...

SO cute :) Can't wait to see him tomorrow!!!

Phylrey said...

You go girl!!! Don't let that doctor or anyone else put limitations on our boy!!!!!

Love, Aunt Phyl

dreamingBIGdreams said...

He is beautiful! Thanks for the encouragement on my blog today!