Friday, May 17, 2013

Eliah & Family Update

Tuesday, May 20, 2008

Well, it's hard to believe that in a week it will be a year since our bundle of stress arrived. Things have been going pretty well. Eliah has 14 teeth! #15 and #16 are on their way in as we speak. He is also doing a lot better with sitting up. Although he cannot balance himself, he wants to be in an upright position most of the time. SO that is a big improvement. He is able to drink from a sippy cup, and he's working on eating finger foods. And we have reduced his formula intake in preparation for something else (mabye goats milk?), and it's saving us a little money. For a while, it was costing $500 a month to feed him.

Every week we take him to Physical Therapy, Occupational Therapy, and someone also comes out to the house to work with him. He has been "diagnosed" with Sensory Defensiveness, which means he shuts down from small amounts of stimulation (like making eye contact or changing his shirt). So we have been doing some sensory training with him. Basically, we rub him down several times a day with a scrub brush. He has been so much better since we started that. I am actually able to walk away from him for more than 30 seconds. And he actually enjoys bathtime now, instead of high pitched screaming the entire time. And since he still isn't sitting independently, we have ordered an adaptive bath chair for him. It looks like a lounge chair for the tub.

Luckily, Eliah has not had any kidney stones, and his blood pressure seems to be under control. We found a professional blood pressure monitor on ebay for $300, so we've been able to track his pressure at home. We do his "infusions" (shots) every morning. It's time consuming, expensive and he screams the entire time (no pain, it's sensory overload), but we seem to manage pretty well. It's funny, if we were to get robbed, the most valuable thing we have in this house is the $30,000 worth of Chinese Hamster Ovaries we have in the fridge. I don't know how much resale value at a pawn shop that would have though.

Now comes the "not so great" stuff. Back in January, Eliah had an eye exam that revealed that he had some damage to the nerves in his right eye. The doctor told me that it could still be within the range of normal, and that he couldn't tell how it affected Eliah's eyesight. And that he can't tell me what Eliah can see until he is older. And since January, I have been under the impression that Eliah could see. I just found out today about a report, from the Opthamologist, that was sent to Child Developmental Services (where we get PT & OT), that Eliah's vision is 20/2400 and that we need to be seen by the School for the Blind. Legally blind is 20/200. So basically, as of January Eliah has been close to totally blind. This website shows a picture, on the very bottom left, that represents what Eliah's vision is like at 20/2400... Needless to say, I got the wind knocked out of my sails today.

The good news is, he was still on two major seizure medications at the time of the test. And he was having a lot of shaking in his eyes at the time. In the past three weeks, Eliah's eyes have stopped shaking, and he is starting to track objects. We go back to the Opthamologist on Wednesday, so I am anxious to see what his visual accuity is this time.
Anyway, what a year. I can't believe we've made it. And I am so proud and thankful for my strong boy and my wonderful family.

Lots of love to all,

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