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Medical updates

Ttotally unrelated photo, of random things you can buy in the back alleys of Beijing.

1st the oldies:
Avery will have 3 teeth extracted on the 16th, and her bone graft surgery will be a month later.  This is one of the BIG ones for her.  Hip bone will be used to bridge the gap in her jawbone, so that teeth or implants can be attached to it later in life.

Wes has not grown -at all, except his feet.  He still wears the same clothes he did 2 years ago.  He has hypothyroidism, which was diagnosed 2 years ago.   He will now be tested by an endocrinologist to see why he is not growing.

Now the newbies:
Jenna has 20/2000 vision in her right eye (legally blind is 20/200), and no vision to speak of in her left eye.  Her under developed eyeballs are a birth defect, and not a progressive disease like Waid's, so she is expected to keep this level of vision throughout life.  Although her number is better than Waid's, it is interesting to see the differences of what they can actually see.  Jenna cannot see to pick up crayons under the kitchen table, Waid can--just 1 example.
She also has nystagmus--the constant twitching- like Waid has.
She now has cute glasses to help the right eye out a bit, but mostly for protection.
The low-vision specialist believes she will be a large print reader, but since she already knows some braille, we will proceed with that also.  Many people that can read large print, are much more efficient reading braille, and also use it when their eyes are fatiqued.
Other than her eyes, she appears to be healthy as a horse--and solid as one too.  Oh--she is scheduled for a hearing test, just because her China paperwork said she had mild nerve damage.

AJ-----thankfully, does not have Optic Nerve Hypoplasia-- a syndrome associated with his brain condition, that would cause him to lose his sight.  He actually sees great, and is the only one without glasses.  But, he does have Fourth Nerve Palsy.  Basically, his eyes are misaligned.  He holds his head crooked to make the alignment better, but it will have to be corrected with eye surgery later this year.
AJ is being scheduled for a hearing test, a check from the heart Dr., to make sure everything is fine with his repaired heart defect, and a geneticist.  A neurologist will see him in March, concerning his brain defect, we're not sure what all that might reveal.
We had been concerned about his large/swolen joints and bent fingers and toes, and ask our pediatrician about it.  We were thinking rickets or arthritis.  The Dr discovered his arms are "locked"--they do not have the full range of motion.  Since he has so many other challenges, he will get genetics testing, then proceed to an orthapedic surgeon. 
AJ will begin seeing our speech therapist next week, and we're guessing he may also need some occupational therapy.
We may also have to investigate concerning his weight, just 50 lbs, at 52" tall.  His arms are the same size as Waid's.  His knees are the largest part of his legs.  Avery and Waid, at age 6 only weigh 36 and 34lbs., but are growing, and well proportioned, just have small frames.  So we will be closely watching AJ's weight and muscle tone (which is extremely lacking right now).
The biggie is the neurologist appt in March.  We are unsure what is caused by the missing corpus callosum, and what are developmental delays for other reasons.  He worked addition problems today, with sums up to 20!, but cannot remember to bring his pajamas into the bathroom at bath time.
In some ways, the reason does not matter, but the more info we have, equips us to help him reach his full potential, and whatever God has planned for him.

2 comments:

  1. I'm exhausted just reading it; although I am dealing with my fair share as well. Sometimes it's just a bit overwhelming, isn't it?
    Blessings to you!
    Jenny
    www.ourplansmultiplied.blogspot.com

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  2. That sounds like a lot of info! So glad you are making progress in the appointment arena; I know it can be overwhelming. You're doing a great job!

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