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Garrett's Hypotonia Website

December 2004

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Playing in the snow for the first time 12-23-04

Another Christmas has passed.  Thank goodness!  Why are holidays so rushed and crazy?  We did get to spend Christmas day at home doing nothing.  It was nice to be able to just sit around the house and relax.  Garrett got so many toys!  I don't know where to put everything!  Our living room looks more like a toy store than a living room!  He had fun unwrapping his gifts, and he even plays with some of them.  The door stops throughout the house are still his favorite "toys"!
We took Garrett outside in the snow for the first time a few days ago.  He was so bundled up that he couldn't move!  We attempted to pull him around in a sled, but he wasn't too excited about it.  Maybe next year!  I think he's still a little too young to understand that being out in 7 degree weather with 6 inches of snow is fun!
Garrett went to see the Opthamologist today.  I'll give you 1 guess about wether or not the doctor found something wrong.  You have a 50/50 chance here, but I'll give you a little hint to increase your odds...have we ever gone to see a doctor and NOT found something wrong?
For those of you that guessed that the doctor did find something, give yourselves a pat on the back!  I can joke about this because it's really not a big deal at this point.  That, and I am starting to find it a little humorous that Garrett has something wrong in every area possible.  Not that it is a laughing matter by any means, but sometimes I wonder if some of the things "wrong" with him are things that would work out on their own over time.  If he didn't have the hypotonia, I wonder how many of these things would even be a concern.
Anyway, Garrett has one far-sighted eye and one near-sighted eye.  Typically, most 18 month old children are slightly far-sighted anyway.  (That was my new bit of knowledge I learned today!)  Garrett's far-sighted eye seems to be just as far-sighted as it should be.  That near-sighted eye isn't all that near-sighted, so it's a wait and see approach from this point.  The overall point here is that his vision is nothing to worry about...for now.  We do have to go back in 3 months to see if anything has gotten worse.  If either eye has gotten worse, he will most likely need to wear glasses.  There is a chance his eyes will correct themselves, but we're going to watch this closely to know one way or the other what to do.  The GREAT thing about this is that IT CAN BE TREATED!!!!!!  Woo hoo!
From what I understand, one eye being near-sighted and one being far-sighted confuses the brain.  Eventually, the brain will start using one eye more than the other.  If that starts happening, the strong eye would be patched and Garrett would wear glasses to help his weak eye.  The doctor is hoping we won't need to patch him.  If his eyes do get worse, hopefully the glasses will take care of the problem.
I'm not really all that concerned at this point.  I've been near-sighted since 2nd grade, and I started wearing glasses in 3rd grade.  My vision is crap and has been for as long as I can remember.  I would rather Garrett be able to wait until grade school to wear glasses, but I don't think he'll need them for the rest of his life in order to fix his vision problem that he has now.
Oh the joy of raising a special needs child!  It's always something.
Garrett had a head MRI last Friday, and we have the results.  They did find an abnormality of his brain.  I'm not exactly sure how I feel about it, but my reason for starting down the path of all this testing was to hopefully get a diagnosis for him.  Well, we just might have one.
Bear with me here.  I'm not a doctor, and I don't even pretend to know much about brain anatomy!  I'll do the best I can to explain what I was told.  It's something along these lines of what they found...the ventricles in his brain that move the fluid around are slightly abnormal.  (I think "fluid" might mean the white matter.  Don't quote me on any of this though.)  The good news is that this looks to be very mild and not really all that off from what is considered normal.  Typically, the type of abnormality that Garrett has is seen in people with cerebral palsy.  However, Garrett has HYPOtonia and not HYPERtonia.  Hmmm....I wonder if this really explains his hypotonia then.  (Nothing is ever black and white in hypotonia world.)  I have been told that low tone can change to high tone over the course of a few years.  Well, I guess we'll have to keep a close eye on that.  This area of the brain also affects motor planning.  That would explain why Garrett "claps" the way he does and why he seems to have issues putting things where he wants them to go.  This could also mean his cognitive skills aren't really behind but that he has problems getting his body to do what he wants it to do.
This most likely happened while he was a fetus.  I asked the geneticist what causes it, and he said that no one really knows.  Some things just happen while a baby is developing, and there's no reason for it other than that's just how nature works sometimes.  Not really the answer I was hoping for, but I'll just have to settle for that right now.  I learned early on that having a child with an undiagnosed condition is full of "I don't know why" statements from doctors.
Garrett is being referred to a pediatric neurologist who also specializes in developmental disorders.  The geneticist felt this was the best course of action for us because he's not really certain if this brain abnormality explains everything.  This could just be a piece of the puzzle rather than the whole picture.  Garrett is also going to have more blood drawn to check for a few genetic disorders that deal with this portion of the brain.  (Ugh!  More blood!  The poor child has had more blood drawn in the past few months than I've had in my entire life!)
I'm hoping that this will get us on the right track to finding a diagnosis.  At least we have something to go on now.  All of the testing we have done so far were basically just guesses based on physical features and other symptoms.
I don't know how long it will be before we have an appointment with the neurologist.  I assume it will be at least a month or 2 before we get in.  Oh well, I think we'll be fine waiting.  Garrett continues to make progress, so there's really no big rush.
So there you have it.  I feel like we just took a huge step forward in getting to the bottom of all this.  In some ways I am relieved that we finally found a clue to go on, and in other ways I'm sad that they've found something.  Part of me wanted him to remain a medical mystery for the rest of his life.  You know, I was thinking today that if someone had told me 6 months ago that I would feel some peace in hearing that my son had a brain abnormality, I would have thought that person was nuts.  After some of the very scary diseases that Garrett was tested for, this is nothing.  Even hearing that my son may have cerebral palsy seems like a blessing compared to some of the other diseases and disabilities that have been mentioned. 
I'm keeping my fingers crossed that this really is a mild abnormality.  If not, well, Garrett is still Garrett no matter what labels he is given.  He has the biggest smile I have ever seen.  As long as he doesn't lose that smile, no label will ever describe the person that he really is.

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