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Garrett's Hypotonia Website

November 2004

Pectus Excavatum
My Hypotonia Story
My Journal
Family Photo Album

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Garrett now has 8 teeth!  Yippee!  I was afraid his teeth were going to come in one at a time with months between each one.  That was how the pattern was going, but now they're popping in constantly.  Last week he was a monster.  He went 3 days with little to no napping, and he was big time Mr. Grumpy Pants!  I noticed that he had 2 more top front teeth that came through, and the next day I saw his top 2 molars.  Holy cow!  No wonder he was a grump.
We made another trip to the geneticist about 2 weeks ago.  He was tested for several metabolic disorders, but all tests came back normal.  That was good news!  But, I didn't think he had a metabolic disorder.  The small amount of research I did on them said that the child would have trouble gaining weight, would be throwing up constantly, maybe have seizures, etc.  Garrett didn't fit into many of the symptoms.  I didn't mind having him tested though.  It's something else we can say we ruled out.  He also has an MRI scheduled for Dec. 3.  I'm not expecting to find anything abnormal from that because that has been the pattern these days.  It would be nice though so we could possibly stop testing him for everything under the sun.
I'm still waiting to hear a decision about Garrett's Medicaid application.  I received a waiver form in the mail a few days ago to release Garrett's medical info from Children's Hospital to the Medicaid office.  So, I don't know how long it will take for a decision to be made.  Gosh I hope he qualifies.  It would help out so much with keeping him all of his therapy. 
Garrett's language skills seem to be improving.  He now says "gully gully gully" and "goy goy goy".  It's a start!  He's trying so hard to pull to a stand, but he keeps falling down.  I think it will be like all of his other gross motor skills.  He'll just figure it out one day and then keep perfecting it.
I started typing under the October Diary and realized that it's not October anymore!!  Garrett had his IFSP meeting last Thursday, and his application for Medicaid is FINALLY in process.  Hopefully he'll get approved for Medicaid.  If he doesn't, all of his therapy is going to be cut back significantly.
I'm concerned about Garrett's cognitive skills.  It seems he hasn't made much progress.  My biggest fear (mental retardation) may be coming true.  It's really way to early to tell, but I just don't know.  I'm hoping it's just his personality and the fact that he's just now able to explore his environment.  I talked to his geneticist about this and that I wanted an MRI and CT scan.  I think they are going to order those tests for him, but I think we have to go in to see the doctor first.  I really want to talk to a neurologist as well, so maybe they be able to get me a referral.
The drama just never ends.  I still get so ticked off when I hear parents complain about their completely normal kids being behind.  They have no idea.  For whatever reason, everyone seems to think all kids should be walking by their first birthday.  The average age is 13 months, but no matter how many times I tell people that, they don't seem to listen.  Some kids don't walk until 18 months.  Get over it people!  Sorry, I'm getting a little harsh, but I can't help it.
I'll end on a good note...Garrett can take a few steps with me only holding onto ONE OF HIS HANDS!!!  What an accomplishment for him!  His new PT goal for the next 6 months is to be walking without assistance!!  I didn't want that to be his goal at first, but then it was pointed out to me that I also didn't think he would be crawling by now.  I couldn't argue with that!  My little man went from not being able to sit unassisted for more than a few seconds to crawling in less than 6 months!  That's such great progress!!!

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