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Garrett's Hypotonia Website

September 2004

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9/20/04
I'm getting better at crawling.  I get up on my hands and knees, rock back and forth, fall on my belly, and then start army crawling.  After I've moved a few inches, I start the process all over again.  Mommy thinks it's funny.  She says I look like an inch worm!  I'm really slow at crawling, and my form is terrible, but it's a start.  If I'm in the family room playing with my toys and see Mommy in the kitchen or walk up the stairs, I go after her. 
 
Mommy took me to the park one day to let me practice my new skill outside.  Another mommy said that it was so cute I was learning to crawl.  She asked Mommy how old I was, and when Mommy said "15 months", the lady looked really confused.  Mommy had to tell her that I have low muscle tone because most 15 month olds are either pros at crawling or they are walking.  I won't be walking unassisted for awhile, probably not until my 2nd birthday.
 
 
9/13/04
I have a new accomplishment as of yesterday...I CAN CRAWL!!!!!!!!  It was army crawling, but that counts!  I did it several times for Mommy and for Daddy, but I was really angry the whole time I was doing it!  Dan is on vacation this week, so Mommy hopes I'll get really good at it and be able to show off for Dan when he's back next week.  I have a bad feeling Mommy is going to make me practice my new skill over and over again today.
 
 
9/9/04
I'm approved for respite care and the next step is getting my application together for Medicaid!!!!  Mommy is thrilled because now my therapy won't be cut.  The great state of KY had to cut back on the amount of therapy for each child through the First Steps program.  Mommy was scared about cutting back on my therapy, so she decided to see if I could get qualified for Medicare.  I had to qualify for respite care in order to qualify for Medicaid.  So, now I'll have a nurse come to the house and help me out with some things I need to work on, AND the financial burden of my medical expenses is gone, at least until February.  This is such GREAT news for us!!!!!
 
I also wanted to say that I pulled up several times in my PT session yesterday!  I was sitting on a stool and pulled up to stand all by myself!  Mommy thinks I'll be pulling up on the furniture in the next few months.   At speech yesterday, I may have learned my first sign.  When it was my turn to throw the ball, I pointed to myself with my thumb.  Mommy thought it was an accident, but I did it 4 separate times.  We'll see if I remember how to do it again.
 
 
9/5/04
I can't believe summer is now over!  Wow!  It's a little sad for Mommy.  At this time last year she was imagining me walking around in the water, filling up cups of water in the pool and then dumping them out.  I did walk around in the water, but she had to hold onto my hands.  It wasn't exactly the image she had in her head, but at least I CAN walk around with assistance.  It could be so much worse...Mommy has to constantly remind herself of that.  Maybe next year I'll be able to do everything she had imagined me doing this summer.
 
On another subject, I went to see the doctor on Friday.  He doesn't think I have Beckwith Wiedemann Syndrome.  Mommy was relieved yet frustrated.  She was hoping to have a diagnosis, but now realizes it's a good thing that we have ruled something out.  Even if I never get a diagnosis, Mommy hopes to rule out several things that could be wrong.  The doctor seems to think we should start with seeing genetics because I do have a few dysmorphic features.  If my hypotonia was purely brain based, chances are I wouldn't have any dysmorphic features.  I could have brain based hypotonia though and my physical features be nothing at all.  Who knows anymore.  I am everyone's little puzzle!

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Please contact my Mommy at HypotonicBabies@hotmail.com!