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Garrett's Hypotonia Website

July 2004

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My July 2004 Diary
I am 13 months old!

eating.jpg
Drinking from my sippy cup (and making a big mess!)

7/30/04
The speech therapist came to visit me yesterday for an evaluation.  I qualified for it.  No surprise there!!  I ranked in the 4th percentile for my age group.  Honestly, Mommy was surprised I even made it on the chart at all!  I've only been able to hear for 2 months.  That's how long it's been since my surgery.  I've been adding new sounds every week, but Mommy thought I should start speech therapy because I would most likely need it at some point in the future anyway.  My daddy had a speech delay and needed speech therapy when he was a child.
 
So, now I have 4 different types of therapy.  The OT will be every other week for an hour, speech will be every week for half an hour, and PT and DI will be every week for an hour.  The sad part here is that in November, I will only be able to receive 90 minutes of therapy a week.  (That's averaged out over a 6 month period.)  The state was way over budget for the Early Intervention program, so they had to make cuts.  Maybe we'll be able to plead my case and get 2 hours each week.  This changes in November for me because that is when I will be re-evaluated.  I know I'll still qualify for everything!  I'm making progress, but I'm still behind!
 
I said a new "word" yesterday.  It was "ingoo".  Mommy doesn't know what I meant.  Igloo, unglue, into, Einstein (my dog)...hmmm, I'm not sure either, Mommy.  It was fun to say though.
 
 
 
7/28/04
Yesterday was my OT evaluation.  Mommy had one of those good days where she thought I truly will be a normal child some day.  The OT agreed with Mommy that I have some low muscle tone in my mouth and hands.  I'm dripping every time I drink from my sippy cup, and I have trouble grasping and holding onto objects the size of or bigger than my hand.  The good news is that my cheeks don't seem to be low tone.  My tongue may have a little low tone, and my lips do have a little.  It's not that bad though, and I should be able to overcome it in a short time!  YAY!!!!!!!  It's so nice to have good news!  My  hands aren't that bad either.  I just need to work on holding things.  I did qualify for OT, but she only thinks I need it every other week because of already getting PT and DI.
 
I also went to visit a daycare where my DI, Jamie, works.  (Mommy thinks it's time I had more interaction with kids my age.)  It's a center for children and adults with special needs, but there are normal kids that attend the daycare also.  Most of the kids in the class I would be in seemed normal, but most had some type of diagnosis that made them special neeeds.  So, they were sort of like me.  I look normal, but I'm special needs.  Mommy was relieved because she thought a lot of the kids were going to be so special needs that they were hooked up to oxygen, feeding tubes, etc.  That makes her sad to see little kids like that.  So, she really liked this place, and so did I.  I played with Jamie and the other kids for half an hour or so, and I took a BIG nap afterwards!!!  I'll be going there 2x a week for 3 hours each day.  This part-time program ends at the end of August, so Mommy needs to think about if she wants to put me in there for 2 full days.  It costs a lot more for the full day program, so she would have to get a job to pay for it!
 
 
 
7/26/04
I started saying "bubububu" and "babababa" again!  I lost the "b" sounds after my tonsillectomy and adenoidectomy, but they are officially back now!  Mommy, my therapists, and my pediatrician weren't too worried about me losing this sound after my surgery.  The surgery opened up a whole new world for me, so I was most likely concentrating on so many other things that speech took a backseat for awhile.
 
I crack up or smile every time Mommy says "baby".  My favorite is when she repeats it over and over again.  I tried saying it too, but it comes out "bububu" or "bababa".  Mommy isn't sure if I'm really trying to say "baby", but she wants to think that I am! 
 
I'm also making lots of "m" sounds lately.  I still don't know how to say any real words, but at least I'm making a lot more sounds than I did 3 months ago!
 
 
 
7/22/04
So far, the only testing Mommy has decided to have done to find a cause for my hypotonia is chromosome testing.  She decided to have this done for several reasons.
  1. It's just a blood test.
  2. If I had a chromosome abnormality, she wanted to see if she or my Daddy were carriers.  If so, that would weigh heavily on their decision to have more children. 
  3. I have a few physical characteristics in addition to hypotonia that she doesn't consier normal.  These are pectus excavatum (sunken breastbone), slightly misshapen ears, and enlarged tonsils and adenoids.

However, my chromosomes are NORMAL!  Whew!  Mommy says that she has never had a moment of sheer relief and joy quite like what she experienced when she received the phone call that my chromosomes are completely normal.

Mommy is still thinking about whether or not to take me for an MRI and CT scan.  I had my tonsils and adenoids removed 2 weeks before my first birthday.  It was a very scary time for Mommy and Daddy, so they think they just want to enjoy me without additional doctor visits for awhile. 

 

7/21/04
Mommy has become concerned that I seem to have a dripping problem when I drink from my sippy cup.  An occupational therapist and a speech/feeding therapist are coming to evaluate me in the next few weeks to see if I need to add those therapies to my list.  The fact that I can drink from a sippy cup at my age seems to be a great thing for a hypotonic child.  I've been drinking from it since I was 10 months old.  Mommy had to hold my cup for me until I was about 12 months.  My little hands and arms just couldn't hold it without her help!
 
 
 
7/20/04
I said MAMA!!!!!!!!!!!!!!!!  I was really angry because Mommy wasn't getting my milk to me fast enough, so Mommy isn't sure if it was a mistake or if I really meant to make that sound.  (Don't tell Mommy, but I was trying to say "mad" because I was mad that she was being so slow!)

 

Things I Have Been Doing for Awhile

I can sit up unassisted for long periods of time now.  I usually fall over when I get distracted, but Mommy puts pillows around me to keep me from hitting my head on the floor.  I have been able to roll in both directions since 6 months of age and push my chest and belly off the ground since 7-8 months of age.  I can't get into a sitting position, pull up, get on my hands and knees by myself, crawl, stand alone, cruise, or walk yet, but I try so hard to do those things!  I love to walk around holding onto someone's fingers.

My hypotonia seems to be in my arms and abdomen but not in his legs.  If you feel my muscles, the muscles in my arms actually feel squishy compared to the muscles in my legs.  My therapists refer to me as their little puzzle.  I have the pincer grasp of a 15-18 month old, but I can't grip a small ball with my hand.  They can't figure that one out at all!

Please contact my Mommy at HypotonicBabies@hotmail.com!