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Garrett's Hypotonia Website

Mommy's Story - What it was like in the beginning

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My feelings about what it was like when I knew something was wrong.
 
This was written in July 2004 when Garrett was 13 months old.
Sorry this page is really wordy.  (Is that even a word?!?)  If you make it all the way to the end, I hope it helps you with your own feelings.  Even if you don't make it all the way to the end or just skim through, I hope you get the sense that you are not alone and that someone else DOES understand!
 
I'm not sure of the exact time when I realized my son wasn't developing normally.  I do remember when he was 7 months old and we were down at Disney World as one moment when I just knew something was wrong but didn't really want to admit it.  I tried to sit Garrett up on the bed, and he immediately fell forward.  He didn't even sit for 1 second.  He fell like a 4-month-old would fall if you did that.  After that, I tossed several things around in my head about what could be wrong, but I dismissed the thoughts.  Everything I read said 9 months, and some even suggested 12 months as the time to be concerned if a baby could not sit unassisted.  Even though I dismissed the thoughts, I couldn't help but think about it every now and then.
 
As Garrett's cousin started to sit unassisted and do things he couldn't do around 8-9 months of age, I really began to worry and think about it every day.  (His cousin is 2 weeks younger than him.)  It was little things most people wouldn't really think about worrying about.  For example, he couldn't sit up in his stroller without leaning against the back.  His cousin was sitting up straight in her stroller, and she could even sit up straight with the stroller reclined.  She was pivoting around on her belly and eventually started to army crawl.  Garrett could push up with his arms to get his chest off the ground, but he couldn't pivot.  He also just didn't feel as stable as his cousin.  When I picked him up, I felt like he was going to bend over backwards and fall out of my arms.  Now I know this is referred to as being floppy.
 
So, I know you're not supposed to compare babies, but we all do it at some point.  In alot of ways, I'm glad I did compare Garrett to his cousin, and I'm glad they are so close in age.  Garrett is my only child, and I'm not around many children his age.  I'm not sure I would have picked up on his hypotonia as early as I did if I hadn't been able to compare him.  I probably would have known something was wrong just because of him being behind on sitting up, but I think it may have been at his 12 month check-up that I would have discussed my concerns with the pediatrician.
 
I got off on a little tangent there...sorry.  Anyway,  when Garrett was 8 months old, I went to the babycenter.com website to the message boards.  I posted my concerns and a person responded with a message about low muscle tone.  She said that my son sounded similar to her daughter.  I went to the web to research it (even though she told me not to bother, that most of the web sites make hypotonia sound worse than it is...she was right).  I did find a few websites that had good information, but they also included information on various syndromes that could be the cause of the hypotonia.  Of course, I started reasearching those and had a new diagnosis for my son every day if he had 3 or 4 of 15 symptoms of the syndrome.  I was driving myself crazy!
 
I finally called Early Intervention to get my son evaluated.  His first evaluation put him at a 5-month-old level overall, and he was 9 months old.  I sat on the floor and cried and cried and cried.  It was the first time that I had been told that my son was in fact delayed and needed therapy.  Everyone I talked to or met with through the Early Intervention program was wonderful and sympathetic, but it still hurt to know that my son wasn't normal.
 
I moved on to blaming myself.  Was it something I did while I was pregnant?  Oh my gosh, I took a few doses of sinus medication before I knew I was pregnant.  I also had a few drinks before I knew I was pregnant.  I was taking an anti-biotic for acne.  I ran a marathon when I was 6 weeks pregnant and took Advil a few times for knee pain.  I could go on and on here.  The point is, I still come back to those things on occasion, jump on the internet to research the effects of these things on an unborn baby, and come up with the same answer each and every time...There isn't any evidence that any of these things cause low muscle tone in an infant.
 
Even if it was something I took or did while I was pregnant, I didn't do it with intent to harm him.  I didn't know I was pregnant until 3 weeks after conception.  I thought I might be pregnant a week before I officially found out, so I stopped all of the "pregnancy no-no's" as soon as I thought I might be pregnant.  I was so worried about running the marathon, but my doctor assured me it was fine because I had trained for it.
 
Surprisingly, I am okay with Garrett being hypotonic.  At first, I didn't want to tell anyone there was something wrong.  Now, when someone asks about him, I find myself beaming about his latest accomplishment.  Most mothers of 13-month-olds are talking about their babies walking and learning new words.  I'm talking about Garrett holding his own sippy cup or being about to stand against the couch and hold on for 20 seconds without falling over!  I think the reason I am okay with it is because I'm grateful I have him here with me.  I've heard too many stories of babies not surviving longer than a few days (not hypotonic babies, babies with life-threatening illnesses) or others being lost in tragic accidents.  Don't get me wrong, I still have moments when I wish Garrett was normal.  I think that's just natural though.
 
One of the most difficult things I'm dealing with now is trying to be at peace with the possibility that I may never know why my son is hypotonic.  That is why I am debating whether or not to go through all of the tests to find a reason for the hypotonia.  My instinct tells me there is something more than just hypotonia, but my instinct also tells me he'll be fine as long as I continue to work with him.  There's no rush on the testing right now.  He's making great progress, and that's all I can ask for.  In his own time he'll walk and talk.  If he keeps progressing at this rate, he should be on target with his peers by the time he goes to kindergarten.  I fear his cognitive abilities will always lag behind his peers, but you really can't tell with a 13-month-old where he'll be with his cognitive skills in 4 years!  I'll just have to be patient on that one!

Please contact my Mommy at HypotonicBabies@hotmail.com!