Monday, June 21, 2010

Hypotonia

I expected some delays with Cooper being born 9 weeks early and I've gotten used to figuring out his adjusted age milestones. I read my weekly milestone article delivered in my inbox with anticipation and trepidation. It only turned into trepidation over the last couple of months or so though...as I read what he should be doing by his adjusted age and my heart would drop at the realization that he was doing NONE of what babies his (adjusted) age should be doing...


Cooper has a bestfriend that was born on January 5, 2010 so 3 days after Cooper's due date. I was using this friend as kind of a guide as to where Cooper should be...I know kids reach their milestones at different rates but my heart would break as each week I would watch this baby doing cartwheels around Coop. I would tell myself that Coop would just get there eventually...Now, looking back if being honest with myself, Coop has only rolled from tummy to back a handful of times, only rolled from back to tummy once, he is no where in the proximity of sitting up, he bears NO weight on his legs, he doesn't transfer toys from one hand to another...the list goes on and on of our developmental delays...I have a joke that I tell myself "well, there isn't a question on a college application that asks when you starting walking..."

Coop has been going to a physical therapist once a week for a little over a month now. She expressed some concerns to me last week about Cooper being hypotonic which means he has low muscle tone so I immediately made an appointment with his ped being the neurotic, I mean proactive mother that I am...and, he agreed with her diagnosis. He was mostly alarmed at the fact that Cooper won't bear any weight on his legs with his actually comment being "even newborns put up resistance when their feet are placed on the floor...." but Coop just buckles to his knees.

We go to the neurologist this Wednesday to figure out what is causing the hypotonia as the actual diagnosis could mean a variety of things. I've actually stopped looking at the diagnosises for now because I'm going to start having a panic attack...Mostly from what I've read is that hypotonia is normally lumped into two different diagnosises: either Cerebral Palsy if they think the disconnect lies in the brain or Muscular Dystrophy if they think the disconnect lies in the muscles. Again, because the diagnosis of hypotonia just means low muscle tone it could be something small or something big. I'm praying wholeheartedly for the something small as any parent would I imagine...

I do know one thing for certain as a mother with a child that (most likely just waiting on severity) has a disability is that my dreams for him and his life remain the same. I joke with family and friends that I want him to play football for UGA but in all seriousness, I just want him to be happy. It will be my dying goal to achieve that happy for him and teach him to be happy just for the simple fact of being alive.

If you could just pray for the something small diagnosis or better yet (because God can do all things!) that Cooper's body be cured of whatever this is...

So, I want to end this with a picture of my love...of the smile that warms my heart everytime no matter what is going on....

17 comments:

  1. I am so sorry. I'll keep him in my prayers.

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  2. I know exactly what you're going through girl. You and Cooper and in our thoughts and prayers!!

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  3. I am so sorry. I am thinking about you guys. He is such a miracle and will continue to be no matter what.

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  4. I'm sorry you are going through this. I know it's not really the same thing, but I am terrified of Tessa getting diagnosed with dyslexia and ADD because of what it will mean for the rest of her life. On the other hand, I hope we DO get a diagnosis because that means we can figure out a solution and get her help.

    Big hugs to you. Cooper is my thoughts, and so are you.

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  5. I am sorry you are going through this. Just remember that babies do amazing things everyday and I will keep your family in my prayers.
    Hugs

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  6. Everything that he does amazes me :) I'm a mommy that revels in every small thing that's for sure :)

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  7. I will be praying for Coop and your family. God definately has amazing plans for this precious little guy, he's already such a miracle!

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  8. Quit reading!!! Hopefully it's nothing substantial, but if it is, you will get through it, no matter what. I promise. It might suck some times, and there might be some serious pity parties, but you will get through it. Huge hugs to you every hour on the hour between now and Wednesday at 3.

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  9. I know, Susan! I seriously thought I would have a heart attack after reading about Muscular Dystrophy!

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  10. i will be praying....its so scary sometimes, being a preemie mom...i'm glad you are being proactive about it...and just for encouragement...one of my best friends daughter was born at 27 weeks...she was diagnosed with low muscle tone and she had PT for 3 years but otherwise she is a healthy, almost 4 year old. she's pretty much perfect....praying the same for your little guy!

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  11. Devon~ That's the best thing I've heard all day! Thanks for sharing your bf's story and my hope is the same, too!

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  12. Oh Jen, I didn't realize how serious this might be. I am definitely praying that it's something minor. I've said it before, but I'm always here any time you need to talk. :)

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  13. I found your blog through another and I saw the title of this post so I had to comment. My 17 month old daughter was diagnosed with hypotonia/low muscle tone at about 1 year. She was only beginning to crawl and was not pulling up to stand at all. We have been doing PT since that time and she is now walking most of the time though she still crawls some as well. She is otherwise very healthy, very verbal, and they don't believe that she has any neurological issues. Hope this works out the same for you and your little guy.

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  14. Ah, honey, I'm so sorry you're facing this. Thoughts and prayers for your family and especially for your sweet rainbow. Let us know what you learn. ((Hugs))

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  15. We will be sending many many prayers your way! Cooper is a strong little boy who is loved beyond belief. I have no doubt that whatever comes your way you will face it will strength and love and you will be successful!

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  16. Jen, know I am thinking and praying for you guys. ((HUGS))

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  17. praying for Cooper...(((HUGS)))
    he is so sweet,I look at it this way his charming looks will get him into college :))

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