Sunday, February 10, 2013

Perfectly Adelyn, pt 2

If you're reading this, you've probably already read the first part of Perfectly Adelyn. If you haven't, you can find it here. Since the initial post, we've started our services. In the past month we've had 2 sessions of PT, 2 sessions of OT & 1 session with the teacher (we had a snow day the last time she was supposed to come). Plus we do an hour + of home exercises a day. Things are going great. Adelyn has gotten really fast at her army crawl; she's sitting in a side sit position (which is a big deal, I guess?); she can go from a laying position to a sitting position; she's trying to pull up on things and her core strength is improving. She's even signing "all done" "milk" and sometimes "more" and waving hi & bye. She's a little PT/OT all star!

But, the first session with the physical therapist was hard. For Adelyn (for obvious reasons) and for me. It was then I heard a word that I had never heard before. A word that I have incessantly researched in the past month. Within the first few minutes of our initial session, our physical therapist told me that Adelyn has hypotonia or low muscle tone. My first thought was "okay, that's what we're here for". We knew her muscles weren't toned and PT should help build that up. Right. Right? No, the low muscle tone she spoke of was not the muscle tone you think of when you think of exercise or weight training. It's not what you refer to when you say "I want to tone up my stomach or arms". Hypotonia is not something cured by exercise. It's not something cured at all. What Adelyn has is a neurological issue that involves the brain and the muscle receptors not working well. The best explanation I have found was this from Wikipedia (yes, I know Wikipedia is not an end all be all of information but this actually seems to explain what other sites are saying as well in more laymen terms for me):

"True muscle tone is the inherent ability of the muscle to respond to a stretch. For example, quickly straighten the flexed elbow of an unsuspecting child with normal tone, will cause their biceps to contract in response (automatic protection against possible injury). When the perceived danger has passed, (which the brain figures out once the stimulus is removed), the muscle relaxes and returns to its normal resting state."
"...The child with low tone has muscles that are slow to initiate a muscle contraction, contract very slowly in response to a stimulus, and cannot maintain a contraction for as long as his 'normal' peers. Because these low-toned muscles do not fully contract before they again relax (muscle accommodates to the stimulus and so shuts down again), they remain loose and very stretchy, never realizing their full potential of maintaining a muscle contraction over time. "

The good news is that Adelyn has very mild hypotonia. While it's nothing that she's going to grow out of, or be cured from, it's also not something that's going to disable her. Also, hypotonia *can* be a sign of bigger neurological issues going on including cerebral palsy, autism, seizures, etc. Because her case is so mild there's no reason to test for these things or believe that it's worse than what it seems on the surface.

As far as treatment goes, she will continue in the Early On program until she is at or above her age as far as milestones & expectations. Or until she turns 3 and ages out at which point she'll begin in a preschool program though our local school district. We're also looking into private PT/OT and possibly speech therapy after her 1st birthday since she only says "ba" and "da" and to no one in particular.

I'm not sure what the long term prognosis holds for Adelyn. Hypotonia has such a large spectrum and we're obviously on the lower end. The most common issues that Adelyn may face long term are clumsiness; difficulty with gross motor skills like running and jumping as well as fine motor skills like writing & cutting; flat feet; sensory perception issues and joint pain. Of course, we can't tell the future. She may have all of these issues. Or none of them. She may be a kid who trips over her own feet or she may be a prima ballerina. Only time will tell. We've already noticed is that Adelyn lacks self confidence. This is something that is associated in part with hypotonia (and sometimes sensory perception disorders, but Adelyn has not been diagnosed with that as of yet) is lack of confidence. As I understand it, because her muscles feel weaker, she doesn't feel as though they will support her so she's cautious to do any activity. Our occupational therapist has noted this on several occasions.

Her best long term treatment will be to keep her muscles strong. While this won't "cure" her, it will help support her joints and compensate for the low muscle tone. For now it will be activities at home with the PT/OT. Then, as she gets older it will be with lots of home activities and sports (horseback riding & swimming are highly recommended). We've always been good about keeping Lily active and in activities and had expected to do the same for Adelyn. We just need to make sure that we are diligent in our plans.

As for me. I'm having a hard time dealing with it all. I know that this doesn't take away from how wonderful she is. I know that she'll never know any life different than what she has (as opposed to someone going blind after being able to see for part of their life). It's still just all too much for my brain and heart to accept right now. I even set up an appointment with our pediatrician to confirm the "diagnosis". I kept thinking that the way Adelyn is progressing the ped would say that she was fine; just a bit delayed. It's the reason why I put off writing this. The reason why I've lost sleep thinking about the "could be-s". They reason I feel like there was still a strand of hope to hold on to. But the doctor shattered that when she agreed with the diagnosis.

What I'm trying to realize is that I have to stop looking up things on the internet. Dr. Google is the devil. I have to remember that she's more than a diagnosis. She's more than words on paper; words written on a screen. A list of symptoms, diagnoses and prognoses. The world is still as open as it was to her 3 months ago before all of this started. She's still a beautiful little girl who's smile can light up the life of anyone around her. She's still the little girl who thinks her sister is the greatest thing around; mama closing the gap at a close second and dada rounding third. She's still the little girl who beats the odds and does things everyone says she will have a hard time doing. She's still Perfectly Adelyn.

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