Wednesday, August 15, 2012

Rock 'n Roll

This week started out really ROCKy. I've just been struggling so much with Aerin's developmental delays that it's really been weighing me down. My head knows that this is par for the course with PWS, but my heart just breaks over and over again for her sweet, frail little body. One of the key features of PWS  is hypotonia, or low muscle tone. I find that this is a really hard concept to understand, especially as it's not as simple as "her muscles are weak". I found this great article on what it means to have low muscle tone and the PT who wrote it was able to describe it within the context of us regular-toned folks:

Muscle tone is the resting state of your muscles.  When a child has low muscle tone it means that they need to put a lot more energy into getting their muscles to turn on to do what they want them to do.  I often try to explain this to parents by describing that feeling when you finally get to sink into the couch or your favorite arm chair and relax and then someone calls you from the other room and you have to rev up the energy to get up.  Think about having to do that every time you move because that’s what it can be like for kiddos who have low tone.

Basically, having low muscle tone means that Aerin has to work at least twice as hard as everyone else to complete even the most basic of movements. Aerin has what is called a "global delay," meaning (among other things) that she is very late in meeting her milestones. She is weakest in her trunk and upper extremities, which is why she still can't lift her head at 4.5 months or raise her arms to swat at or grab at a toy. Her lower body is stronger--in fact, she's got quite a kick and I can't wait until she can swim, she'll knock it out of the park.

It's just so very hard not to compare her to other sweet babies and, at those times, the discouragement is so very tangible it hurts.

But, as always, when there is a question God is prepared with His answer. Our answer came in the form of our physical therapist. We've been seeing her regularly for a couple of weeks now and she is very sweet with Aerin and very encouraging to me. She is very proactive and we are already getting Aerin a pair of hip helpers to address Aerin's severe hip abduction (i.e. her legs splay outward like a frog when she is laying down and this can lead to several problems later, not the least of which is hip displasia). We are going to order a set of bamboo braces to help support Aerin as she learns to push up on her hands while on her tummy. And she is going to start investigating whether or not a spio suit will help give Aerin more proprioceptive feedback all over her body, thus encouraging her muscles to engage and work more. And these are just the various orthoses that are in her plan to help Aerin reach those milestones in a more timely manner. She also has established a thorough program of "exercises" that we do with her each day to help push Aerin towards her full, ever-blossoming potential.

So, we are getting there. Slowly but surely. I have to constantly remember that Aerin is on her own timeline and no one else's. It's not fair to her for me to constantly be comparing her to others when she is marching right along to the beat of her own little drum. The Lord has made a way for my daughter and she will follow it on His and her terms, not mine or the world's.

All of that being Aerin ROLLed over for the first time! We put her on her tummy this morning for some tummy time and she just plain decided that she wasn't gonna have it, so she just popped herself right back over to her back where she was just fine, thank you very much. Yes! She ROLLed!

It's just like my Lord to ROLL away the ROCK I find myself facing. <3


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