Hypotonia: Part Three: Treatments

Here's the final installment about Hypotonia. I hope that these postings have been informative and helpful for everyone that offers us so much love and support and anyone out there in a similar situation. Sometimes, when someone inquires about Rae's condition it's difficult to find the right words and I hope that these postings have helped.

Treatments

One word: Therapy

Therapy can consist of physical, occupational, and speech either individually or combined. In some cases children may also work with sensory stimulation programs depending on the individual needs of the child.  I wish I could off more, but that's really all we know to do. I've read many parents say they just treat whatever symptoms present themselves at the time and have quit searching for a cause.

Rae's play area complete with exercise peanut ball.

There's no magic cure-all pill, no surgical procedure, no fairy godmother that can change the situation and honestly, that's heart breaking to admit. I struggle with that fact on a weekly, if not daily, basis. We may not be able to "fix" her, but we can make her stronger! That's why therapy is so important.

Rae has physical therapy (PT) once a week for an hour. Some weeks are better than others and we have had progress, but every week is different. During the rest of the week it is up to us (family) to make sure she gets additional therapy. The "routine" varies each day and when we're thrown off our routine it can take a week to get back on track.

We try to show her the proper way to sit up, lay down, roll over, and army crawl.

We make her use her hands to hold her bottle, grab small pieces of food, and reach for toys (even if that toy is your nose).

Beeping Great Grandpa's Nose

 We use a sensory brush (almost daily), peanut exercise ball, various toys, and a sensory box full of unpopped popcorn. 

Using the sensory brush

Working in her sensory box.

These therapy services are provided through the Early Intervention Program (a.k.a. Part C service) which is part of the federal law, Individuals with Disabilities Act (IDEA). We are very grateful that this type of assistance is offered and until I learned about the program I felt lost about what steps we would take after her diagnosis of Benign Congenital Hypotonia. Here are some links that I have found helpful:

• National Dissemination Center for Children with Disabilities - info about Early Intervention
• Early Steps - Florida's Early Intervention Program
• Exercises for Hypotonia - a resource for Down Syndrome that offers info on Hypotonia
• Brain & Gym Exercises - from LIVESTONG
• e-Special Needs - toys and adaptive equipment, Amazon is a good resource if you know what you are looking for and sometimes I just surf for toy ideas.
• iVillage Hypotonia Message Board - parents offering advice and support

With time and patience Hypotonia can get better, but it does not go away and in most cases is life long. From personal experience there is one other treatment I can offer to the parents, family and friends of children with Hypotonia...chill. Just chill. You can't speed up their development to the point they are back on the "normal" course. I drove myself batty for the first couple of months trying to make every moment therapeutic and instead felt deprived of the joy of just being with Rae. Be aware of the day to day opportunities to use therapy, but don't wrap yourself so tight that you forget to just play. Play is an important part of your child's development. So, chill out, sit down, and play.

Sun Beams: Little Victories

I've noticed that many of my postings tend to feel a little heavy and focus on the burdens and stresses that weigh on my weary mind. I don't want that to become the primary voice of this blog and would like to take the time to celebrate our Little Victories.

1. On December 19th, while waiting for a transaction to be completed at Verizon, we noticed that Rae held and drank an entire 8 ounce bottle...by HERSELF! That is quite the accomplishment considering we have been working with her for over three months just to get her to drink from a bottle much less hold it on her own. We were thrilled! I even took a picture so I could remember the moment. Yup, I'm one of those Mom's. *Say cheese!*
2. In the last two weeks we have noticed an increase in her rolling over . Of course she isn't always thrilled when she rolls over, but she'll figure out she can roll back over eventually. I never knew rolling over was such an important building block of child development (until Rae didn't do it) and we hope it will soon lead to army crawling...maybe...I'm keeping my fingers crossed.
3. Rae is back to sitting unsupported for longer than a minute! We actually reached just over a minute and a half during her therapy session this week!!  We were up to almost three minutes before Thanksgiving then she grew. Every time she has some growth spurt or feels under the weather she regresses a little. It's like playing chutes and ladders and we keep landing on the dang chute...Whee!
4. She now has 16 teeth and is not afraid to use them! While I know this isn't a gross motor-skill milestone I am glad she has a mouth full of choppers. From the time she was 6 months till she was about 10 months it was the only thing I could really point to as a big "yippie" in our home. Other parents cooed over crawling, cruising, and walking...we had teeth. Beautiful, straight, white teeth.
5. When being held, Rae has started holding onto the shirt of whoever is toting her around. Doesn't sound like much until you've carried 20 pounds of rag doll around for more than five minutes. She's becoming quite heavy and that tiny bit of assistance is more than welcomed.
6. Her find motor skills are progressing nicely as we now have battles over picking the puzzle pieces out of her foam floor mat. I'll come into the living room and the frog no longer has eyes or the helicopter is missing its rotor blades. I swear I'm going to flip it upside down and duct tape it together.
7. She is using her arms and hands as a form of expression/communication more often. Waving them around when she's happy, tapping them on her high chair tray when she wants "more," and every once in awhile she will sorta wave. The best one so far happened while I was singing "Little Bunny Foo-Foo" and she started bouncing her arm up and down along with mine. It was a wonderful moment for me and it hasn't happened since, but that one time was just what I needed.
8. Rae has some sensory issues, for lack of better wording, and for whatever reason soft, furry toys that talk really upset her. For her birthday she received a shake and giggle Elmo from her Aunt & Uncle and (much to my relief) she LOVE's it! Prior to this bright red, giggling, muppet she would pull her arms back, scrunch up her face, whimper, tears gathering in the corner of her blue eyes, and shake in fear of anything furry that made noise. Her fear of talking stuffed animals has been overridden by her love of Elmo. Ahhhh...the power of Elmo! (la-la-lala...)

Some of these Little Victories are spread out over a month or more and that is just part of living in a Hypotonic World. Everything is done at Rae's pace and only she seems to know what speed that pace is set and when we may arrive to our next milestone. We are all just along for the ride, supporting her development, celebrating our Little Victories, and doing the best we can to not let the frustrations overshadow the joys of this journey.