Sunday, February 26, 2012

music and managing



Nothing like some good ole' music therapy, eh, Rachel?

It is not a requirement for staff who work in our home to know how to play the piano, but we truly appreciate the gift of music from those who can.  These two piano pics show Rachel with Kirsten (VON), thoroughly enjoying the songs.  With Mendelt's official music therapy appointments and the musical talents of Kirsten and respite workers, Ashley and Christina, our girls are getting plenty of soul therapy.

(My delayed apologies are extended to my former piano teachers of the 1980s - Phil Spoelstra and Mrs. Kraftcheck - for not practicing each week. I now regret my aversion to the practicing...  At least now big sister Emily is also picking up many songs.)



In terms of the girls' health and low-blood sugar issues, not much has changed since our last post. Both cornstarch and Polycose have been suggested as ways to prolong the digesting process, like a slow carb release technique, which could alleviate the blood sugar from plummeting after a feed.  So far, we are not seeing tremendous results, but we will try these ideas for a few more days.

Rachel has had more difficulty with sitting in her wheelchair for extended period of time, so she also spends time on the couch.  This allows her to be a part of the family action - instead of just laying in her bedroom. :)


Aside from that pain, we have noticed a marked improvement on Rachel's moods. She has been quite happy while being continuously fed, and she no longer grinds her teeth.  We had thought her teeth-grinding was a result of muscle pain, but I read up recently that bruxism (teeth-grinding) is also caused by low blood sugar.  

She's been grinding her teeth for a long time.  Does that mean she's been dealing with low blood sugar for a long time?  That question is only a small part of the ache that comes with parenting a non-verbal child.  They can't tell you about their pain.

* * *


Meet our philosopher.  Actually, these are Emily's glasses, but we thought they fit Janneke's mood.  She is often very stoic and makes very subtle facial expressions -different from Rachel's open expressions.  There are also times when she gets excited and makes all sorts of sounds with her lips, but we have yet to figure out what triggers her moods.  

Janneke still doesn't seem to have the same stamina we remember pre-January, but she is managing time in her scooter chair and her walker.  I think she has also developed some new leg muscles from the effort of dragging her feed pump around.

One of Janneke's favourite things to do is find the computer.  We often watch programs, clips, and DVDs from the computer since it is central to the activity in the home. Janneke has long since figured out that when there is sound, there are often visuals.  She can be found lifting her hands to the keyboard to manipulate what is on the screen.  She continues to be most fascinated with sports, which makes Dad proud.


This coming week, we have a few appointments in Hamilton again.  Hopefully, there will be some light shed on the mystery of these sugar issues.

I have to admit, we are tired of the uncertainty, and we miss our routine from pre-January, but we are learning to manage.  Today we had our first family trip in the van - all six of us! - to church.  It was good to be with our church family.  Thanks for the cheers, Elzingas, as we pulled in.  You knew this was a big deal for us too. :)

Peace for your week.
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4 comments:

Anonymous said...

It is great to hear the brightness in your voices, the girls are looking great. Think of you often.

Anonymous said...

Hi there, I discovered your blog through Sonja Vanderheide's blog (we used to be neighbours!) and wanted to tell you how your words brighten my days. Your girls are beautiful, and I thank you for sharing their beauty and cheerfulness and inspiration with us.

- Andrea Hawksworth

Anonymous said...

So great to hear you were able to go to church all together and all in the same vehicle... w/ room to spare it looks like from the van photos!
Hopefully your apts this week have provided some answers / options in regards to sugar issues.
Thanks for the updates!
~Doreen

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