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.

Thursday, February 16, 2012

it's been awhile

Things have been a bit topsy turvy lately.  

It seems Janneke is not the only daughter with blood sugar issues.  To make a long story short, we have learned that Rachel is also displaying unstable sugar levels.

Recently, we decided to check Rachel's sugar levels specific to the 45 minute mark after her feed.  Sure enough, Rachel's sugar readings sat lower than some of Janneke's original blood sugar readings when she was having the seizures.  

So, why wasn't Rachel having a seizure in that moment? Or was she?  We've often thought her twitching, lethargy, and other odd movements were typical for Rachel, part of just who Rachel is.  But, now we are wondering if she has been dealing with unstable blood sugar levels for a long time.

After meeting with endocrinology to talk about Janneke - and now Rachel, it was agreed that we keep both girls on continuous feeds (24 hours) for an indefinite time and monitor their sugar levels closely to determine when their sugars dip.

To clarify, the girls are not diabetic.  This is a different scenario.  The blood sugars seem to drop after they are finished with a feed (instead before being fed), and with the continuous feed, we can hopefully create a safe environment without risk of hypoglycemia

One of the possible causes for the girls' sugars dropping is a medication currently prescribed for digestive issues.  We have stopped giving that med, and now we wait.

Time will tell.

So, for now, our days are filled with changing the feeds and cleaning the pump every 3.5 hours (feels like a newborn baby routine again), monitoring the girls' sugar levels throughout the day and evening, and trying to find a new - hopefully temporary- normal routine.  Rachel has not been to school much, and we know she is missing that part of her day.  Janneke never seems to show much concern with finger pokes (testing blood sugars), but Rachel flinches - and she shows the hurt in her eyes.  Poor kid.

On the flip side, Janneke is showing more of her humourous side again.  In this photo, she is busy at work.  We alternate by referring to this as her office desk or her disc jockey table - spinning the news or spinning the tunes.

The backpack pump proved to be more frustrating than helpful, so we opted for a much riskier but still workable idea of snagging the pump-on-the-pole to her walker or chair.  Kids, don't try this at home.

Somehow, we want to also keep things light for Emily and Sophia.  They know when we are tense and worried about their sisters', and they often respond with quiet compliance.  It was reassuring to see them goofy and loud outside the other day, as we attempted to build a hill to sled over the Christmas tree we neglected to bring to the curb.  I knew that old tree would come in handy. (Yep, that's the base poking out of the pile.  I forgot to pull that off too.)

As for the girls' health, we wait and watch some more.

* * *

There is a delicate relationship with professional authority (doctors and medical staff) and parental expertise.  For the doctor, the child is their patient; for the parent, the child is their life.  And sometimes, emotions and worries can make things awkward.

I can't decide who to worry more about -Janneke or Rachel.  I spend my day trying to balance out the worry with other things.  Thankfully, we have nursing care for part of the day to allow for some breathing room.  When we returned from endocrinology the other day, I said to Ralph that I once again sensed the contrast between my worry and concern as a parent and the doctor's clinical observations and recommendations.  

Yet, faith means trusting when you don't have the answers -and you feel more frustrated than soothed by the day's events.  Faith, however small it might feel right now, means we can have the courage to live without going frantic from worry.  Faith means you have more questions than answers but you still believe in God's promise.  We have hope in His faithfulness. 

We will try to be patient in this new phase.  We are very thankful for the medical staff at the hospital and for the help in our home - VON, our PSW and respite (Ashley and Christina).  Hopefully, the simplest theory is proven correct.  Omitting that drug would be the least invasive of a resolution for the girls'.  If that theory is not correct, we may have to look at more aggressive testing....  and that doesn't excite anyone. 

We move into tomorrow, leaning on His strength.

Peace for your week,

* * *
Life with the new (Everybody's) van

The wheels on the bus go round and round...

Nephew Caleb was very curious and wanted a tour.  "Uncle Ralph, what kind of gas does it take?"  "What is this lid for?"  "Aunt Sara, I didn't think your van would be THAT big!"  "No, I don't want to drive the van today."

Sunday, February 5, 2012

still waiting and wondering

We're calling her Dora - with her backpack, she can explore and be fed at the same time.

Truthfully, she is not well yet.  It was a long week, ending with another visit to Mac on Friday.  From 1 to 5:30 that afternoon, I worked with the endocrine staff to understand some of her unusual symptoms - petechial rash and low platelets.  My mom-sensors tell me they are most likely side effects of the Diazoxide, so they consented to a lower dose.  The staff considered admitting her again, but I was relieved to take her home again that evening.

Honestly, I don't know if I want her on the med at all, and seeing side effects makes me even less confident.  But, we don't have much else to control her insulin and sugar levels at this point, so the med stays.  Hopefully a lower dosage will mean she can return to her old self again.

It was reassuring to talk things through with my sister Jess who is only too aware of blood work results and platelet levels because of Caleb's journey with leukemia.  Perhaps that's another example of disguised grace - how her journey can give comfort to me in mine.

As it is for now, Janneke naps a lot.  She has times when she is awake and around the house, but I am surprised by how quickly she tires.  We will wait and see how this week goes.

I find it interesting the parallel between the weather this winter and my perspective - how quickly both change overnight.  

One day it is snowing and cold, and the next, the girls are mucking in the mud....


I suppose it's about finding balance, in spite of the circumstance.  

On a different note, the wheelchair lift and parts are now installed in the van (Everyone's Van!), and we have practiced putting the chairs in.  The first time we tried the lift at home, we parked the van in the driveway (as usual), but when we operated the lift, it popped out into the flowerbed, narrowly missing our light post.  

I think when we make our home more accessible this spring, I'm going to ask the guys to paint lines on our driveway - or even words like PARK HERE, SARA, so I don't end up wheeling the girls through our hostas.  

Thanks again for your encouragement and support - and for the meals (what a treat!).  Funny how other people can get my kids to eat vegetables with no difficulty.  I've decided that future meals will be entitled "Mrs. Vlaar's" or "Mrs. Hoff's", etc, to prevent any discussion over eating and picking.  

Peace for your week.

Oh... by the way, we posted a link on Facebook to this thought-provoking article written by a father whose child lives with Down Syndrome.  It is a interesting article - one worth reading and worth discussing.  Click here.