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,
spot

* * *
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."



3 comments:

Anonymous said...

We're praying for you. Sure wish I had some inspired words.
~Elly

Anonymous said...

Hi Everyone;

You sound tired, but optimistic. You are truley a family to be used as an example of what life is like with not 1 but 2 challenged children, as well as your others who are as devoted as Mom and Dad.
You are all to be congratulated on all you do and share. Keep up the smiles and wonderful work for your family.

Kelli TenHaken said...

My heart goes out to you guys. I admire your attitude and I can see God working in your hearts during another tough time.