Monday, January 30, 2012

musing and missing sleep

We're still vertical.

It's been a long couple of days.  Both Ralph and I were saying the other day that bringing Janneke home from the hospital this time feels like bringing a newborn home - the first born, when you had no clue what to do with this flailing infant.

(So, she's not exactly flailing here; maybe it's me whose arms are flailing.)

Janneke is still Janneke.  She has her quirky moments, but she is also dealing with a nasty virus from the hospital, the continuous feeds, and the new medication.  There are many children who function quite well on continuous feeds, but often it is for digestion.  To keep her continuously fed simply to avoid her sugars dropping is a bit intimidating.

She is still not being fed the complete amount of calories that her body needs because she can't seem to tolerate that much right now.  Her feeds are essentially very watered down, to keep her hydrated.  Hopefully, this will change.

In the last few days, I have struggled with frustration and anger, not helped by the fact that we are not sleeping much at night.  Janneke has kept us up for various issues, and sleep deprivation is a prickly companion.

I am frustrated with the reality that my children are undiagnosed -unfamiliar- to specialists.  I am frustrated that this peculiar low-blood-sugar-after-feeds is rare and not normally found in kids Janneke's age.  I am frustrated that Janneke has been prescribed a med that is not normally dispensed in Canada, making me concerned about side effects and confidence in staff who prescribe such a drug. I am frustrated that there is no guarantee that the med will actually work.  I am frustrated that my world seems pretty small right now; my girls' care is number one priority.

The anger comes because I am unable to change things the way I want.  The anger comes because I have to wait this situation out and be patient with doctors who are human like me and don't have all the answers.  The anger comes because the frustration can't resolve itself in a cup of coffee.


Yet...  I read something again today that I wrote last year at this time - a prayer that was inspired by some words I had been reading.  In the times when we are at the end of our strength, remind us that Your strength is infinite.  You are up all night, every night. When we feel as if we cannot handle it and we are brought to our knees, stretch your hands and cover us.  

I need to be covered - like the psalmist writes in Psalm 91, under His wings.  Sometimes the darkness - which is often perceived as unfriendly and lonely - can be the warm comfort of the shadow of His protection, His wing.  Like a grace disguised.

So... we're going one day at a time, trying to appreciate the moments in the day when everyone is content and there is laughter heard.  Looking for grace, disguised in ordinary moments.

Like a "first" snowfall...

I am thankful for the nursing care in our home; having the extra set of hands to reassure me and take over the primary care is a gift.  I am thankful for the good humour we can find in tense moments.  I am thankful for good friends who email and call to check in.  I am thankful for the new friend who came to clean my house today.  I am thankful that it is getting easier to drive the Sprinter (although the snowfall made me wonder how I am supposed to clean the snow off the top?). I am thankful for Rachel's enthusiasm with Emily's piano lesson - and her music therapy which we have resumed with Mendelt.

One day at a time.

Peace for your week.

Thursday, January 26, 2012

home again

out for a stroll with Dad

Janneke is home from the hospital.  Yes, there are feelings of relief in being home, but they are coupled with feelings of trepidation because there is no conclusive diagnosis as to what is causing Janneke's blood sugar level to drop after her feeds.  For now, the doctors are calling it hyperinsulinism.  Apparently, it's something found in new babies or other people post-surgery, yet no one is certain why it is happening in Janneke - and why now.

To create stability and time for all of us to learn more, Janneke is on continuous feed, and we are monitoring her blood sugar levels at home. She is on a rare med called Diazoxide that should regulate the insulin (preventing it from overworking), but we are waiting to see if it is actually effective.  

We are equipped with the right meds should there be another seizure or problem, but we hope that with the continuous feeds and being at home, Janneke's body will rest and respond to the med.  Unfortunately, Janneke picked up a virus at the hospital (cold? flu?), so she is not so cheery right now.

It was encouraging to see the love both Em and Soph had for Janneke this afternoon and evening, and Rachel was all smiles for me when she came home from school.  Being together as family is good.  

Pray for wisdom, for patience, and for peace - so quickly can anxiety warp our perspective, preventing us from seeing His hand.  


Saturday, January 21, 2012

a story for you

Scene 1: Tuesday night, earlier this week

It was a dark and stormy night when two girls and their mom drove into a back parking lot of a local Mercedes dealership.  They were in search of what their dad had seen hours ago on the highway, carried on a flat bed into the city.  The excitement heightened after a phone message confirmed what was already suspected...

Could it be?
Is it?

Yes, it was true.  

Everyone's Van had arrived.

 Scene 2: Saturday morning, today

It was a bright snowy morning when those two girls watched their mom offer a coffee to dear Mr. John Thompson and sign some papers.  Before they knew it, those two girls were riding around in Everyone's Van with their mom, calling out "curb" every time she turned right.

And there was much rejoicing.

The story is far from over.

Next week, we take the van to Northend Mobility for its wheelchair accommodations.  The modifications should take a few days, and then we will be available for tours and travels.  We would love to share the wheel with you.  We would not have this van without you.  On a side note, though, I have quickly realized that we can no longer remain anonymous on the road.

* * *
Meanwhile, back at Mac....

Janneke continues to remain stable, and we were able to cap off her port - taking her off IV fluid.  She is now taking a new, somewhat rare drug that is meant to stabilize her insulin levels, hopefully preventing more low-blood sugar issues (including seizures).  Not everything is understood with why this happened and its cause, but the endocrinologists believe this drug may help.  And then we can all be home again together.  This weekend, Ralph is taking care of her at Mac, and I will resume hospital duties tomorrow afternoon.  We are optimistic she will be home within the week.

Janneke and cousin Aleah watching a video together

There are trying moments when a child is in the hospital for any length of time, but God gives the grace and the strength to rally for each day.  Receiving the van in the midst of this reminds us of His love, His community, and His good humour.

Soli Deo Gloria.


Tuesday, January 17, 2012

photos from Janneke

out and about the halls of Mac...

My big sisters came to visit.  
I think Emily and Sophia look like doctors giving Rachel my updates.

 My uncle Jim came to visit.  We played a touch-finger game.

I felt well enough to go for more than just a stroll today.  Mom asked Child Life to unlock the piano.  I was pretty happy to tickle the ivories.

Thanks for praying for me.  My dad is staying with me tonight, and tomorrow he gets to meet the doctors while my mom gets a good sleep at home and catches up on stuff. (She misses my sisters alot!)  I am getting more and more energetic with each day, and I can hardly wait to move around in my walker again.



So, we are curious as to what Janneke's body is up to.  She is slowly being weaned off the IV dextrose, with her sugar being monitored every two hours.  Within the last 24 hours, there has been no real significant change in her sugar levels.  I appreciate the stability, but this is a different story from what was happening while at the General in St.Catharines just three days ago.

Did Janneke just want to visit Mac?  Why now so stable?  Don't get me wrong; I am thankful for the stability, but I would feel better determining the cause before we take her home.  Endocrinology has assured me that this does happen with low-blood sugar issues with relation to a low growth hormone, and we have a number of tests ahead (not too invasive) that will possibly help with understanding Janneke.

Ralph jokingly said to me, "Sara, there are easier ways of getting away from the house for a few days."  But, we both acknowledge gratitude with having a good team of people helping us at Mac as well as having help with managing things at home.  We continue to be optimistic about this peculiar circumstance.

Yesterday, some of the emotions, sleep deprivation, and frustrations caught up with me, so I made myself go for a long walk.  I was able to explore some parts of the woods (Royal Botannical Gardens) as well as watch a number of deer feed on the Mac university soccer fields.  Something about watching deer and being in the woods reminded me of God's grace - as disguised as it maybe in the circumstances we do not choose, He is always present, always in control. Only by His strength.


Monday, January 16, 2012

At Mac

Yes, we are at McMaster Children's Hospital.  This is a short update because I am using the computer in the Ronald McDonald Room.  Janneke is sleeping better today, and her blood sugars have been stable in the last 24 hours.  We are waiting to connect with endocrinology, and we are hopeful the problem of her sugars will be solved.  (She is still hooked up to IV and her feed pump, so the sugars are stable, but we haven't really solved anything.)  Thanks for your prayers, emails, and notes of encouragement.  I am also thakful for a cell phone that allows me to connect with Ralph, family, friends, the nurse at home (with Rachel) and all the other members of our care team and community! 

We are especially thankful that Emily, Sophia, and Rachel could visit with Janneke.  They were not allowed in the General (St.Catharines), so last night's supper together in her hosptial room was extra special.

Peace for your day.

Saturday, January 14, 2012

update on Janneke

Thank you for your prayers, comments, and notes of support.  We truly appreciate the encouragement.  Janneke remains at our local hospital while waiting for a bed to be available at McMaster Children's Hospital in Hamilton.

She spends most of her time resting, but there are moments when she is alert and ready for her drums. These moments pass quickly as her sugar levels change.

We acknowledge that many children and adults live with seizure disorders, but what is frustrating to us is that very little is understood about Janneke's seizures.  No one is certain why her blood sugars are not stable, and it is particularly intriguing that her sugars drop after she is fed.  To help create some stability, she is on an IV and is fed almost continuously throughout the day.  Being fed slowly all day and into the evening seems to prevent the sugars from dropping dramatically, but it still isn't solving the problem.

We are thankful she is stable, and with the testing of her levels every hour or every two hours, we are able to anticipate a seizure before it actually happens.  We are thankful for the doctors and nurses caring for Janneke at the local hospital, and we are thankful for the help we are receiving from our community to make it possible for one of us to always be with Janneke.

Once she is admitted to Mac, we will consult with our endocrinologist, who specializes in understanding chemical and hormonal imbalances.  We hope our visit to Mac will be short and helpful.

We are thankful for God's provision of strength, good humour, and community support.


Here is a photo of Rachel with a prayer shawl someone made for our family.  How fitting to have received it just last week.  It is soft and brings warmth - physically and emotionally.  Rachel is particularly drawn to its soft appeal.  We are reminded once again of how important prayer is.

Thursday, January 12, 2012

prayers for Janneke

We ask for your prayers with our little Janneke.  She has been in the local hospital since yesterday afternoon due to a seizure.  The last seizure Janneke had was Easter Sunday 2010, and yesterday's seizure was unusual in presentation and length of time.  Sara was home with Janneke at the time, but we had to enlist in the help of paramedics to bring her to the hospital where she could finally stabilize.  We were hopeful last night that all had settled, and we would be able to go home today.  However, she started again with a seizure this morning, so she is remaining in hospital.

We are thankful for the medical care she is receiving.  We had lots of blood drawn to determine the cause of the seizures, and at this point, it looks possibly related to her growth hormones.  Her blood sugars are not stabilizing, which adds to the mystery.  We will wait and see.   Thank you for your support and encouragement.  We are very thankful for the help of Ashley and Christina who have helped us manage Rachel's care - and Em and Soph.  We are tired and bit worried, but we know she is in good hands, and we are optimistic all will be sorted out soon.


Friday, January 6, 2012


Hey, everyone, I am feeling better!

It's been a good week so far. Everyone is feeling better, and we have done a few things outside the home.  Janneke continues to explore surfaces in our home and has recently fit into Rachel's old jeans, making her seem so much older.  Funny how denim adds the years.

We had another successful portacath flush, and we also did some routine bloodwork.  We hear stories about portacaths getting blocked or how quickly a clot can form in the vein, but we have had no trouble with the girls'.  I am so thankful we could work out for the bloodwork to be drawn in the home instead of the hospital.

* * *

We had a chance to go visiting with Emily and Sophia on Thursday.  We have a long list of family and friends that we want to see, but for Thursday, it was Aunt Alida and the Lammers family.  It was great to step away from the routine at home, but we miss being with all four girls.  Rachel and Janneke spent the first half of their day with nurse Roxanne, and then Ashley kept them company until we returned.  Everyone had a good day.

Realistically, it is very difficult to take our whole family visiting.  It's not just the transportation, but it is also all the supplies we have to pack, the accessibility of the home we are visiting, and, in the end, we are too busy with the girls' care plans to enjoy the company.  

We wanted to see my Oma DeJonge, but her retirement place is in "lockdown" because of a flu virus.  Oma can't even leave her room to go into the hall or the common areas.  She has to stay in her room, and her meals are brought to her.  Needless to say, visitors are not permitted. So, we called her on our cell phone and waved to her through the window.  Can you see the phone cord and her hand, Aunt Linda?

Secretly, the reason we traveled towards southern Ontario's snowbelt was for... well, snow.  We have not seen snow yet in St. Catharines - and as great as that is for traveling, our kids have missed the winter fun.  Nothing like a set of wooden stairs with some snow to function as a backyard toboggan hill.

* * *

Today, it was actually quite warm out for January, so our PSW (personal support worker) and I took the girls for a walk to Lake Ontario.  While we were gone, I opened the windows in our house to chase away any existing germs.  Both Rachel and Janneke were all smiles for the walk; they love being outside.  Emily and Sophia collected photos and nature items for their art projects.  I love their creativity!

This week, I've been thinking about the idea of resolutions.  When I google the meaning of resolution, the word determination shows up.

These past three weeks haven't really made me feel determined or motivated.  Once in a while, that's what happens - life catches up with me.  And I feel unmotivated and, well, not really determined or resolved to do more than necessary.  I find these weeks filled with reflections on the past six of fifteen years as parents and as a family.  It's as though I need to grieve every so often.

I know this bit of time passes, and as much as I wish I could ignore the emotions and feelings that come with this life, the more I acknowledge how I feel, the easier it is to deal with the day and move onward.  Some of Sarah McLachlan's words come to mind:

if I feel a tear, I won't cage it, 
I won't fear love.
if I feel a rage, I won't deny it  
I won't fear love.

I also have thought about Simeon's words to Mary and Joseph when they brought the infant Jesus to the temple.  Most people get excited when they see a new baby and fill the parents' ears with all kinds of lovely things.  When Simeon saw the Christ, he Knew the significance of that new baby. After sharing his joy, his last words to Mary were "and a sword will pierce your heart."

We weren't there to know all of Mary's story, but I am guessing her life was not easy.  Yet, Christ came for that very fact - to tell us that as difficult as this life might be, there is a promise of hope.  Our sorrows will not consume us, and grace will be given daily.

So, if I really try to resolve anything for the year, it's to not give up when there's not much to give.  I resolve to lean on Him when I am no longer able to handle my day.  I resolve to find the joy in each day and allow that joy to supersede whatever frustration or sadness is in my heart.

I can do all things through Him who gives me Strength.