Saturday, 25 August 2012

'God At Work'

      'God At Work' is the title which was over our devotions a couple days ago.  In the morning, I'm reading through "Bridge to Esther" with the kids, from Rev. Vergunst.  It is geared for children, but as adults, there is something to glean every day.  The meditations are easy to understand and very practical.   
      We were studying about Esther when the decree went out to gather the maidens (Esther 2:8-9.)  Suggested further reading was Job 1.  It is a wonderful comparison. 
      On Thursday morning I felt like Rev. Vergunst wrote this meditation just for our little family.  Here is a little excerpt, 'I don't know what it happening in your life right now.  Maybe very sad things have happened or are happening as your read this...  But I do know that God is at work in everything that is happening or has happened to you.  We don't always know why God does what He does.  Esther had no idea why she was snatched from her home to become the queen of Persia.  Think of others in the bible: maybe Joseph was puzzled why God allowed him to be sold and later thrown in prison; David couldn't figure out why God was allowing Saul to try to kill him. 
       Later, Esther, Joseph and David could look back and see that it wasn't a puzzle after all.  It was a completely thought out and wise plan, which God Himself was working out step by step. 

       God doesn't ask us to make His plans better or suggest changes.  No; instead, our Creator God calls us to trust Him, even in the darkest events.  That's difficult, but not impossible!

       Faith is God's gift, and when God gives us faith, we can trust Him even in the middle of a storm.  Our extra reading this morning is from Job.  As you read what happened to him in one day, notice how beautifully Job ended that day.  He knew that God was at work.  He didn't know why God was doing it.  In some ways, he never found out, but he learned to trust Him.  Maybe that's what God is teaching you too!'

       Many times the last while I've asked 'why.'  I know there is a reason for everything, but at times it is difficult to see the answers.  I've wondered why we had to lose 3 nurses (2 absolutely fantastic nurses) in one week:(  I've wondered why we had to go through a large medication mistake.  I've wondered why Jacob has 'stuff' in his lungs almost every day, and showing no signs of improvement.  I've wondered if another medication is an answer.  I've wondered how his brain his progressing/regressing.  Through it all, we are called to have faith and trust God in ALL things.  May God give us peace and contentment day by day!

Tuesday, 21 August 2012


      During breakfast this morning I asked the girls if either of them wanted to come along to the hospital for Jacob's EEG.  They asked what was involved.  I explained that there is no blood, it is a painless procedure (well maybe except getting his head scrubbed to put every electrode on.) I then explained what they do to actually perform the test.  I didn't get very far when Breanne interrupted and said, 'I don't want to go.'  I laughed to myself.  She's so like me!  It's clearly out of her comfort zone.  Sheryl thought it sounded interesting, so she wanted to come.  I love having company, and will miss it, once they are gone to school:(  Sheryl was thrilled to push her brother through the hospital.  The entire time the technician was working with Jacob, Sheryl was fascinated. 
     An electroencephalogram (EEG) is a test to measure the electrical activity of the brain.  Jacob has had several of these since birth.  Every time they've done the test, the findings have indicated irregular brain activity.  There have been no seizures, but with so much irregular activity, it wouldn't be surprising if he had (or has) seizures. 

       Considering Jacob has had a few new mouth movements (which can be seizures,) and some  unstable moments, Dr Kerr decided it would be good to have another EEG.  Jacob did so well!! Actually, he loved it.  He was smiling and cooing while the technician was marking his head and placing the electrodes on his head.  Once she wrapped his head, he settled into a peaceful sleep.  I think a hat would be a good investment - or at least a roll of gauze:)
Jacob with all 24 electrodes on his head.

Once the electrodes were on and in place, they wrapped his head, to keep them from slipping all over. 
He looked so humorous.  He didn't mind at all! 

GOOEY!!  The red is marker that they marked his head with, so the electrodes would all be equally spaced apart.
After a thorough scrubbing, most of the marker and goop was out of his hair. 

      The procedure took about 45 - 60 minutes.   We were leaving the EEG room, when I thought it would be interesting to see who was working on the paediatrics 6th floor.  It was neat to be able to talk with the nurses, when Jacob was not at a low point.  The nurses love to see the children, other than during their hospital admissions. 

      On the way home, I was filled with thankfulness considering how well Jacob cooperated.  It will take about 1 week to get the results - I'm curious!!   

Thursday, 16 August 2012

Dr.'s Appointment

     When things are going rough, it's easier to focus on the negatives rather than the positives.  Today, even though we received very little encouraging results, we must look for the positives.  We have a paediatrician in St Thomas, who we feel very blessed to have.  Marije (our respite worker) came along to St Thomas, just in case Jacob needed help while I was driving.  Thankfully he calmed down both times several minutes into our trip.  Marije was very impressed with Dr Kerr!  Paul and I have always felt like God provided a paediatrician who understands Jacob, us, and our beliefs.  He is church going, and brings out things from the bible on a regular basis.  He has a lot of common sense, and takes what's in Jacob's best interest first.   We have much to be thankful for!!
     With Jacob's health, it's difficult to pinpoint exactly what's happening on the inside.  Several things were discussed...  first, his increased irritability.  In 2 1/2 days, he slept 6 hours (yes, that's day and night.)  Last night he finally slept ok when he slept 6 hours.  That's still not enough.  He didn't fall asleep today until 8:00pm.  He can't keep this up!! Even when he's awake, he's very restless.  So, the result... increase one medication he is already on.  Even though we've always been extremely cautious with any meds, we truly don't know what else to do.  I possibly can't hold him for 16 hours every day.
     One medication we could add to his regime acts as a sedative.  This is a scary step.  I'm not sure we are ready for that step yet.  We'll see what happens with the one medication being increased.  We need wisdom from above. 
     Jacob has been doing a lot of mouth/tongue movements, which is a newer development.  Dr Kerr is wondering if they are seizure related.  He has ordered another EEG, to monitor Jacob's brain activity.

     Last Saturday evening, Jacob had a time when he was asleep that his respiration's were very low (about 5 per minute), his colour was very pale, and I could hardly feel his pulse.  This lasted for about 20 minutes.  We were at a family gathering, so we kept it quiet that we were so concerned.  Paul was holding him, and was keeping a close eye on him (with my eyes and my mom's, not leaving him for long either.)  After the 20 minutes his coloured improved and his respirations increased.  He didn't wake up for hours though, plus he slept all night!!  Very concerning.  Dr Kerr was wondering if that was also something to do with a seizure.  It wouldn't be a surprise, seeing that he has constant irregular brain activity.  So far though, every EEG he's had, has just shown the irregular activity, but no seizures.  The doctors office was going to put it as a priority to have the test done.

    Also, the first part of the appointment is just a regular check - weight, length and head circumference.  Well, regarding his weight, he was up 200 grams, which the doctor was happy with.  That is over about 2 - 2 1/2 months.  The gain is small, but it's not a loss. 

      He is truly keeping up with his dutch genes to be tall, because he is still maxing the height growth chart.  That actually means he's getting thinner:( 

     One of the more important parts of the visit is his head circumference.  It doesn't tell us everything, but it helps us understand things somewhat better.   His head circumference didn't get any bigger since January.  That might explain why things are where they are -  his brain isn't growing.  Hopefully the brain cells aren't dying off!  Tough thoughts!!

     I wish I could make his brain better!!  I wish I could take away his pain and discomforts!  I wish we could all understand him clearly.  I wish he didn't have to be on half a pharmacy worth of medications.  Our road with Jacob just isn't going to be that way.  It goes totally against our humanly desires, but it's in God's perfect plan.  Jacob is so unwell, yet, is not tempted to sin as we are.  He is spared from so many temptations.  May God provide peace to Jacob's soul.  Even though on earth, he has so many discomforts and afflictions, God can give Jacob a soul that is at peace with his maker.  May that be our constant hope and light during these dark days.  

Monday, 13 August 2012


     On Saturday August 4th we were privileged to celebrate my parents 40th anniversary. It truly is a great blessing - 40 healthy years together. It was nice to be able to celebrate the occasion with family. 

     We were a little concerned for Jacob's sake, because the dinner was to be outdoors and it was extremely warm and humid - not a good combo for one who suffers from lung issues.  It went better than we expected.  Jacob was very content the whole afternoon and evening.  He even fell asleep for quite a while - something unusual for him at that time of day.  The best part was when he woke up, he was full of smiles and coos:)  That brought a smile on everyones face!  We almost wondered if he was aware of all the attention.  Whatever it was, those are moments we cherish!!!    

Breanne spending quality time her little brother.
Jacob full of smiles after a long nap.

My dear Dad and Mom with Jacob

     We were able to enjoy some time away with Paul's family last week. We dropped Jacob off at Pratton on Sunday. That enabled us to go up to God's house as a family in the afternoon and enjoy a quiet Sunday evening. 

    Bright and early Monday we left for Rice Lake.  This came with such mixed emotions.  Leaving behind Jacob, being 3 1/2 hours away (with clear traffic through Toronto.)  We left knowing that God has all things in His control.   The children were reminded very often that they were not to get their hopes up, because if Jacob ends up sick, we won't be going (which is exactly what happened last year!)  It was hard for them not to get excited about holidays, but yet, we wanted them to keep it in the back of their minds.  When we woke them up at 5:00 Monday morning, they were thrilled, and ready to go in minutes (if only school had the same effect.)
     We had a great week with the family.   It was neat to sit back and watch all the kids playing and interacting with each other.  Cousins are great!!

      Jacob did quite well for a few days, and average the other days.  There were no major concerns, so we could truly enjoy our week.   We were glad to be back, and it was wonderful to see our little man again!  They found out one thing at Pratton...that he loves the swing.   I might just have to keep my eyes open for one.

     Today it was high time to get in touch with the palliative care nurse and the enteral feeding nurse.  They share an office (at the London Hospital), and they were both at their desks.  It's rare for one to be at their desk, let alone both.  We had a conference call which usually is quite helpful - more heads together, the better.  We are grasping at straws.  Jacob continues to bring up lots of mucous and bile, which is a concern.  They have no clue why he is doing this.  He is maintaining his weight, but not gaining.  His brain must be sending out incorrect signals:(  Jacob has already had tests to figure if his digestion into and out of his stomach is functioning, and it works as to be expected.  So why we are having all these side effects, is quite a mystery.  We have a paediatrician appointment on Thursday, so we'll see what his thoughts are.  In the meantime, we have a boy who brings up phlegm and bile MANY times every day- that would have to hurt!!  Poor boy! 

Saturday, 4 August 2012


      This world is so full of sorrow!  We have all experienced sorrow to some degree. 

      Sorrow has encompassed our life in the past couple weeks, but especially today.  Today has been heart wrenching!  Full of sorrow.  Full of amazement.  Full of thankfulness.  Full of mercy.

       This morning I attended a funeral of a dear young couple from our church who were called to bring their 12 day old infant son to the grave.  My heart was grieving with the mourning couple and their families.  We never thought that there would be a child in our church family buried before Jacob.  God's ways are higher than our ways!

        In our thoughts, we've been where this couple have been.
  • We've been plunged into mourning.
  • We've grieved with our families.
  • We've been in the receiving line at the funeral home standing beside our son lying in a casket. 
  • We've been ushered up to the front of the church where Pastor Kelderman would preach to our little family, our extended families, friends and congregation. 
  • We've been called to bring our dear son to his final resting spot. 
  • We've been rejoicing, thinking that our dear son would be honouring and glorifying his maker in perfection, yet crushed that we would never be able to hold him, never to speak to him, never to care for him again.    
  • We've been rejoicing that he would forever be taken out of all his trials, discomforts and pains.
Yet, we have been graciously spared from having to physically experience these things.  Jacob has been spared for 16 months in God's providence.  Even though his heart doesn't beat consistently like it should,  even though he experiences breathing difficulties daily, even though his brain sends incorrect signals many times a day, causing various effects, even though he doesn't gain weight like he should, we are experiencing God's compassion.  Daily compassion!  Daily tender mercies!

Pastor Kelderman preached on Lamentations 3 :21-25.  This I recall to mind, therefore have I hope.  It is of the LORD's mercies that we are not consumed, because his compassions fail not.  They are new every morning: great is thy faithfulness.  The LORD is my portion, saith my soul; therefore will I hope in him.  The LORD is good unto them that wait for him, to the soul that seeketh him.

Indeed His mercies are new every morning.  That we may have the eyes to see His mercies every day. 

Thursday, 2 August 2012

A Chosen Few

This was sent to us by a dear friend recently.  I enjoyed it a lot and thought to pass it on.

A Chosen Few

I've heard there are a special few chosen in this world
To be mom’s and daddy’s of special boys and girls.
There's nothing you can change, no there's nothing you can do,
When God looks down and He chooses you.

At first I questioned why God gave him to me;
Could I raise a child with a disability?
How do I hold him? and How will I care?
Will it ever go away or always be there?

They said the days ahead were going to be hard—
Boys like him, in this life, don't get very far,
They said he may not walk or run, and he may not understand,
He'll always be a little boy, but never be a man.

There are certain things a mother knows on how to raise a child;
When to be stern, and when to be mild,
How to kiss a hurt away, or how to kiss good-night,
How to say "I love you", when the time is right.

I think its awful sad, when some don't take what they have,
They think a special child, is having something bad,
But I praise the Lord for the son He gave to me,
I place each day in His hands, whatever it may be.

Yes, I've heard there are a special few chosen in this world,
To be mom’s and daddy’s of special boys and girls.
There's nothing you would change, no there's nothing you would do,
When God looks down and He blesses you.
When God looks down and He blesses you.
Words & Music by Shelly Uphole