Friday, 25 April 2014


Life is full of riddles.  Some we'll figure out, some we won't.  Life with a special needs child is full of many many riddles.  Jacob's life is no exception to that reality!  For the past 2+ weeks, we've been trying to figure out what happened to his leg(s).  Seeing the x-rays came back fine, we knew his legs/hips weren't broken :)  The doctors and nurses couldn't figure it out.  After days of close observation and still no clear direction, I presumed this was one riddle that was left to be unanswered.  Until...the therapists arrive at our doorstep to 'feel' what was going on yesterday.  Our physiotherapist is amazing with her hands!!  She really feels that nothing is wrong with his legs, but something happened (or is happening) in his back.  He is reacting to the pain/discomfort by bringing up his one leg while holding the other one stiff!  He can hold it so stiff, it's extremely difficult to move it! The strength of a three year old amazes me!!  Mary Ellen showed us how to do some gentle exercises with him, to see if he can relax his legs/back more.  The therapists are scheduled to come back the beginning of next week, so it'll be interesting what happens before then.  Her theory totally makes sense to us.  Maybe, just maybe we'll have the answer.

Life with Jacob as a whole though has been good lately.  The weather has been amazing, so he's been spending quite a bit of time outside :)  He LOVES it!!  The only part he complains about is coming back inside.  What a blessing though that his brain registers the difference and he's able to express it correctly!!  That's something we don't take for granted.   

Thursday, 10 April 2014

Another Trek to Emerge

Yesterday sure brought trials our way.  Suddenly in the afternoon Jacob started crying/screaming.  There was nothing obvious what caused him to be so irate.  After close observation, I decided to take him to emerge because he seemed to be favouring his right leg.  It makes things so difficult when he can't indicate what's hurting him.  At Emerge, they took x-rays of his pelvis and legs, but all came back with a positive report.  Bizarre.  It's the life we have with Jacob.  We often face the reality of the unknown. 

When he's in pain, like yesterday, it truly breaks our hearts to see him suffer to such an extreme.  The poor boy.
His evening and night were OK, but he sure still isn't himself yet.  He's off to respite this afternoon.  I don't want him gone when he's not himself, but on the other hand, it's great to have such skilled eyes on him.  The doctor and nurses there are extremely knowledgeable with these kiddos.

We covet your prayers as we continue down this path, which God has so perfectly laid out for us.     

Monday, 7 April 2014

Year in Review

Jacob turned an amazing 3 years on March 30.  What a milestone, or should I say, what a miracle?!   It's been a year of ups and downs, questions and concerns and much prayer.  Yet, we can stand back and be thankful at an overall good year.  In that past year, he has not encountered one pneumonia - the medical team (and the rest of us) are amazed at that fact alone.

Here are some pictures to summarize our last year :) 
March 30, 2013 Jacob's 2nd Birthday Gathering :)  Content in the arms of Marije!!
The love these 2 share is beyond special.  So thankful to have a spunky boy who loves his 'baby' brother!  Caleb looks at Jacob as a baby, not one who has a disease and a host of problems.

One of the precious poses from the photo shoot from Simply Said Photography.

Another pose

Exploring belly time and enjoying it so much, he fell asleep :)  Little did we know that in the months to come, he would adapt so well to sleeping on his sides and stomach that his sleeping would greatly improve in the months ahead.

Sitting like a big boy :) 

Our first 'slight smiles' in many months!
Enjoying his snoezelen room at home.
Celebrating the generosity of PC Children's Charity!

There it is!!  Finally, the smiles reappeared!!! - October

Sheryl getting some cuddles in.  Enthusiasm sums her up :)
Thinking hard about his play.  He's not so sure. 

Enjoying massage time with Marije.  Oh, those smiles!!  We savor every one!!

Time with Oma is always good!  He was happy to share his smiles with her too.  By this point, we were seeing them regularly, in response!
The broken leg :(

Even though this is one of the cutest casts out there, he despised it.  It only lasted one week.

He would sport this cast/splint for the next 6 weeks.  At least he didn't mind it!
December - this is the night that Jacob started his apnea spells in earnest.  What an unsettled road since!!

I had to put this one in.  This shows a real picture of our kids.  They aren't always sweet - they wanted a picture with the four of them, but little did I know they didn't mean a 'nice' picture.  It's now wonder Jacob can sleep through so much commotion!!

EEG testing and loving it!  This is one of my all time favourites.  Even though he's wearing hospital clothes and the background is nothing fancy, he is smiling from his heart - and that's what matters.

Love his expression here.  He's not sure about the electrodes going back on. 

Breanne has really grown in the last year regarding Jacob's care.  What an enormous blessing it is for us to have her.  She loves to care for her brother and so willingly does anything we need help with.