Riddles

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.   

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.     

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.

Living on the Edge

    Last evening I had a couple people at church ask how Jacob's doing.  Well, that question is becoming increasingly difficult to answer, considering what's transpiring with our little man.   Overall he is content, which we are extremely thankful for.  His apnea spells reappeared last week, so that brings along much  concern.  It feels like we always are living on the edge - waiting for the last breath.  He can be so content, then suddenly he won't breathe.  Last week Thursday he had 3 apnea spells, with 2 of them being quite severe.  It's so tough to see him completely lifeless.  Typically he picks up again quickly, but once it took a while for his breathing to become normal (for him!) 

    His feeding is still a concern, as he's not tolerating a proper amount of calories.   He's going to continue to lose weight at this rate, which took so long for him to put on.

   All things considering, we've been blessed to see many many smiles and giggles lately :)  How a smile or a giggle  can cheer our day! 

How he loved his hat!! 

We were even able to capture part of his happy time on video :)

Lengthy EEG Stay

Well, Monday we arrived at the hospital for Jacob to undergo a 48 hour video EEG.  They place the electrodes on his head like a normal EEG, but this time a video captures every movement.  Also, at night he's been monitored for his oxygen.  After 48 hours, we are no wiser :(  He hasn't had one apnea spell yet.  They've now reduced his one seizure med hoping that he'll show us something.  I'm not hopeful.  It reminds me of a vehicle that is having issues, you bring it to the mechanic and it works perfectly! 

Jacob seems to enjoy all the attention because he's been giving the nurses plenty of smiles and giggles.  At least there is something positive going on.  Paul or I are called to be with Jacob all day and night, so it makes for an extremely tiring stay!  I long to be at home.  We originally told our kids they could come home on Wednesday after school, but they had the news that that wouldn't be the case.  That hurts the mother heart, even though I know they are very well cared for!! 

Hopefully something is revealed tonight, so we can head home tomorrow!!! 

Smiles, Smiles and more Smiles

Last October we were privileged to get a few smiles one afternoon, but overall, it's been A LONG time since we've seen consistent smiles...until now.   A couple weeks ago we reduced his calories in his formula and it seemed to make a world of difference for his overall demeanour.  He's happy much more often, more settled and giving us plenty of smiles and giggles.   Oh what joy that brings to this house hold!!  To hear giggles instead of crying.  It's been very uplifting for everyone here!!

 

Even though this picture is blurry, I can hear his little squeal when I look at that face :)

Even though it's GREAT that we are seeing all these smiles, it comes along with a large concern.  With the reduced calories he can't sustain his weight.  With no sustaining weight gain, his organs are put under stress, which leads to even more complications.  So, we are going to have to make a decision in the coming week or so what direction we want to travel.  Increase his calories so he'll at least maintain his weight, but have him much more irritable (and a host of other issues,) or do we allow him to be happy with reduced calories?

It is such a blessing to have God's word applied personally in a sweet way.  Several weeks ago in church we sang several verses from Psalter 383.  While I was singing verse 2, my thoughts wondered over to Jacob's life.  It brought so much comfort that day and many times since.  His life is in God's perfect plan.  Even in these trials and tough decisions, God is present, a very present help!! 

Psalter 383:2

Ere into being I was brought,

Thy eye did see, and in Thy thought

My life in all its perfect plan

Was ordered ere my days began.

Some Thoughts

    It's been a while, once again, since I've blogged.  It has been a time of so many thoughts and experiences that it's hard to find the words.  I'll try to accurately write what's been going on.

     First off, Jacob's EEG results have come back with somewhat negative results.  His seizures are occurring in a part of his brain which have never seized before.  According to our paediatrician, this makes sense for his condition, but it's not a positive one.  We are once again faced with signs of regression.  Where we go from here is an unknown.  We are to meet with the neurologist soon to discuss our options.  One difficult point regarding Jacob's seizure activity  is that a typical EEG won't pick up any seizure activity from the brain stem.   So, many of Jacob's abnormalities could be seizures but we have no way of concretely knowing.  It takes a surgery to place a prod by the brain stem to read brain stem seizures.  Considering surgery is basically not in Jacob's dictionary, this is not an avenue we are willing to travel.  Once again we are called to live a life of uncertainty, from a medical stand point.  It's a good thing we know that God has all things in His control and that nothing is hid from Him.  What He wants us to know, we will know. 

      Jacob's had an increase in apnea (not breathing) spells.  Yesterday alone he had 6.  This comes as an enormous concern.  They last for up to a minute, with his oxygen saturation levels plummeting to an extreme low!  These spells also make sense considering the part of his brain which is so compromised, regulates breathing.  If only there was something we could do about it.

      His concentration of feeds have been greatly reduced to alleviate constant vomiting and retching.  So far so good, but...his body needs more calories than we're currently giving him, so it feels like we are truly between a rock and a hard place.   The plan is to slowly increase his feeds to find out when the intolerance kicks in.  This step comes as a painful one because his smiles have returned.  We believe he feels much better with a lower calorie intake.  Time will only tell.

     Yesterday marked Jacob's one year mark since his last pneumonia.  Last year we had said our good-byes to him, we were watching him slip away from our grip, yet, one year later we are still able to love and care for him.  What a blessing!  What a gracious and merciful God, to supply us far beyond what we ever thought possible.  

    It's also been a tough winter with so many night nurses cancelling due to weather.  This makes for long tiring nights and exhausting days.  We just get our feet under us and then we get a call that the nurse isn't coming.  Some nights we've been thankful she didn't come because driving was truly treacherous.  It's sure been a long, cold, snowy winter! 

The relationship these two boys have, truly melts my heart.  This picture was taken before Jacob's smiles returned, but you can see how content and happy he is with his brother right at his side.  Caleb goes out of his way to give Jacob toys, especially if Jacob's sitting in his chair.  Caleb wants Jacob to 'feel' things.  That's something we've never taught Caleb, it's just in him :)

This may just look like a sleeping Jacob, but there's more to this picture.  We've been blessed to have a couple of fantastic nurses in Jacob's care now.  The one will often go the extra mile (or two.)  This particular morning, she left and I discovered Jacob was hugging one of his teddies.  To most people that token of love would mean something, but for us, it means tons.  Here's why...every different position Jacob's in, benefits his muscles/bones.  Even a slightly different position gets his muscles working in a different way.  The saying goes, 'it's the little things that count.'  It's so true!!