Continuing On

Well it's been a while since I've wrote my thoughts down here.  It's been several weeks of studying, learning and observing.  As a couple, we are trying to prepare ourselves for what lies ahead.  We have learned that we can never prepare ourselves emotionally for the loss which is inevitable.  Yet, we feel we are to be prepared (as much as possible) to deal with our children as they will also be called to carry a heavy weight on their shoulders.  The girls have noticed things lately with Jacob and thankfully they have been understanding and patient, yet, sometimes quiet, sometimes questioning and sometimes confused.  We follow in their thoughts.  It's mixed emotions and thoughts continually.  

It's not that we feel that we are losing our little guy now or we will in the next week (yet, it remains so uncertain what a week from now will bring.)  It's just that we've seen more negatives in the last week which always brings with it a boat load of concern.  

Jacob is having more unknown fever spikes accompanied with low oxygen saturation and extremely high heart rate.  After 5 or so hours, he's back to being the normal Jacob.  Bizarre.  
Yesterday he had a lengthy seizure, which is the first one we've seen of that nature since last November.   Again, the reason why he is experiencing these things remain unclear.   

His irritability is through the roof lately.  Wow!!  I'm really hoping that it's teething related, but I’m unsure at this point. 

A little while ago I was talking with someone from our team and this is exactly what she said about our situation, considering Jacob's degenerative brain condition, "The most painful piece is living the paradox of hoping for improvement or at least some stability for improved quality of life with the dread of knowing that each new unusual finding is likely related to his degenerative disease."  It sums up what we live with each and every day.  

In amongst all discouragements there are many encouragements along the way.  We have the comfort of knowing that we are upheld on the wings of prayer on a daily basis.  That's powerful!  What a blessing. 

We have been blessed with a GREAT nursing team!  They are an amazing group of nurses!  We see the hand of God in this too.  After a lengthy rough time, we are equipped with nurses who are caring, compassionate and knowledgeable. 

We also know that God makes no mistakes - Jacob was placed on our path at the perfect time and for a purpose.  This thought is echoed by Dr. Beeke in his book Portraits of Faith, 'I say to you without any hesitation that God has never made one mistake with you in your entire life.  He has never given you one cross too many or one cross too few.  He has never given you a cross that did not profit you.  What you need is daily, genuine, submissive faith: faith to say amen to God's ways, faith to receive what he in his inscrutable wisdom deems fitting to put upon you. You need faith to trust him with every affliction.'    Oh, so much to learn, over and over again!!  Yet, what a pleading ground with an Almighty God! 

The Portraits of Faith has been an enormous comfort as we walk down this path, with no map to guide us.  We are simply called to lean hard on God for every step. 

Homeward Bound

Two years ago today was the day we brought our little man home for the first time.  Homeward bound!  A day  full of mixed emotions.  A day I was thrilled to leave the hospital, yet feeling the hospital as a source of security.  If anything went wrong, nurses and doctors were only a few short steps away.  Not at home though.  We were on our own.  

Amazingly, we can still cherish Jacob's love that he gives us every day.  

We love Jacob more with each passing day.  

Simply Said Photography on behalf of Helping Hearts captured some super special moments.  As I looked through the pictures, some brought tears, some brought smiles, and some brought full laughter.  Jacob receives a 10 out of 10 for expressions!!  Here are a few of our favourites!!  We have been truly blessed! 

Thanks Melissa for such a great job!    

 

 

 

 

 

He's Back

Yesterday I picked up Jacob from the respite home.  Upon my arrival there, I found him in the arms of Holly, an amazingly spunky nurse.  She has a passion for special needs kids that is simply beautiful.  I expected to find Jacob the same way I left him on Monday.  Not so.  He was back on oxygen.  His lungs were not at their prime.  He was so full of phlegm it was scary.  Needless to say, the ride home was stressful.  He was choking, coughing and spitting up all over the place.  I love the 401, because you get places quick, but at times like that, I'd much prefer back roads, where it's easy to pull over and care for him properly.

Today was a totally different day than yesterday.  I woke up to find Jacob almost completely weaned off the oxygen and his lungs perfectly clear.  Bizarre.  There's no explanation.  Talk about emotionally draining.  One day we are fearing a pneumonia may be setting in, the next day he gets a clean bill of health from the visiting nurse.  

We're living these days not knowing what to think.  Hind sight is always 20-20!  Things become somewhat clear when we look at the past, but in the present, it's hard to know what's what.  We are continuing down the road of uncharted territory.  Many days I wish the road could be slightly charted.  That's not to be our lot with Jacob.  We know God has a divine reason for this, yet it's getting harder every day dealing with so many unknowns!!  Every day we live with all the fears and cares, it drains more and more of our strength.  Yet, God has promised He will not give more than we can bear.  It can get painfully difficult to feel that.

I've listened to a topic on grief which I found very beneficial.  Rev. Vergunst knows first hand what grief is, as his first wife passed away due to cancer.  It's nice to listen to someone who can speak from experience.  Much of what he spoke about we could relate to.  We have a weighty task set before us, considering we have 3 children who's grief process will continually more difficult!

Breanne spending some quality time with her brother.  It's beautiful to see her taking the initiative to pick him up and console him when he really needs some snuggles.

 

Another Plateau

It seems to us that Jacob has reached a new plateau.  For the past week and half or so, he hasn't shown us any new developments (all things considering, that's a positive.) 

When Jacob was just a couple weeks old, we had a meeting with Lisa, the Palliative Care Nurse Practitioner (her actual title is Symptom Management and Supportive Care.)  I had little understanding why we needed to meet with someone in symptom management and supportive care.  It was told us from the Medical Team that it would be beneficial for us.  Wow, were they ever right.  She drew the following diagram during that first meeting. 

A diagram I will never forget.  We were told 'Jacob will plateau, then regress, plateau, then regress again.  Some plateaus will last longer than others.  Some regressions will take place rapidly.  We're unsure of how many plateaus Jacob will have.  We're all hoping the plateau's are long.'  I can still hear the words in my ears.  For the past half a year we haven't seen progress, only regression.  (One amazing fact though is that Jacob actually did have small progress during his second year of life.)  Thankfully he's plateaued again.
There sure seems to be no light at the end of the tunnel if we keep our focus on Jacob and his condition. What a sad lot.  Yet, there is a bright side.  Oh, for him to see His Maker in perfection.  To be rid of all his weaknesses and pains.  Forever!

This past Saturday we were privileged to have Jacob's pictures taken by a photographer who is affiliated with Helping Hearts.  It is an organization which captures the precious moments with special needs children and their families.  The photographer was simply amazing.  I'll post some pictures once we have them :)  Yes, I'm super eager to see them.  What a blessing to be able to take 2 year pictures!

Here's some odds and ends from the past 2 weeks.

Julie, one of Jacob's snuggle partners at the respite home! 

What a unique way to sleep. That would be our Jacob :)  Super fussy one minute, then all slumped over and fast asleep.  I love his red hair!

Exploring in the high chair.  It's super fun to have him as part of the family during meal times.

The end result of happy stimulation.

         

2 Years

    Jacob has hit the large milestone of 2 years today!   Looking back, we never thought we'd see his first birthday, now we are given another year to celebrate.   His life has been spared through all the abnormalities which came his way this past year.  Praise God from whom all blessings flow.

The girls cards for Jacob

Peacefully sleeping this morning.  Thankful for this sleep, as now we are given the time to get things prepared for our families to come over tonight.   I wouldn't want to have a birthday go by without our families, as they have been such an incredible support over the past 2 years!!

       As we look over the past year, we see that the roller coaster ride has continued.  The ups of Jacob responding by smiling and giggling to his family :)  Those were huge ups.  We've also had ups with encouragements along the way.  Also, people upholding us in their prayers.  We felt upheld by those prayers many times.  Family and friends showered us with tokens of love.  Many meals were prepared with love.  Care and concern shown in many ways, none of which we take for granted, but thank God for placing love in their heart!!  We feel another huge up that we constantly are dealing with, is such a great medical team standing beside us.  We wouldn't be here if it wasn't for them too. 

Meghan, one of our night nurses.  What a great way to start off his birthday - with Meghan.  She is AMAZING!!  We love our 'Meghan' nights!!

          The downs were many.  Too many from a human standpoint.  Downs with such irregular breathing which continually is getting worse.  Downs with irregular temperature.  Downs with irregular rashes.  Downs with several pneumonia's, including a couple lengthy hospital stays.  Downs with feeding intolerance's.  Downs with great nurses leaving Jacob's case for another job.  Downs with pressure on family life.  Downs with the smiles and disappearing.  Downs regarding our ability to look at the circumstances instead of looking to God, the upholder and sustainer of all things.

This was a couple days ago, but I couldn't resist posting it.  Special daddy-son time.  

    

Unsure

      Unsure.  That one words sums up my thoughts of late.  Unsure what the future holds.  Unsure what tomorrow holds.  Unsure what an hour holds. 

     Unsure what the new developments mean.  Or, could I say denying the reality of what the new developments mean?  I wish I knew. 

     It was so exciting when we could wean Jacob off the oxygen last weekend.  What an encouraging step! 

      The oxygen-free stage didn't last very long.  He's back on 02.  He had a period today of bizarre breathing.  Scary breathing.  Thankfully my mom was here.  I can always use her calmness.   Thankfully the nurse came in when he was still gasping irregularly for air.  We're guessing it's another one of these things that are being mis-fired from the brain, but hopefully will find out tomorrow for sure.  How long?  How long, Lord?  

     Yesterday the CNIB therapist came to work with Jacob's vision.  She was extremely happy with Jacob's response in his 'little room.'  This has been a constant positive for him.  He responds amazingly in there.  Today, we placed him in there, simply because he was Mr. Cranky Pants, and we didn't know what else to do with him.  After some play time, he settled and went off to sleep for several hours.  We just never know!   

Sleeping so peacefully in his little room!

     

The Past 5 Days

It's hard to believe it's only been 5 days since I wrote the last update.  It feels like much longer!!  Much has taken place in just a mere 5 days.

Last Wednesday we had a meeting at the hospital with much of the team involved in Jacob's care.  It is so important to have everyone present and discuss things collectively.  I figured the team would expect me to go over the new developments, so Paul and I made a list before hand.  It's hard to believe how many changes we've seen in a month.  Personally, it's kinda scary!!   I feel so insignificant in meetings like that.  Here I am sitting with nurses/doctors/nurse practitioners/social workers/managers who all have many years of schooling and training, and here I sit, with...maybe not quite so much schooling!   

Some things discussed were:
     -Jacob's irregular temperature - he spikes fevers, but they disappear without Tylenol
     -increased irritability - it's continually getting harder to sooth him
     -oxygen level - his lungs are clear, yet he requires oxygen 24/7
     -'cycling' of legs - wow, can he cycle!! He kicks his legs in a circular motion for extended periods of time.  It usually goes hand and hand with irritability.
     -having periods of non-responsiveness
     -irregular breathing - sometimes he stops breathing for lengthy periods of time, other times he breathes really short breaths, then takes a large one, plus other breathing abnormalities 
     -sleepiness - at times during the day he actually falls asleep without the sleep med.  He's also sleeping much longer stretches with the sleep med at night.

These concerns were all summed up with the brain sending wrong signals.  That's what we were afraid of, but indeed it was confirmed.  We've pretty much exhausted medications, and there are no other treatments which would benefit Jacob.  How I wish I could control the brain.  Even a little bit.  Even a tiny bit.  But, it's so out of our control.  We just sit and watch, feeling so hopeless.
The palliative care nurse stated that she is unsure how long Jacob can continue this way.

How long can his body continue to fight for breaths?  How long can it continue to regulate his temperature?  How long will he be 'somewhat' responsive?  How long can he continue to be so irritable?
Yet, we are called to look beyond his trials and struggles.  We are called to look to Him who promises to NEVER leave us nor forsake us.  That's true for Jacob also.  He cares for him also!   I often think of Daniel's three friends in the fiery furnace, feeling no pain.  The same could be for Jacob also.  God is the same yesterday, today and forever! 

We were able to go away for a few days though.  We all came home more physically exhausted than when we left, but mentally, we felt refreshed.  We've never felt so clearly the need for mental refreshment.  It was tough leaving Jacob, knowing we were going to be a couple hours away, but we trusted God would watch over Jacob and provide him health and the nurses wisdom in dealing with him.  We were not put to shame!!

I picked Jacob up today from respite.  His primary nurse was working :)  She's a gem.  She knows Jacob really well, and is able to work with him in amazing ways. 

Nicole with Jacob, always a good day :)

Jacob playing with an emergency blanket. He loves it!!  I really should try to find one.