Friday, 21 December 2012

He's Suffering

      Jacob is suffering!

      His breathing is laboured.  His lungs are sounding wheezy.  For the past 2 nights, he hasn't responded to the sedation medication.  I'm unsure if this is all related.  Today marks the one month mark since our last admission - that seems way too soon to head back to the hospital!!

      How my heart aches to watch him suffer!!  Every breath is a struggle. 

      Paul and I are reminded how much we are in need of wisdom.  We are so incapable of making right decisions without guidance from above. 

       I was going to do a summary of Jacob's week, but that is going to have to wait till Jacob isn't zapping all my time.

Despite his suffering, he's still able to provide us with plenty of smiles. 
That's giving me a small hope that hopefully he's not too sick, and we'll be able to deal with this at home!!

Wednesday, 12 December 2012


Here is a glimpse into our cowboy photo shoot (which Paul knew nothing of.)  It was hard work, but so worth the effort!  There is a special connection between fathers and sons, and I often feel Paul misses out on things that he would be doing with Jacob if he was a 'healthy - typical' 20 month old. 
Paul's the cowboy type, so cowboy hats, a rocking horse and 2 boys just go hand in hand. 
Our first try (about 100 pictures), Jacob really didn't respond positively, but we've learned we have to 'go with the flow'.  Sometimes things work out and sometimes they don't!  Mr. Sometimes :) 
When we had Jacob on the rocking horse, he had no strength or coordination to keep his head up.  Yet I love this picture because of Caleb right behind loving every minute of it.  His eyes are glistening.  He thought it was great that the two of them were on the horse. 

Jacob having that look of 'are you almost done yet?'

I'm not sure Jacob could look any more serious!!

Caleb's a future cowboy by the looks of his stance :)  I LOVE these boys!!

Not so sure!

Jacob's head is way too small for this hat, even though it's the one Caleb wore at this age.  His head totally disappeared in the hat.

The next day, when we tried to get only Jacob, it worked amazing! He responded amazingly.


Monday, 10 December 2012

Back Home

      Jacob had an enjoyable week at respite last week.  The nurses there couldn't get over the difference from all his previous admissions:)  They LOVED the cuddles that he gave all week long.  Lots of their kids are older, so it's much harder to cuddle and snuggle them, but Jacob is still very cuddleable :)  He's been going to that home since he was 6 months old, so they've seen him change along the way.  Thankfully, this time the change was a positive one.
      Once we were home on Saturday, Jacob gave plenty of smiles to his family.  Oh, the preciousness!  He responded to everyone about the same, except for Caleb.  He had the best and biggest smiles and giggles for him. 
Jacob providing Daddy with some smiles.

Providing Caleb with LOTS of big smiles!

And more smiles, coos and giggles.  What a special bond these two boys have! 

A beautiful collage Paul received! It was more than an adventure to get the pictures, but the time and effort was well worth it!!! 
Paul was thrilled with it.  It's a keepsake for sure!!  

Sheryl and Jacob snuggling on the couch, and Jacob thought it was great!  He kept on giggling every time Sheryl moved.  It is such a blessing that the kids have been able to experience these great moments with Jacob.  They've experienced so much in the past 20 months, that to have positive moments, is heart warming for all involved!
  Sheryl never ceases to amaze us with her imagination and stories!  She was reading yesterday about raccoon's when she exclaims, 'Our night nurses are just like raccoons...they both sleep during the day and are awake at night.'  Cute.  It showed us again, how they've adapted to this life.  It's just part of them.  I'm not sure the nurses would want to be compared to a raccoon, but the thought was cute. :)    

Saturday, 1 December 2012

Happy Times

     To say we have a different Jacob may be an understatement!  It's amazing what medication changes can do.  Even though he seems to be MUCH more content, we realize that it's only because of the meds that's he's on.  They are truly masking his symptoms.  Yet, we see it as a blessing that we are able to have these amazing days! 
    Jacob is sleeping so much better at night - to the point that the night nurses are bored some nights :)  That seems like a good problem to have.  When Jacob is awake, we are seeing much more responsiveness to his surroundings and overall he's much more content - YEAH!!

Enjoying some game time.  I'm not sure who enjoys these moments more...Mom or son??!!

Thoroughly enjoying his sensory toy. 
Oh yeah - sleeping with the help of no meds :)  He was laying, playing with his sensory toy when he fell asleep all by himself.  Beautiful indeed!!
Spending some time with Kim.  What a nice visit.  I still miss Kim's love and care that she gave to Jacob!! 
Paul and I with Jacob after a meeting with Lisa, the palliative care nurse, earlier this week.  She's a constant support for us.  If it wasn't for her, I'm really not sure where we'd be today!!!