President's Choice Charity

Well what a day September 30 is.  Jacob has reached the 2 1/2 year milestone (that's double the high-end average life expectancy).  What a blessing from above which we totally never anticipated seeing!  Plus, we had the privilege to celebrate at the Tillsonburg Zehrs due to Jacob being approved for some funding :)  The managers at Zehrs wanted to meet Jacob, Paul and I to actually meet us and hear the story of how the donation will change our lives.  It was an honour to promote the charity in this way!!  The cashiers were excited to be able to see firsthand where the money goes.  The cake was scrumptious too!

The President's Choice Children's Charity has funded extra respite hours for 6 months and an interior base for Jacob's stroller.  It will make life much easier to have him sitting in the house - instead of so much laying in his crib :) 

The respite will be wonderful to have!  Hopefully it will take away some stress by having more time to do the motherly/wifely duties. 


I must add an important tidbit of information regarding the PC Children's Charity.  Every dollar that is donated by Loblaw’s Customer's goes directly to the kids and their family :)  Loblaw’s themselves look after any administration costs.  This past 2 week campaign, nationwide, they raised 2.4 million dollars!  That's huge, considering a donation is $2.00 at the till.  
Thank you to all of you who donated to this worthwhile cause!  We appreciate your donation, along with the many other families who are blessed by receiving financial help in their trying situations.

Paul with the assistant store manager.

Cold Season has Arrived

Unfortunately Sheryl and Caleb came home with colds last week.  That's never encouraging considering the cost of a 'common cold' for Jacob.  Well, he got it.  It showed its ugly head on Saturday.  Saturday and Sunday we were in limbo not knowing what way he was going to go - get a full blown cold, or overcome the obstacle quickly.  All seemed to be going decent until Monday afternoon.  A high fever set in, he had low oxygen saturation and a high heart rate.  That's a horrible combo!! 

After a call out to the nurse, she came and assessed his lungs and confirmed there were 'crackles' in his lungs :(   We called the nurse practitioner who advised us to keep a close eye on him over night and see what happens (stressing us to call her if anything changes, no matter the time.)   Talk about dedication. If it was a virus, there's nothing the hospital will do that we can't do at home.  Tuesday his lungs were somewhat better and yesterday his lungs were CLEAR.  Amazing!  I was in shear unbelief, yet so thankful.  Today he was battling a bit more again, but we're hopeful that he'll overcome this hurdle.

It adds to the care tremendously to have him off his norm!!   Considering how he struggles to breathe at times, it's simply outstanding that he still will smile!  Yes, yesterday he gave some smiles again.  I love that boy!

Lately

Our life with Jacob has somewhat shifted in the last month or so.  He requires constant supervision with me being at arm’s length, pretty much every minute of the day. His abnormalities increase, and so does his care (and right along with that our love increases by leaps and bounds too.)

After meeting with our paediatrician last week, he suspects the 'seizure like activity' we’ve been seeing are not seizures, but brain stem misfiring.  Neurology is getting involved again, so we'll see where that directs us.  Jacob may have to go for some testing.  I'm thankful that the educated guess the doctor has given is that Jacob's not having seizures, yet I'm concerned as his brain stem continues to show more signs of abnormalities.  The outlook is grim.

Yet, amidst all the doom and gloom, Jacob continues to surprise us.  Surprise us with a smile here and there and a rare giggle.  It's so uplifting.  We can go months with no response, so when we get them its heart warming.  Even last night he thought something was fun, so he giggled.  Just one super short one, but it still classifies as a giggle :)

Several weeks ago we had our Pastor and his wife visit.  What an evening of encouragement and direction!!  Weeks later we can still swim in the ocean of thankfulness!   He told us something which has made us view our situation through a different set of eyes.  He said people call Jacob handicapped (which we could all agree, he's handicapped), yet, your other children are far more handicapped than Jacob.   Jacob doesn't have the capabilities to develop a sinful thought or a sinful desire or to carry out a sinful act.  Your other children have many sinful thoughts, desires and sinful actions each and every day.  Jacob resembles God's image in an amazing way.  What a thought.  What an encouragement for our little Jacob!  Jacob was made in God's image!!  So precious.  What a pleading ground.
We've worked on transforming Jacob's room into a snoezelen room once again.   He loves the quiet, darkened room and soothing music, so it only seemed right to put it together again.  After talking with different therapists, we have a room where Jacob can relax his little body.

Enjoying his own ball pit.  An amazing fact about the ball pit is that he can sit supporting his head.  Usually his neck has little/no control, yet in the balls he keeps his head up for some time.

In the darkened room.  He seems to enjoy the lights and music together.

When the girls are home, Jacob can end up anywhere.  If he's fussy, they usually know what soothes him, so they lend a helping hand.  I sure miss that now that they are gone to school!!!

Another one of the girls ideas.  If one thing doesn't work, they go on to another.  It doesn't take long for our living room to look like a storm just ripped through :)

Jacob in his favorite chair!  He's also trying out his new feet splints for the first time.

 

We're Back

It's sure been a while since I've actually took the time to write.  There's not a day that goes by that I'm not 'writing' in my head.

Jacob has continued on in different ways.  Ways that confuse us, ways that uplift our spirits, ways that concern us, ways that uphold us, and many ways that are continually teaching us.  His journey is teaching us patience and trust!!  It's hard when I'm the type of person who wants to know why and how.  Jacob's life basically doesn't include why and how. 

Yesterday marked our seven month milestone since Jacob's last pneumonia (and 10 months since our last hospital admission!!) .  That's amazing beyond words.  Seven months ago we were mentally preparing (as much as that's possible) for a funeral and now seven months later with few significant changes.  Some of these changes have been happening at a quicker rate it seems lately, but nothing that is causing the doctors to get really concerned.  Most of the changes can be hard to diagnose 'why'.  I have to be content with little or no answers.   The doctors at times don't know and dislike having to tell us, 'I don't know.'  Time will only tell!

We're seeing much more stiffness with an increase in jittery, jarring behaviour.  It seems to be getting worse in the last month or so.  It looks like he gets scared really easy.  Even just a slight position change can send him over the edge.  What's going on in the brain would be so nice to know (or maybe not.)

Last week we were able to have a high moment and I mean a really high moment (or should I say - moments.)  We had one of our night nurses, Andrea, here for a day shift.  Breanne and Andrea were talking to Jacob when suddenly he did it - he giggled and giggled.  I came storming to the scene to hear those priceless giggles and to actually witness him smiling in response.  Simply breathtaking.  We were able to capture some of his giggles on video and his most beautiful smile on camera.  It's been half a year since we've seen a smile or heard his giggle.  He can have a really content look on his face often, but never has it been a full smile.  I totally understood how a giggle or smile could get us through the day.  I sure had a bounce in my step the rest of the day.

Andrea holding Jacob and thoroughly enjoying his giggles.

  Yesterday he was using his vocal cords a lot, but in a different way - crying.  When I picked him up at respite yesterday he was hoarse sounding, but the doctor was quite sure it was from a strong crying spell he had earlier on in the morning.  Well, he's still hoarse when he cries, and it's not going to heal the way that he's been crying today.  What a change.  Hopefully he's not coming down with something!