An Unexpected Finding

Jacob's irritability has been high since last Thursday.  His stay at the respite home (Thursday to Saturday) was an adventure for the nurses, as his irritability was abnormally high.  I picked him up on Saturday, noticing that every time we moved him he would cry.  By Sunday morning I was really contemplating taking him back to emerge.  I was going to change his diaper late morning when I realized his leg was extremely swollen and hot.  An emerge trip was a definite, with an answer to his irritability.

After the x rays were taken, it was confirmed that his femur (thigh bone) was broken.  Poor guy!!  I can't imagine having a broken bone for several days and it not being in a cast.  That's one of the hardest things for me to deal with in this whole event.  This boy struggles every day, every night, to some degree or another, and then this.  It breaks my heart!!

After weighing different options, it was concluded that they would plaster cast the leg, but not set it, as setting the bone takes sedation.  What that means for him down the road, I'm not sure.  The doctors were not comfortable sedating him, taking into consideration his neurological condition.  They aligned it as much as Jacob would allow (which was A LOT more than I would have allowed!!)  I can't believe how tough that little boy can be!  What a trooper!!  

He was admitted to the paediatric floor where he was kept for observation for the night, I was so disappointed that our previous night nurse, Kim, wasn't working at the hospital.  He seemed to be OK over night, so next week Monday we go for a follow up appointment and to get the plaster cast removed and a fibreglass cast put on.  That should be way lighter, and much easier to handle.  This cast is huge!!  The next week is going to have its own challenges considering how easily it can be to break/misplace his hip with all the weight on his leg.  I don't want to think about those possibilities.  All the 'what if's' have to be put aside, but its brutally hard right now.

Through all the darkness, we are thankful that he didn't need surgery.  I was just imagining the doctor putting in a screw and shattering his fragile bone.  As much as a broken leg isn't what I was looking for, in many ways it's easier to deal with than a pneumonia!  God provides us what He seems fit.  At times, the clarity to that truth becomes quite hazy!    

Different than Expected

Well, this morning our whole house hold was up very early due to Jacob SCREAMING.  Not just crying, but screaming.  The nurse was doing everything she could think of, but still no success.  I took Jacob from her but wow, he didn't appreciate that either.  After administering Tylenol he was finally quieting down, just to get fired right up again.  After some time we gave him his sleeping med, to see if he was just tired and couldn't settle himself.  It settled him somewhat, but he was not near as relaxed as usual.  We waited until 8:30, and as soon as he was lifted out of his crib, he was crying hard again.  It was confirmed at that point we had an emerge trip put into our day that we were not expecting.  Jacob was scheduled for an admission at Kids Country Club, but there was no way I could bring him there in that condition.

Our night nurse was extremely concerned, so she stayed with Jacob and myself up until the moment I left for the hospital, at 8:40.  To understand the picture maybe better...the nurses usually leave at 7:00am and are ready for some well earned sleep.  This morning she was in no hurry to leave.  She decided that she wanted to go with us to emerge, as she was also curious to find out what was up.  At least I had some company - and fun company too :)   
We were helped immediately :)  Chest and stomach x-rays were taken.  Urinary tract infection test was done, and blood work taken (after 2 tries.)  All showed nothing wrong.  Hmmm.  Jacob's life can be a guessing game, which today was no exception!  They thought maybe the screaming was because of teething, a charlie horse, pulled muscle, brain misfiring, or just a bad day.  It's so hard to know anything concretely with kids that are extremely complex!

We'll see how he does at Kids Country Club, as I did take him there after the hospital.  As long as he was being held he was ok.   I'm hoping he doesn't give them too much trouble!
 
The nurse left us at that point.  What an amazing nurse.  Talk about going above and beyond her call of duty!!  She deserves more than a 'Hero's in the Home' award!!  Thanks Ashley!!

We see God's upholding hand in this way too.  To give us a nurse that is so compassionate and helpful is totally given from God's abounding mercy.  

Thank you!

We had a community meeting on Friday to discuss the latest observations regarding Jacob.  The meeting involved most of the people who are involved from the community.  It was a relaxed meeting, but one of the most encouraging meetings we've had to date!  We have a GREAT group walking this path beside us!
Becky, our case manager lead the meeting.  She is one who's understanding and compassion goes above and beyond the average person out there (even in the medical world!)  Her listening ear is always ready to listen to our joys, sorrows, pains, concerns and amazement's.  Her one observation that really stuck yesterday was that Jacob is teaching all of us!  When we all thought he was heading in a certain direction, the path changed and now he is on a different path (and a much better one!!)

Next, they asked me to share my findings in the last few months.  It was short, but I was thrilled to say only positive things!!!  He's still gaining weight (he hit the 11kg this week).  We've been seeing plenty of smiles and giggles this week, let alone periodic coos in response. Also, Marije and I just completed an infant (well, and maybe not such an infant) massage course which he responded extremely well with.  It was super fun.

One of the MANY smiles we saw yesterday!

Our weekly nurse gave a report saying how difficult it is to diagnose Jacob, because of the abnormalities of the brain stem.  A fever could mean nothing, but if he should have a fever, he may not have one.  This aspect makes it hard to figure him out.  Basically she summed it up that we must take Jacob each and every day as he is and deal with what he gives us.  We've been told that we have one of Oxford County's best visiting nurses.  Providence!!  She's been with us the longest of anyone in the community, and has sure walked this road, compassionately right beside us.


O.T. and P.T. summed up their time with Jacob as one that is continually changing.  Jacob needs frequent position changes and chest physio to keep his lungs in tip top shape.  Incorporating different play options is vital to keep his body in moving, workable condition.  They are such a fun pair!  I feel spoiled to have them working with us! 

Our nurse manager gave the report of the struggles with night nursing - nurses leaving for different jobs, nights not being able to get filled, communication issues and several other issues.  We're hoping that in the future this part of our life gets easier!!

The social worker talked about the success we just had regarding funding for the hi-low base and extra respite. She was still excited for us.  She does all the paperwork for most of the government and funding applications, as  I would need a PHD to understand them :(  She sure makes our life much easier.  Hats off to Tammy!

Community Living Tillsonburg was also represented and talked about the snoezelen room and have Jacob's siblings come with Jacob one time, to see exactly what happens in a snoezelen room.  What a great idea!!

The team together is strong, energetic, caring, understanding, supportive and extremely capable.  I love the unity that is felt when they are all together - they are a strong driving force all working for Jacob's comfort.  We feel truly blessed to have each and every one of them involved in our case!  Thank you from the bottom of our hearts!!

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!