The Journey Continues

It appears that we have entered the last journey of Jacob's life.  The hour of his departure is unknown to us, but the time does seem to be somewhat short.  Hours, days, or possibly weeks - no one on his medical team is giving any direction, as the road is uncharted and unpredictable.  We trust that God's timing is perfect and are comforted in the fact that His will will be done. The battle continues of wanting Jacob to be out of all his suffering, yet the flesh and blood crying out for him to stay.
We covet your prayers! 

Providentaly, one of our girls brought it to my attention in September that we should be having family pictures taken.  I understood her tone of voice and acted on lining up a photographer.  Little did I know at the time how precious those pictures would be.  Here is my favorite picture of our little man. 

 

Make-A-Wish

In the spring our social worker told us that Jacob was eligible for a Make-A-Wish.  After much consideration and advice, it was suggested that we apply for a screened-in gazebo, which would enable Jacob to enjoy the outdoors without being eaten by the MANY mosquitoes we have here.  It has always been impossible for Jacob to be outside here from May - July due to the enormous amount of mosquitoes.  This summer we only brought him outside a couple of times due to the amount of bugs.  

After some time, we were thrilled to hear that Jacob's wish had been accepted.  The construction date had been set for October 9.  Home Depot came with 9 volunteers who donated their time to help build the gazebo.  It truly was beautiful to see those people willingly take the day off work to help one who is less fortunate than most.   They worked with their heart in the project. Good humour was in order for the day!

Make-A-Wish surely went above our expectations!  They arrived with a wonderful array of donuts and muffins for break time.    When lunch time arrived, a wonderful selection of subs were brought in.  The workers were re-fueled and ready to go again.  The humour resumed and they were all in the groove again. 

Around 4:00 the project was complete.  Pizza, pop and cupcakes arrived to celebrate. 

Not only did we have a screened-in gazebo, but one with windows all the way around and...it came fully furnished.  A beautiful wicker patio set sure gave a complete and homey feel.   Jacob was also given a whole basket of goodies - teddy bears, sensory toys, books, blanket, and more.  One of the volunteers went to some local nursery's and received several plants.  A London nursery graciously donated a tree which they named 'Jacob's tree.'     

We stood amazed and humbled at the love that was put into the day.  God had indeed blessed us above what we could have asked for! 

The construction begins

and continues...even though they were battling high winds.

The willing volunteers with a job well done!! :)

The completed project

Jacob's first time in the gazebo :)

One day a couple weeks back we were scheduled to have an OT and PT appointment but Paul was making too much noise working in the addition for us to be in the house.  (Jacob didn't handle the noise well at all!!!)   Our conclusion...let's have the appointment in the gazebo! Jacob loved it and Paul was able to complete the necessary tasks :) 

Love

I love you bro!!

These two boys already have a great love for one another.  As we were contemplating if Aaron was smiling in response, it was confirmed when the two of them were spending some time beside each other.  Aaron continually smiled at Jacob while Jacob was rather soaking in the love!!  

What a privilege and blessing it was for me hold our 'big' boy again!!  After 6 long weeks, my arms wrapped around Jacob with a host of emotions.  To see him smile sure made my day!!  After holding Aaron for six weeks, Jacob seemed that much bigger than before, but also soooo stiff.  
Jacob has been at respite for several days which has given a much needed break.  Trying to juggle the two boys care has been difficult, but yet rewarding.  I'm hoping the transition of Jacob back home is going to be a peaceful one!  We'll see what tomorrow and the days ahead brings.
Exciting news in the construction world...Jacob's room is becoming more and more a reality :)  With most of the noisy work coming to a close, it's a few of the quieter jobs left, which can be worked on when Jacob is home.  We found out (the hard way!!!) that the noise and vibration of the tools/machines were playing havoc on his brain.  Here is the project as of today.  I'm hoping that the mud is going to come to a close soon!!  We're so thankful for all the help with the building!  It truly is a big job, but overall it's gone smooth with excitement filling the room!

 

Progress

 Little did I know even one month ago how much joy this little one would bring into our family.  The concern of how we were going to care for 5 children weighed heavy on me since the day we found out we were expecting.  The fact that Jacob takes so much of our time and energy made the realization of being a mother of 5 kids a daunting task!!  With so much thankfulness God knew perfectly what our family needed!  It was another child.  The children have been enjoying every day with their new brother.  The girls love being little mothers, and Caleb - well that's a whole other story!  He is super protective over his brother Jacob, and it's looking like that same protectiveness is appearing over his brother Aaron.  He wants his brother to walk soon :)  He asked us on the weekend, 'how many more weeks till Aaron is going to start smiling?' We replied 'hopefully in about three.'  Caleb quickly asked, 'then is he going to start walking?'  I love how his brain ticks :) 

 Jacob has been gone quite a bit since Aaron has been born, but when he's home he still gets plenty of attention!  Thankfully we've seen lots of smiles this past week, which makes everybody's day!  We see it more and more how Jacob loves having his siblings around.  It also seems like he's getting used to Aaron's crying.  At first, he really became agitated with the extra noise, but now he is getting adjusted to the new norm.  Thankfully Aaron is also getting used to his new surroundings and is crying much less :) 

 Jacob's spa day :)  Marije decided to try something new with great success.  He really seems to enjoy the sensory stimulation. 

 Talk about trying something new...  our therapists talked to me several months ago about trying Jacob in a stander.  In their mind, he was up to the challenge.  On Thursday it was brought into our home as a trial.  Little did we know how great he would do in it!!  He loves it.  We have to take it really slow, as his leg muscles have never been worked like this, but so far he's responded extremely positively.  The stander is great for Jacob's muscles, tone, bones, and so much more.  Every time we place him in the stander, we'll add another minute or so, and see how he does.  It seems like we're seeing progress :)

 The walls are now poured for the addition.  This week is stacking up to be a busy week with lots of work being planned on.  We've seen the need for the addition for a while, but with Jacob's new stander, we have to leave it by the main door, as we have no room to store it.  The addition is looking more beneficial all the time.  The extra room is going to be a welcome treat!! 

In South-Western Ontario, rain has been in abundance this summer!  Building the addition with 5 inches of water in 5 days has added plenty of excitement for the kids.  It doesn't matter how much water or mud is in the hole, Sheryl and Caleb will be found helping Paul do whatever needs to be done!  (They are far more eager to help Paul outside than to help clean up all the dirt/mud they bring in the house :)

New Additions

It sure has been a while since I sat down to formulate my thoughts about our on-going journey.   This post will be a rambling of my thoughts of late.   

Life has taken on an extra busyness since the addition of our little Aaron on Aug 22.  This little bundle has sure changed the dynamics of our house hold.  Unfortunately, in order to welcome Aaron into this world, I needed to have a last minute c-section.  This has come with an enormous strain, considering I am unable to pick Jacob up, hold him, change his diaper etc. for six weeks.  As a mother, this breaks my heart.  I try to tell myself that God has ALL things in His control and ALL things happen for a reason, but I’m stumbling on this one.   To see Jacob so upset and me unable to console him brings pain unimaginable.  Jacob has been somewhat off his norm since Aaron has been born.  We’re unsure of the reason.  When we put the two boys together, Jacob quite agreeably absorbs the new setting.  He seems to be very content and alert when Aaron is close by.  The messages we are receiving from Jacob seem to be mixed...

He is currently at respite, where he seems to be doing fine!  I'm so thankful that he is happy there.  Hopefully by the time he comes home next week Wednesday, Aaron is more predictable and maybe will not exercise his lungs quite so much :-/  Time will only tell what the future holds, but I'm quite certain the next 4'sh weeks will have stress unique to having a new-born and a special needs child in the house at the same time.  

We are excited to say that the addition has finally started.  Wow, what a lengthy process!!  The footings are poured and are ready for the walls next week.  :)  Jacob's new bed has been ordered and should be ready shortly after the addition is complete!  What a welcome treat that is going to be for all who care for him (and for Jacob who will much more room to move without hitting the side rails!!)

Jacob is just sooo big - and white!!

The nurse was having fun with the 2 boys.

Paul pouring the footings for the addition.  Considering he works in concrete, this was second nature to him.  It was neat to see him work in his element! 

    

Thoughts

Lately, it's been hard to know what to say,
As we continue down this way.
It's sure been a tough and hard time,
As we continue to care for Mr. Sometimes.

We've had plenty of meetings,
Some about his continual issue with feeding.
He's still not gaining weight,
Which we may never see at this rate.

His breathing has been a mess,
It sure adds plenty of stress.
Last week to emerge we went,
Yet nothing was found in the event.

We asked ourselves how can that be?
He was sick, all in emerge did agree.
A high fever, weakened, low sats and laboured breathing.
We left with a mixed emotion feeling.

Lately, Jacob's undergone lots of medication changes,
Is it just another one of his stages?
Nothings stays the same for long,
As the battle continues for what is wrong.

Is his condition worsening?
It sure causes our heart much hurting!
We never know what to expect,
Or what will next take effect.

We're blessed with a great night nursing team,
Love and compassion is their over-arching theme.
Each one exceeds our expectations,
As they lovingly adapt to all Jacob's complications.

Anxious fear can grip us as we near our due date.
What will then be on our slate?
A fifth child in tow,
Thankfully the baby is healthy for what we do know.

In the recent past, we've had tears,
Tears of joy or a heart wrenching fear.
God says He'll carry us through,
To lean on Him is all we can do.

We continue to covet your prayers,
And all your words you share.
Your encouragement has been so uplifting,
We find it thoroughly comforting.

Summer Days

Well, this week as I was discussing with a medical professional how the summer affects our family life and explaining how much easier my life becomes, he quickly exclaimed 'I've never heard a mom say that before, let alone, a mom of 4 kids.'  I LOVE the summer days of having the kids home.  They are such a big help in so many respects.  It truly makes my life so much easier!!

Not only do I love having the kids home, so does Jacob!!  The floor is his favorite place as he feels the vibrations from his siblings.  When they leave the house to play outside, he often becomes whiny!!  He's become so aware of his surroundings.  It's truly beautiful to see.

Sound asleep, or maybe just pretending :)

What a treat to have Ashley come back for a day shift to play with Jacob.  The first thing she did upon her arrival was to get on the floor right beside him and start playing/talking with him.  What a blessing to have her still involved with us!!

One example of how our life becomes easier when the kids are around.  They are often the babysitters!!  On this particular day, Jacob was quite out of sorts for some reason.  Even though it was super muggy that day, it was a last resort to take him outside.  I truly did not know what else to do with him!!   He loved it and...his lungs became super clear.  So unpredictable!!  Sheryl was quite pleased that she could watch her brother :)