Jacob's Room :)

 June 12, 2014

 As we plan on this fundraiser, it is a constant reminder of how Jacob has exceeded everyone's expectation.  What a celebration :)  Truthfully God's ways are above our ways!  It brings back memories of Jacob in the isolette in the PCCU, when he was only several days old.  Back then, I never thought we'd see the day that he would 'graduate' to a crib.  Now, 3+years later we are faced with the reality of Jacob graduating from his crib and requiring more room than we currently have in our house.  

Lisa Pearlman is a world renowned speaker who has graciously offered to speak at our fundraiser.  She is a captivating, knowlegable and sincere woman who has dealt with Paediatric Palliative Care for years.  She's been involved in Jacob's care since he was 10 days old, and has been an enormous asset ever since!!  I'm more than slightly interested in what she is going to say :)  

To say the least, the nurses can't wait for the addition to begin (and finish) so they can have their own space with Jacob.  They are looking forward to being able to deal with Jacob in ways without the worry of waking the whole household up.  Yeah, for more sleep and more relaxed care from the nurses!! 

Month's Summary

Over the past month, we've been blessed beyond measure with a relatively stable boy.  I don't think we could get him to a more stable point :)  Here are several of our recent joys/concerns:

- He's been enjoying quite a bit of time outside, which he LOVES!!  He's usually grumpy for a bit when we take him in, but that's ok.  It shows us that his brain properly processes his likes/dislikes, which is a huge stepping stone! :)

- He's beginning to roll onto his right side.  It's so nice that he can become more comfortable on his own!  What a milestone :)

- He's been sleeping at night surprisingly well!  He's been waking up to the minute, that the nurse is done her shift.  It seems when he gets a good night’s sleep, his days are so much more manageable!

- He's becoming much more vocal :)  In a pleasant way.  He's making more different noises in response to different things.  It's truly beautiful to witness.  I love our new found conversations :)

- He no longer needs chest physio.  There is simply no explanation for this, but we'll gladly accept this new stage.  His lungs have been perfectly clear for several weeks. Incredible!!

- A new GI med has been added while another one has been discontinued.  And the world of changing meds continues.  It seems like the med is having the desired effect, so that's a bonus!

- Unfortunately we witnessed another apnea spell on Sunday :(  On a positive note, it was the first one we saw in 6 weeks.  That's the longest we've gone once they reared their ugly head in December.

- By far the least fortunate for us was that Ashley, a night nurse, changed positions in the nursing world for a management position.  We wish her the best, but it's more than difficult to see a nurse leave whose heart was so caring for Jacob.  She was a gem and will always have a very soft spot in our hearts!  The kids had a really hard time with her leaving too, as she was such a fun person to wake up to.  I'm convinced she'll be glad that she's gone though because we've been battling bats in our house :(  She witnessed a bat in our house last summer, and let's just say, she didn't handle it very calmly! 

Ashley - is dearly missed already!

  

3 Years

Virginia is a regular 'visitor' at our house.  We are more than fortunate to have had her care and love watching over Jacob for the past three years.   Yesterday marked the three year mark that she walked through our doors to meet a little Jacob.  She said yesterday how she questioned would we see Christmas?  Well we did see Christmas 2011, plus 2 more :)  :)

Once a week Virginia assesses Jacob's lungs, answers our questions and concerns, deals with medication issues and is often our sounding board for medical questions/issues.  She has been a huge asset for Jacob and the rest of us.

Jacob has learned who Virginia is and we are sure he realizes she is going to get her stethoscope out because he usually starts snorting and breathing really loud.  The noise can be so loud through the stethoscope that I'm sure she has left more than once with ringing ears.  She's gotten so used to his noises that at times she doesn't even try to get an assessment because she knows all she's going to hear is upper airway noises which are deafening.  I'm so thankful that Virginia sees humour through it all. 

One time several months ago Virginia came while one of our night nurses was here.  His lungs had been great for the nurse Andrea for several hours until...Virginia came in.  Instantly he started snorting, snoring and making all sorts of noises.  After attempting to assess a noisy situation, she finally exclaimed, "I'm not Virginia, but Andrea.'  Her reasoning didn't work, but needless to say we were all in stitches.  That's Virginia. She can make a tough situation into a much lighter one!
There are nurses, but there are also nurses who go above and beyond their calling and Virginia is one of them!! :)  What a gem!!  Thanks Virginia!! 

Yep, he's complaining that the stethoscope came out!

He was more than noisy this particular day and Virginia can still smile :)

     

Riddles

Life is full of riddles.  Some we'll figure out, some we won't.  Life with a special needs child is full of many many riddles.  Jacob's life is no exception to that reality!  For the past 2+ weeks, we've been trying to figure out what happened to his leg(s).  Seeing the x-rays came back fine, we knew his legs/hips weren't broken :)  The doctors and nurses couldn't figure it out.  After days of close observation and still no clear direction, I presumed this was one riddle that was left to be unanswered.  Until...the therapists arrive at our doorstep to 'feel' what was going on yesterday.  Our physiotherapist is amazing with her hands!!  She really feels that nothing is wrong with his legs, but something happened (or is happening) in his back.  He is reacting to the pain/discomfort by bringing up his one leg while holding the other one stiff!  He can hold it so stiff, it's extremely difficult to move it! The strength of a three year old amazes me!!  Mary Ellen showed us how to do some gentle exercises with him, to see if he can relax his legs/back more.  The therapists are scheduled to come back the beginning of next week, so it'll be interesting what happens before then.  Her theory totally makes sense to us.  Maybe, just maybe we'll have the answer.

Life with Jacob as a whole though has been good lately.  The weather has been amazing, so he's been spending quite a bit of time outside :)  He LOVES it!!  The only part he complains about is coming back inside.  What a blessing though that his brain registers the difference and he's able to express it correctly!!  That's something we don't take for granted.   

Another Trek to Emerge

Yesterday sure brought trials our way.  Suddenly in the afternoon Jacob started crying/screaming.  There was nothing obvious what caused him to be so irate.  After close observation, I decided to take him to emerge because he seemed to be favouring his right leg.  It makes things so difficult when he can't indicate what's hurting him.  At Emerge, they took x-rays of his pelvis and legs, but all came back with a positive report.  Bizarre.  It's the life we have with Jacob.  We often face the reality of the unknown. 

When he's in pain, like yesterday, it truly breaks our hearts to see him suffer to such an extreme.  The poor boy.
 
His evening and night were OK, but he sure still isn't himself yet.  He's off to respite this afternoon.  I don't want him gone when he's not himself, but on the other hand, it's great to have such skilled eyes on him.  The doctor and nurses there are extremely knowledgeable with these kiddos.

We covet your prayers as we continue down this path, which God has so perfectly laid out for us.     

Year in Review

Jacob turned an amazing 3 years on March 30.  What a milestone, or should I say, what a miracle?!   It's been a year of ups and downs, questions and concerns and much prayer.  Yet, we can stand back and be thankful at an overall good year.  In that past year, he has not encountered one pneumonia - the medical team (and the rest of us) are amazed at that fact alone.

Here are some pictures to summarize our last year :) 

March 30, 2013 Jacob's 2nd Birthday Gathering :)  Content in the arms of Marije!!

The love these 2 share is beyond special.  So thankful to have a spunky boy who loves his 'baby' brother!  Caleb looks at Jacob as a baby, not one who has a disease and a host of problems.

One of the precious poses from the photo shoot from Simply Said Photography.

Another pose

Exploring belly time and enjoying it so much, he fell asleep :)  Little did we know that in the months to come, he would adapt so well to sleeping on his sides and stomach that his sleeping would greatly improve in the months ahead.

Sitting like a big boy :) 

Our first 'slight smiles' in many months!

Enjoying his snoezelen room at home.

Celebrating the generosity of PC Children's Charity!

There it is!!  Finally, the smiles reappeared!!! - October

Sheryl getting some cuddles in.  Enthusiasm sums her up :)

Thinking hard about his play.  He's not so sure. 

Enjoying massage time with Marije.  Oh, those smiles!!  We savor every one!!

Time with Oma is always good!  He was happy to share his smiles with her too.  By this point, we were seeing them regularly, in response!

The broken leg :(

Even though this is one of the cutest casts out there, he despised it.  It only lasted one week.

He would sport this cast/splint for the next 6 weeks.  At least he didn't mind it!

December - this is the night that Jacob started his apnea spells in earnest.  What an unsettled road since!!

I had to put this one in.  This shows a real picture of our kids.  They aren't always sweet - they wanted a picture with the four of them, but little did I know they didn't mean a 'nice' picture.  It's now wonder Jacob can sleep through so much commotion!!

EEG testing and loving it!  This is one of my all time favourites.  Even though he's wearing hospital clothes and the background is nothing fancy, he is smiling from his heart - and that's what matters.

Love his expression here.  He's not sure about the electrodes going back on. 

Breanne has really grown in the last year regarding Jacob's care.  What an enormous blessing it is for us to have her.  She loves to care for her brother and so willingly does anything we need help with.

Living on the Edge

    Last evening I had a couple people at church ask how Jacob's doing.  Well, that question is becoming increasingly difficult to answer, considering what's transpiring with our little man.   Overall he is content, which we are extremely thankful for.  His apnea spells reappeared last week, so that brings along much  concern.  It feels like we always are living on the edge - waiting for the last breath.  He can be so content, then suddenly he won't breathe.  Last week Thursday he had 3 apnea spells, with 2 of them being quite severe.  It's so tough to see him completely lifeless.  Typically he picks up again quickly, but once it took a while for his breathing to become normal (for him!) 

    His feeding is still a concern, as he's not tolerating a proper amount of calories.   He's going to continue to lose weight at this rate, which took so long for him to put on.

   All things considering, we've been blessed to see many many smiles and giggles lately :)  How a smile or a giggle  can cheer our day! 

How he loved his hat!! 

We were even able to capture part of his happy time on video :)