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

Cowboys!

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.

Adorable!!

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!!!
   

Wednesday, 28 November 2012

I KNOW DIFFERENT

A poem which speaks our language.  Written by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥

Saturday, 24 November 2012

Home Again

     We were able to come home yesterday from the hospital with some uncertainty as to what we could expect in the near future.  Medications have been altered, some added and some discontinued.  The ones that have been added need close supervision to make sure the dosages are the best for him.  One med is to make him sleep.  It hurts us to the core when we administer the med!  Every evening when we give it, Jacob is sleeping within 5 minutes.  He sleeps almost the whole night, maybe except for 10 minutes now and then.  It's so nice to see him peaceful, yet concerning to see him so sedated that we can change his dressing and he doesn't even stir.  We follow what the professionals say, yet without God's blessings, all will be in vain.  We pray that God will use the medications for Jacob's good.   
     
      It was indeed one of the most interesting admissions we've had to date.  We seemed to have it all in a matter of 2 1/2 days.  Sadness.  Humour.  Delight.  Surprise.  Overwhelmed.  Pain.  Reality.  Support.  Apprehension.

     We had fabulous nurses, which always makes the road much easier to walk.  One of the highlights was that we had Kim (our previous primary night nurse) on Friday.  It was so exciting to see her love, once again, being poured out on our little boy!  We had a humorous episode with her.  Kim came in to administer some meds shortly after we got the news that we could be discharged.  She was right at Jacob's level talking to him saying that he was going to go home, and therefore they couldn't play together any more.  As soon as she was done talking to him, Jacob let out a huge burp right in her face.  Needless to say, everyone in the room was doubled over (including Kim.)  I believe it was Jacob's way of saying, 'I love you, Kim.'
      
      We dealt with some difficult issues.  The week prior to our admission we were told 'for us to expect weight gain is unrealistic.'  That was the toughest news we've heard in a while.  Again, the negative was set before us.  Our hospital stay brought more things to the surface regarding the care that Jacob is going to need.

      The road ahead looks so bleak, so rocky, and tough in almost every aspect.  One way in which the road looks bright, is to have Lisa walking beside us.  She comes with a wealth of knowledge and experience.  She's genuine.  In the role she plays, she is the bearer of bad news many times, yet she does it in a sincere, gentle way.  She's wonderful.   For our situation (and I'm sure in many others) she's been a huge blessing!! 


Lisa, the palliative nurse practioner
Caleb turning a hospital visit into a game!  No one was able to leave (or enter) the room.

Bein somewhat more agreeable.  We were allowed to leave. It's a beautiful thing for the kids to be able to visit the hospital with a positive mindset!  I'm not sure who loves the visits more - us or the kids!   

     

Thursday, 22 November 2012

Another Hospital Visit

     Early yesterday morning, we brought Jacob to emerg because of a high fever and LOW oxygen saturation.   He has a pneumonia - a different one than he typically gets, and thankfully he is doing so much better already!  Amazingly well!!
    After having a hard discussion with Lisa, our palliative nurse practitioner, it was decided that we needed to add a med to put Jacob to sleep every night.  Another negative!  He just won't sleep enough without some help.  Without the proper sleep, he is constantly GRUMPY!!  It's just too much to handle a boy that cries for hours on end with us not being able to do a thing!  Hopefully with more sleep, he'll be happier when awake.  Time will only tell. 
     We will monitor him tonight in the hospital, and if he handles that ok, we'll be heading home tomorrow.  Once we are home and he's proving to do well with the med, we'll work on getting rid of two of his meds he's currently on, which don't seem to be doing the desired affect anymore. 
     So, hopefully tomorrow is a day that we can reunite as a family again.
     We covet your prayers!!

      

Thursday, 15 November 2012

Miracle

     Miracles happen often, but we need the eyes to see them!  Amazingly, we were able to witness a miracle this morning...

     Yesterday was a day of great uneasiness and many questions.  Jacob's lungs took a turn for the worse.  We were on the lookout for anything that causes concern - fever, oxygen saturation dropping, increased labour to breath, increase in seizure activity etc.  The nurse last night, Meagan, was on guard.  This morning I woke up with Meagan telling me that his lungs were clear - all night!!!!  He had a really good night.  Amazing, is putting it too mildly.  It's simply miraculous.  God indeed is a prayer hearing God!!   We have so much to be thankful for.  Today he seemed much better than yesterday, so hopefully Jacob is on the road to recovery!  Praise God from whom all blessings flow!

Wednesday, 14 November 2012

Oh no!

      Our visiting nurse who comes every week to change Jacob's tube site dressing, assess his lungs and heart, and discuss any concerns, came today.   She's been with us since Jacob was discharged from the hospital at 6 weeks.   She's a sounding board, very understanding and thorough.  She dots the 'i's and crosses the 't's.  What  a huge asset we have with her on our team!! 

      Her conclusion of Jacob's current health is just what I was worried about - another respiratory infection which is getting worse!  This means we are on the brink of a hospital trip.  He's been battling for a few weeks, but it seems to be accelerating now :(

     Please pray that his health would stabilize and that we will be kept from the hospital!  Above all, we have to be submissive with God's will, no matter where that road leads us.  Submission - sometimes so difficult, yet so necessary! 

Monday, 12 November 2012

Unbelievable!!

 
      Well, today was a super special day in the life of Jacob (and his family!!)  Jacob was quite irritable for a lengthy period of time this afternoon.  After trying different positions, different music, changing a diaper (which really didn't need to get changed,) and me holding him with little result, I decided to try the 'little room.'  Oh, the excitement.  The joy!  I placed him in the little room and instantly he quieted down!!  He remained totally still for about 30 seconds, when suddenly it came - a smile, then a bigger smile, then a bigger smile with a giggle!  I wondered if it was a fluke thing, because I've never seen such an instant reaction in the little room before.  But, for an hour, he cooed and giggled!  Every time he would hit the toys, he would giggle!  I watched with tears in my eyes!  He was responding (and accurately.)  Amazing!  Beautiful!
    

Jacob in The 'Little Room' this past summer.
      Considering we were told at the onset that we would possibly see no or little reaction from our little boy, we see this as nothing short of a miracle! 
      This occurrence sure lifted my spirits after struggling with different things lately.  A huge concern is still his weight.  We just can't seem to put any weight on him.  Since February, he hasn't been able to gain - he's only lost.  This brings major concerns as to why.  What is his brain signalling?  He keeps growing in length, so therefore he keeps getting thinner and thinner :( 

The girls are becoming better helpers with Jacob all the time.  This afternoon Sheryl wanted to hold Jacob while I was busy.  She's one who sees humour in many things - including some of Jacob's expressions.  Today, he expressed his tiredness once she cuddled him tight.  He was peacefully sleeping!  She was so excited about her accomplishment!  I love when they have a positive exprience with Jacob!  It was another situation to be thankful for! 
 

Thursday, 1 November 2012

Glad Halloween is Past!

   

     Halloween has always been my least favorite time of year! Halloween has seemed to take on such a gory, evil and haunted approach!  I’m beyond thankful that another Halloween season is behind us!

Last week, as I was walking down a store isle laden with Halloween paraphernalia, I felt sick and frustrated.  There were grave stones; making light of death. There were skulls, sights of the dead; again reminding us of the cold knuckly hand of death.  Daily we stare the reality of death in the face which is exhausting and heart retching. Not a day goes by where we are not faced with the reality that sooner or later, our boy will one day be in the grave (as we will be too.)  The fact that people mock with death – I simply don’t get it!  The store had limbs laced with blood - I've seen Jacob give enough blood, I don’t need to see blood again, let alone people joking with it. There were knives and scissors doing all sorts of evil things; knives and scissors in our lives mean surgeries, dressing changes, pain and suffering. I've seen enough pain and suffering from our little boy that I don't need to fake pain and death to enjoy myself!! 

It's been a tough pill to swallow as we go through town and the stores and see how much people delight in such festivities.  We see how much the forces of darkness fight against the Force of Light.  

    

Saturday, 27 October 2012

Bath Time

     Jacob still remains stable!  He's over the respiratory bug he had and off oxygen!  In so many ways we have reason to give thanks!!  I've been living with so much thankfulness lately for the many blessings which I have day by day.   It's so easy to take them for granted!
   
     As I was thinking about our life situation, in light of Paul's birthday, it made me extremely thankful that we could still be together as a family.  That God has spared all of our lives to this point is amazing.   We so often think that Jacob's life will be short, yet it doesn't mean that Jacob will be the first to meet his Maker!   We all need God's protection and guidance each and every day.  He has blessed us beyond what we deserve! 

     Yesterday our Physiotherapist and Occupational Therapist came to work (play) with Jacob.  They first like to hear the latest regarding his health, and then they get into his physical being.  They've helped Jacob out so much, it's amazing!  We have a great team!  They brought a bath seat for him to try.  Well, even though he can't speak, he sure gets his thoughts out at times.  This time was a prime example!  He enjoyed the water and the bath seat, with us having NO doubts!  It's great to be able to try things out like a bath seat, because we never know how Jacob is going to handle it.  If he really enjoys it, then we can buy it.   (I'm thinking a bath seat is going to be a necessity, by the looks of the success.)
 


     We've started to accumulate sensory toys to transform Jacob's room into a sensory room.  It's been something I've wanted for a long time.  A room where it's quiet, accompanied with soothing music, darkened with lighting toys which he responds to.  To find things that soothe Jacob is super rewarding.   I'll upload pictures as things progress. 
   
    One major element of concern lately has been his weight.  He's had substantial weight loss :(  The feeding team has upped his calories, but it hasn't seemed to have a positive effect yet.  I hope so much that things will reverse and we'll see him grow in length AND weight, not only in length.
Sheryl spent some time with her brother a couple days ago when was quite irritable.  It's amazing when we see the kids wanting to spend time with Jacob when he's irritable.  It can be very difficult to soothe him. 
This time, her love seemed to be what he needed because he fell into a deep sleep.  Beautiful! 
 

Tuesday, 16 October 2012

Update

      Things around the home front here have been somewhat uneventful.  In our lives that is a positive thing!!  Jacob is requiring less oxygen than a week ago, so we feel his lungs are in the healing process.  
      Things with Jacob always seem to somewhat change.  Very seldom do we notice that things are staying exactly the same.  We're so often faced with a new development and trying to decipher if it's something to be concerned about or not.  Jacob has developed a new breathing sound, which we'll have to get checked out, as it only seems to be getting worse.   We can tell that at times it hurts him - to have discomfort breathing is constant discomfort.  He suffers so much!!
     On a positive note, we visited the snoezelen room again :)  I love that place.  Jacob responded so well with the bubble column.  I had him positioned about 8 - 10 inches away from it, and he kept fixing his eyes on it.   He would fix his eyes on the column for anywhere from 2 - 10 seconds then lose it.  Within seconds he would find it again.    It was thrilling.    The room was very dark, so he had no other visual distractions.  It seems like there is something with his vision that we can work with.

Bubble Column with changing colours

Jacob with crystal clear eyes looking at the bubble column.  Indeed a great break through!
At one of the homes that Jacob goes regularly, they really work with development.  They experimented this time with a toy that looks similar to this on.  After consulting our therapists, they gave some instructions and away I went - buying all sorts of sensory items.  He LOVES it!  When he is content and fully awake, he responds beautifully with it.  I just have to buy more bright, glittery objects, as that seems to be what he visually responds to.  We have some noisy 'toys', hoping that he will learn that it is a positive thing to move. 
     Yesterday I was busy with Sheryl when suddenly Jacob become quite irritable.  We don't like to leave him like that, because it backfires so quickly.  I asked Breanne to tend with him, which she willingly did.  I came into the room several minutes later to this sight - Breanne doing chest physio on her brother.  It melted my heart.  She knows he loves chest physio and has watched us do it repeatedly, so she thought she could do it too.  She did an amazing job.  She's such a huge help!
 
     With Jacob we have fun with certain things, like when he frowns exactly when we are talking about something that's really serious.   Sunday night Paul asked me who our nurse was that night.  I replyed, 'Jennifer, she gets to play with Jacob again.'  Right as I was saying that, Jacob giggled so hard.  We laughed right along with him.  I had to tell the nurse that, she was thrilled.  Sweet moments.  Those are the moments that enable us to carry on with a lighter heart.

Friday, 5 October 2012

Off to Respite

      With many mixed emotions, Jacob went to respite today in London.  This was tough, as he's just getting over his pneumonia.  My mother heart wants him home and safe with our care.  It is unrealistic though, as that means we would have to watch him 6 nights in October.  Considering his sleep routine is so unpredictable, it would be unfair to the whole family.  I'm fairly certain my husband and children would not be getting proper treatment with me getting such little sleep, so often. 
     
While driving to the hospital I was thinking about respite and what it means to us as a family.  Here are some concluding thoughts:

- it allows Paul and I much more time with our other kids, which is something that they don't take for granted
- I can help the children more with their chores
- it gives us much more privacy in the home for the whole family
- I don't have to stay up to 11:00pm :) to give a report to the nurses
- it allows me to work outside
- it gives me the flexibility to bake and cook with much more ease, not fearing when I have to leave it immediately to tend with Jacob
- it gives the flexibility to catch up on many over due appointments (dentist, doctor etc)
- it allows us to visit (and have company here) much more easily and even have a Thanksgiving dinner without one of us having to stay home because a niece or nephew has a common cold
- it reinforces how much I (we)love Jacob!!  When he is gone, the stress is drastically reduced, yet many times it's just eerie quiet when he's gone
- we can go about in the house and do our normal chores without the fear of waking up Jacob
- I have to set my alarm clock for the school mornings, as the nurses are not my alarm clock
- we can go to church as a family :)
- I often wonder how Jacob is doing at respite - when I hear that he is irritable, I just want to pick him up and bring him home


Here are some pictures from our last hospital stay.  Looking at these, I'm beyond thankful to be home!
Danielle, our fabulous enteral feeding nurse practitioner!
I'm afraid she's had to deal with our worst moments with Jacob. 
We greatly value her advice and patience!

Jacob having an alert and content time

One of the nurses doing chest physio.  He LOVES chest physio! 
It produced amazing results regarding his lung issues.

Monday, 1 October 2012

Reflections


      We got the go-ahead to come home this morning from the hospital :)  Jacob currently is somewhat stable, basically needing very close monitoring for a while.  He's on oxygen, but last time he had pneumonia, he was also on oxygen for several weeks after.   Paul and I had to learn how to deep suction (suctioning down the nose into his airway,) seeing that Jacob is now requiring that every now and then.  That sure was a big step for me, but I did it.  It's never nice 'practicing' such procedures on our own flesh and blood!   We're really hoping that he's not going to need it much, as it doesn't take much and these kids to become dependent on it.  Yikes.
     
      Yesterday, Jacob reached the 18 month milestone!  To us that is HUGE!!!  We've been so blessed.  Even though we were in the hospital, with not such a healthy boy, I was still feeling abundantly thankful.  It could be a lot worse.
 
     Here's a poem that summerizes our past 18 months with our dear son. 

When I look over the past days,
I see we’ve been brought upon many different ways.
Many times we feared the worst,
Especially at the first.

Those first days, so helpless we were,
In our head, things were a blur.
There were parts mis-formed in his brain,
The road was going to be tough, that was plain.

‘Jacob will tell his own story,’ we were told,
‘We’ll all have to see how the future will unfold.’
5 to 15 months is life expectancy,
We had to trust in God especially.

We were disappointed bottle feeding didn’t work out.
We had to go a much dreaded g-tube feeding route.
Formula's, syringes, pumps and rates were all learned,
Nursing and bottling had to be forever adjourned.

We were discharged at 6 weeks,
With a growing boy with healthy cheeks.
He cried, choked and gagged the whole way home,
Our journey continued to be wearisome.

Uncertainty faced us many a day,
It taught us to continually pray.
When we didn’t know what way to turn,
God would lead us directly from His word.

Up and down we went all night,
As he’d never sleep super tight.
Night nurses were added to his regime,
Things improved greatly for the most, it seemed.

Many, many appointments were attended,
Good and sad news usually blended.
We never looked at Jacob as experimental research material,
Only things for his health we saw as beneficial.

18 months we can gratefully reflect on,
So quickly the time has come and gone.
With so many discouragements,
Regarding the physical assessments.

Even though the brain is regressing
To dwell on such facts is simply depressing.
We’ll hope the regression is slow,
‘Cause there’s no way to assuredly know.

In and out the hospital with lung issues,
Simply because the lacking of brain tissues.
Respiratory distress is no fun,
Every time antibiotics were begun.

Indeed, at times the ways been rewarding,
Especially the smiles have been a blessing.
Those smiles and giggles we never thought we’d see,
It brought us so much glee.

As we face the uncertain future,
As a whole it seems so unsure.
God continues to be faithful,
Whether our road is joyful or painful.

We love our little boy more than words can say.
So much more with every passing day.

 

 

 

 

 

Wednesday, 26 September 2012

Hospital Reunion

What do you get when you have:
- a fever
- vomiting water-like substance
- high heart rate
- seizures
- laboured breathing
- cold legs and feet (that wouldn't warm up being wrapped in blankets, unless the blankets were very warm)?

      That's what Paul and I faced on Monday night.  We knew things weren't well, but did we really want to run to emerg and expose Jacob to a whole host of other bugs?! We had a nurse come to the house and assess him, but she was most comfortable with us going to London to have the doctors look over him.  So off to London Paul and I went.
      The conclusion was that Jacob has a bacterial pneumonia and possibly a viral infection.  We are still waiting for results from the viral swab.  The viral infection is probably just a common cold.  This reinforces that we must be vigilant with only having healthy people in our house.  It's so easy to think 'oh, I just have a slight cough,' but with Jacob there is no such thing as a common cold!  We've thought that many times!  He gets seriously sick, extremely quick. 
      Currently, Jacob seems to be stable, and gaining strength, but still with continued concern.  His lungs are still full!!  After many hours of chest physio, his lungs have made no great improvement.  It seems to us that his brain is having a harder time signalling him to cough :(  It's like he will take the breath in to cough, then his brain stops it.  He needs to get what's in his lungs out!!  This may be a long recovery road again. 
     We've met interesting people with interesting stories!  I LOVE hearing other parents stories.  It shows us that we do not have it the roughest, and we're not the only people with a sick child!!  Above all, we know that God has never made one mistake dealing with us, and he loving gives us what we need.  That's a continual comfort!  Many people do not have that comfort. 
    One interesting story was tonight after supper.  We were walking to the hospital from the Ronald McDonald house with another couple.  They quickly got talking about faith.  The father went on to say that on the way here, they saw a sign which said, 'Is God your spare tire, or your steering wheel.'  I'm not totally sure about the saying, but I know what they were meaning.   It really put things in perspective again.  Am I submissively putting God first? Am I following His will?  Or, am I only needing God when things get rough?  That dad, with that one sentence has sure got me thinking!! 

Thursday, 20 September 2012

Happy Days

     We are currently experiencing high moments with our little man :) He is overall, quite content. He's sleeping deeper at night, and actually will nap during the day (even if it's for 30 minutes, it's still a nap!) He's tolerating his feeds like a champ. No more vomiting, retching or gagging!! This is huge! All his receiving blankets are staying nicely folded in his room. We haven't experienced this in months.  I'm enjoying it immensely!

      Considering Jacob's condition, we're figuring things will change, but for now, we are feasting in his progress! We never thought we'd see days like this again.

     I truthfully feel that I don't deserve this time with Jacob. I've done nothing to deserve this! I've worried, wrongfully. I've complained, unjustifiably. I've been dejected, faithlessly. Yet, God in His abounding mercy is providing our family with happy days! Days in which we will always cherish!!

     Here is our most recent family picture. Special indeed! As extended families last June, we quickly had family pictures so we could have the memories of Jacob being part of the family captured on camera. Now, 15 months later, we are still capturing precious memories!!   Amazing.
   

         

Monday, 17 September 2012

EEG Results

     
At long last we received the results from Jacob's EEG. Lisa, our palliative care nurse was the one to break the news, 'Jacob's EEG came back with spikes (seizures.)' Silence. Deep thoughts. Finally I was able to speak, 'That's what we were expecting but...' Silence. 'Thanks so much for the information, Lisa.' That pretty much ended our call.  That’s all I needed to know...for a while. Lisa told me last Tuesday, but I had to sort out that info over the next week.

How to make sense of it? How could our boy be having seizures, but yet we see such positive signs? How could his brain be regressing, yet we see him progressing?  Is his brain really not able to stop those seizures any more?   Why didn't we see seizure before, considering one of the symtoms of PCH2 is seizure disorder?  I'm thankful that we didn't though!!

My mom came with me last Friday to see our paediatrician to talk about the results in detail. He explained that Jacob had increased irregular brain activity, leading to seizures. Indeed a sign of the brain deteriorating.  He prescribed a medication because last week he also had 2 seizures in one night. The first one was 40 minutes; the next was 1 hour 20 minutes. Jacob's history with seizure medications hasn't been a rosy one, so we'll see what happens with this med. It will take a couple weeks until he is at the full dose, so we won't have an accurate reading until then. Hopefully his body will be freed from the exhaustion and confusion which seizures produce.

Becky, our caring, sincere and thoughtful case manager called today to find out the results from our Dr Kerr trip on Friday. She is one who has had many ears filled with my wonderings, concerns, and questions. I love her patience and humor - when humor is needed:) She opened my eyes today to the reality that Jacob continues to go against the odds. He truly is continuing to write his own unique story. He does things which really perplex the medical field. He is a growing wonder.

On a very positive note, Jacob's feeds have been changed (for about the 27th time:) but this time it really seems to be in his favor. He's back up to being fed for 18 hours/day. This proves to be more of a challenge for us, because we are much more limited with him hooked up to a pump.  His concentration is greatly reduced, which seems to work much better for him. He's hardly gagging/retching/vomiting now.  For weeks, it was so bad, he could vomit every 5 minutes for hours on end :( Poor boy.  With Jacob's condition, things continually change, but for the time being we are going to feast on him feeding well.  The saying stands true 'Every cloud has a silver lining.' 

 

Wednesday, 12 September 2012

Nurse Jackie

  
Last January, one of our night nurses was shifting her work slightly, so we anticipated having her loving care over Jacob less in the future. Little did we know that the beginning of February she would suffer from a serious health issue, and would never be able to work (or play:) ) with Jacob again.

Yesterday, I was privileged to visit her at her home, with Jacob. She couldn't believe how long he has gotten and how much red hair he has. He was still fairly bald in January.

She was thrilled to actually be able to 'play' with him again. If I had to describe Jackie in one word, it would be 'energy.' She was abounding in energy for special needs children. She taught us many unique ways to care for Jacob. With so many years experience dealing with special needs, she sure came with a wealth of knowledge! When Jacob was awake in the night, she would sing non-stop to him. She also figured out that while doing range of motion he loves music. Suddenly, range of motion was no longer a drag - he actually enjoyed it! To this day, when I'm doing range of motion, I'm singing and trying to make it fun for him.   He usually responds positively.

I found it most amazing yesterday how Jacob responded to Jackie. He was full of smiles, coos and giggles!!    Many, many times he would give her big smiles.  Several times it looked like he was trying to focus on her.  For Jackie it was heart warming because in January he wasn't smiling, cooing or giggling yet.  Seeing him respond in such a positive way, makes me miss her and her care all that much more. She has been given an extra talent when it comes to dealing with special needs children.

Providentially God saw fit to have her come into our lives.  Considering that, I'm feeling so thankful!
 

Jackie playing 'Round and round the garden.'


Playing with his new ball from Jackie. 
She thought it would be best for Jacob to have a soft ball, considering he has a three year old brother!  Good thinking!! 

Monday, 10 September 2012

This and That


     We've been privileged to celebrate 2 anniversaries this summer.  My parents celebrated their 40th in July, and Paul's Opa and Oma celebrated their 60th last week.  Both are indeed great blessings!  Overall health and strength have been granted them thus far.  When I reflect on these occasions, I'm amazed at God's dealings with people.  His plan is perfect.  So many times I've thought that Jacob's life is coming to a close, but then we are able to celebrate yet another special occasion.  Even though Jacob is unaware of the occasion or situation, it is a blessing that we can have Jacob there with us.  Psalm 31:15 comes to mind -'My times are in thy hand.'  God's ways are higher than our ways.


Opa and Oma Boesterd with their great grandchildren
Opa and Oma Schmidt with their 12 grandchildren
Maria was our Sunday night nurse.  She was a quiet, thorough and compassionate nurse.  It was always a nice way to end our Sundays.  Her last shift was this past weekend, as she has schooling which is conflicting with her shift nursing:(  It was so hard to see her go.  She loved Jacob, and it came through every time she came.  She would come up with wonderful excuses just to cuddle him:)
We gave her a thank you card, which she said she wouldn't read until she got home, because it's not good to cry and drive.  I'm kinda thankful, because if she would've started crying, I would've followed suit, really easily.  Another chapter is closed.  Another tough experience!  Two in one week.  Paul keeps reminding me that God can provide more great nurses.  Good point, but hard to see sometimes. 


Maria cuddling a very content Jacob

      This past Saturday I was privileged to spend a day golfing with my 2 sisters.   It was part of the Oxford Reformed Christian School fund raising golf tournament.  We sure are no pros, but if there was a medal for the greatest time - I think we would've won!  It was great to get out and do something fun, something that is stress free (even better that our score was 'decent'.)  I came home very refreshed.  Sorry for no pictures, but I was unsure of the weather, so I didn't want to have my camera soaked.   Thankfully though, once we were golfing, we didn't have a drop of rain!!

     We are still awaiting the results from Jacob's EEG.  So frustrating.  It would be nice to know what the results are, so we can act accordingly.

     Stacey from the CNIB (Canadian National Institute for the Blind) has been working with Jacob over the past 9 months or so.  Stacey specializes in children under the age of 6, so she comes with a wealth of knowledge with kids Jacob's age.  One of the 'toys' she's let us borrow for the month is the 'little room.'  Typically when kids are in the little room, they feel secure and enjoy the environment.  Jacob moves his arms and legs a lot once he's in there, which typically he doesn't move often.  The object of the little room is to have repeated movements.  Hopefully with hitting the same toy, he'll get the connection that it is a positive experience to move.  We've worked with it for a bit and have adjusted the toys to suit his preference.  Anything too noisy or high pitched, he gets scared.  It is a joy to be able to place him somewhere and know he'll enjoy himself.  Not every time does it work, but most often he'll settle down for about 15-30 minutes.

Jacob enjoying his little room

 

 

Monday, 3 September 2012

She Left

     The day has finally arrived.  One we were preparing for, for several weeks.  After 14 months, our primary nurse, Kim, has left for 2 new jobs in London.  I understand her decision totally, but for our family, this is a tough pill to swallow!   She has been hired at the Children's hospital, which has been a dream she's had a long while.  I'm really hoping that we don't end up in the hospital any time soon, but if we do, it would be wonderful to have Kim's loving, gentle touch caring for our little boy. 
    
     Kim was a nurse who went the extra mile.  She absolutely loved Jacob - that showed every time she was here.   She was graced with compassion.   If any nurse had Jacob figured out, Kim was the one!  She understood his different cries, moans, groans and movements. 

      One fun thing about Kim was that she was a farmer:)  She grew up on a farm, so from the get go, we had something in common.  She loves her cows! 

      Kim's sense of humour made us all laugh.  Our kids grew to love Kim.  Through the summer, they haven't seen much of her, because they slept in most mornings.  During the last school year, quite often they would wake up and smiley (and yes, sometimes super pesty) Kim would greet them.  The girls LOVED her stories!!  So often during a day, the girls would suddenly remember a story she told them about when she was a girl, and they would start laughing.  I'm glad she wasn't one of my girls;)  She had 4 sisters, and I believe they really made things 'interesting' for their parents! 

     Kim has seen our high points, but also our low points!  She's seen us struggle, but she's also seen us rejoice.  She's been able to give advice, and she's had times when she was silent - no words were needed.   She's been by us when we thought we were going to lose our little boy, but she's also been by us when we were seeing those first smiles:)  She's also been privileged to see him giggle - just for her.  Special moments! 

     One area that Kim excelled in was the ability to be supportive to Paul and me.  We could tell that she understood what we were going through.  She wasn't just here for Jacob, but was here for the whole family.  She was unique in that way.  We'll miss that personal touch!!     

     A note was left on the table for Jacob, and one for the rest of us.  I'm glad she told us NOT to read them until she was gone.  There weren't too many dry eyes ready those letters.  We've known that it wasn't easy for her to go, but the letters proved that she had her heart in her work here.  We've been well taken care of with her here. 

      Paul keeps saying that God has been so gracious to bring a nurse like Kim into our lives.   I agree totally, but yet, to have a fantastic nurse, makes the departing that much more difficult.  
     
     

Saturday, 25 August 2012

'God At Work'

      'God At Work' is the title which was over our devotions a couple days ago.  In the morning, I'm reading through "Bridge to Esther" with the kids, from Rev. Vergunst.  It is geared for children, but as adults, there is something to glean every day.  The meditations are easy to understand and very practical.   
     
      We were studying about Esther when the decree went out to gather the maidens (Esther 2:8-9.)  Suggested further reading was Job 1.  It is a wonderful comparison. 
      
      On Thursday morning I felt like Rev. Vergunst wrote this meditation just for our little family.  Here is a little excerpt, 'I don't know what it happening in your life right now.  Maybe very sad things have happened or are happening as your read this...  But I do know that God is at work in everything that is happening or has happened to you.  We don't always know why God does what He does.  Esther had no idea why she was snatched from her home to become the queen of Persia.  Think of others in the bible: maybe Joseph was puzzled why God allowed him to be sold and later thrown in prison; David couldn't figure out why God was allowing Saul to try to kill him. 
 
       Later, Esther, Joseph and David could look back and see that it wasn't a puzzle after all.  It was a completely thought out and wise plan, which God Himself was working out step by step. 

       God doesn't ask us to make His plans better or suggest changes.  No; instead, our Creator God calls us to trust Him, even in the darkest events.  That's difficult, but not impossible!

       Faith is God's gift, and when God gives us faith, we can trust Him even in the middle of a storm.  Our extra reading this morning is from Job.  As you read what happened to him in one day, notice how beautifully Job ended that day.  He knew that God was at work.  He didn't know why God was doing it.  In some ways, he never found out, but he learned to trust Him.  Maybe that's what God is teaching you too!'

       Many times the last while I've asked 'why.'  I know there is a reason for everything, but at times it is difficult to see the answers.  I've wondered why we had to lose 3 nurses (2 absolutely fantastic nurses) in one week:(  I've wondered why we had to go through a large medication mistake.  I've wondered why Jacob has 'stuff' in his lungs almost every day, and showing no signs of improvement.  I've wondered if another medication is an answer.  I've wondered how his brain his progressing/regressing.  Through it all, we are called to have faith and trust God in ALL things.  May God give us peace and contentment day by day!
     

Tuesday, 21 August 2012

EEG

      During breakfast this morning I asked the girls if either of them wanted to come along to the hospital for Jacob's EEG.  They asked what was involved.  I explained that there is no blood, it is a painless procedure (well maybe except getting his head scrubbed to put every electrode on.) I then explained what they do to actually perform the test.  I didn't get very far when Breanne interrupted and said, 'I don't want to go.'  I laughed to myself.  She's so like me!  It's clearly out of her comfort zone.  Sheryl thought it sounded interesting, so she wanted to come.  I love having company, and will miss it, once they are gone to school:(  Sheryl was thrilled to push her brother through the hospital.  The entire time the technician was working with Jacob, Sheryl was fascinated. 
     
     An electroencephalogram (EEG) is a test to measure the electrical activity of the brain.  Jacob has had several of these since birth.  Every time they've done the test, the findings have indicated irregular brain activity.  There have been no seizures, but with so much irregular activity, it wouldn't be surprising if he had (or has) seizures. 

       Considering Jacob has had a few new mouth movements (which can be seizures,) and some  unstable moments, Dr Kerr decided it would be good to have another EEG.  Jacob did so well!! Actually, he loved it.  He was smiling and cooing while the technician was marking his head and placing the electrodes on his head.  Once she wrapped his head, he settled into a peaceful sleep.  I think a hat would be a good investment - or at least a roll of gauze:)
Jacob with all 24 electrodes on his head.

Once the electrodes were on and in place, they wrapped his head, to keep them from slipping all over. 
He looked so humorous.  He didn't mind at all! 

GOOEY!!  The red is marker that they marked his head with, so the electrodes would all be equally spaced apart.
After a thorough scrubbing, most of the marker and goop was out of his hair. 

      The procedure took about 45 - 60 minutes.   We were leaving the EEG room, when I thought it would be interesting to see who was working on the paediatrics 6th floor.  It was neat to be able to talk with the nurses, when Jacob was not at a low point.  The nurses love to see the children, other than during their hospital admissions. 

      On the way home, I was filled with thankfulness considering how well Jacob cooperated.  It will take about 1 week to get the results - I'm curious!!   

Thursday, 16 August 2012

Dr.'s Appointment

     When things are going rough, it's easier to focus on the negatives rather than the positives.  Today, even though we received very little encouraging results, we must look for the positives.  We have a paediatrician in St Thomas, who we feel very blessed to have.  Marije (our respite worker) came along to St Thomas, just in case Jacob needed help while I was driving.  Thankfully he calmed down both times several minutes into our trip.  Marije was very impressed with Dr Kerr!  Paul and I have always felt like God provided a paediatrician who understands Jacob, us, and our beliefs.  He is church going, and brings out things from the bible on a regular basis.  He has a lot of common sense, and takes what's in Jacob's best interest first.   We have much to be thankful for!!
     
     With Jacob's health, it's difficult to pinpoint exactly what's happening on the inside.  Several things were discussed...  first, his increased irritability.  In 2 1/2 days, he slept 6 hours (yes, that's day and night.)  Last night he finally slept ok when he slept 6 hours.  That's still not enough.  He didn't fall asleep today until 8:00pm.  He can't keep this up!! Even when he's awake, he's very restless.  So, the result... increase one medication he is already on.  Even though we've always been extremely cautious with any meds, we truly don't know what else to do.  I possibly can't hold him for 16 hours every day.
 
     One medication we could add to his regime acts as a sedative.  This is a scary step.  I'm not sure we are ready for that step yet.  We'll see what happens with the one medication being increased.  We need wisdom from above. 
 
     Jacob has been doing a lot of mouth/tongue movements, which is a newer development.  Dr Kerr is wondering if they are seizure related.  He has ordered another EEG, to monitor Jacob's brain activity.

     Last Saturday evening, Jacob had a time when he was asleep that his respiration's were very low (about 5 per minute), his colour was very pale, and I could hardly feel his pulse.  This lasted for about 20 minutes.  We were at a family gathering, so we kept it quiet that we were so concerned.  Paul was holding him, and was keeping a close eye on him (with my eyes and my mom's, not leaving him for long either.)  After the 20 minutes his coloured improved and his respirations increased.  He didn't wake up for hours though, plus he slept all night!!  Very concerning.  Dr Kerr was wondering if that was also something to do with a seizure.  It wouldn't be a surprise, seeing that he has constant irregular brain activity.  So far though, every EEG he's had, has just shown the irregular activity, but no seizures.  The doctors office was going to put it as a priority to have the test done.

    Also, the first part of the appointment is just a regular check - weight, length and head circumference.  Well, regarding his weight, he was up 200 grams, which the doctor was happy with.  That is over about 2 - 2 1/2 months.  The gain is small, but it's not a loss. 

      He is truly keeping up with his dutch genes to be tall, because he is still maxing the height growth chart.  That actually means he's getting thinner:( 

     One of the more important parts of the visit is his head circumference.  It doesn't tell us everything, but it helps us understand things somewhat better.   His head circumference didn't get any bigger since January.  That might explain why things are where they are -  his brain isn't growing.  Hopefully the brain cells aren't dying off!  Tough thoughts!!

     I wish I could make his brain better!!  I wish I could take away his pain and discomforts!  I wish we could all understand him clearly.  I wish he didn't have to be on half a pharmacy worth of medications.  Our road with Jacob just isn't going to be that way.  It goes totally against our humanly desires, but it's in God's perfect plan.  Jacob is so unwell, yet, is not tempted to sin as we are.  He is spared from so many temptations.  May God provide peace to Jacob's soul.  Even though on earth, he has so many discomforts and afflictions, God can give Jacob a soul that is at peace with his maker.  May that be our constant hope and light during these dark days.