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!

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! 

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! 
 

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.  

    

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! 

 

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.

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.