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.

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.