Blog Troubles :(

I've been experiencing blog issues.  It's extremely frustrating, yet things like this also happen for a reason.  All the problems we've had with the blog is the reason why it's been so long since the last update.  Hopefully things can be sorted out soon, because I have a fun update in mind.

Jacob is doing ok nowadays.  His lungs are clear sometimes and congested or wheezy at other times.  It's so hard to figure out.  Every day continues to be different.  His sleeping is improved with the increased dosage of the sleeping med.  At least he is responding to it as is expected:)  On a typical day, he gets 2 doses, but he's allowed up to 4.  As we continue to move through cold/flu season it brings many added concerns and stresses.  How much do we keep him isolated, and keep the family in two?  We can't always keep him home when there is an event, yet it brings so much extra stress to bring him to birthday get-togethers and the like. 

Every day we are given him, we count as a blessing!  Words can not express how thankful we are that we are still able to experience the highs and lows with our little man!


 

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!!

    
     

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!!

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. :)    

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!!!

   

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. ♥

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!