Tuesday, 16 April 2013

Another Plateau

It seems to us that Jacob has reached a new plateau.  For the past week and half or so, he hasn't shown us any new developments (all things considering, that's a positive.) 

When Jacob was just a couple weeks old, we had a meeting with Lisa, the Palliative Care Nurse Practitioner (her actual title is Symptom Management and Supportive Care.)  I had little understanding why we needed to meet with someone in symptom management and supportive care.  It was told us from the Medical Team that it would be beneficial for us.  Wow, were they ever right.  She drew the following diagram during that first meeting. 
A diagram I will never forget.  We were told 'Jacob will plateau, then regress, plateau, then regress again.  Some plateaus will last longer than others.  Some regressions will take place rapidly.  We're unsure of how many plateaus Jacob will have.  We're all hoping the plateau's are long.'  I can still hear the words in my ears.  For the past half a year we haven't seen progress, only regression.  (One amazing fact though is that Jacob actually did have small progress during his second year of life.)  Thankfully he's plateaued again.
There sure seems to be no light at the end of the tunnel if we keep our focus on Jacob and his condition. What a sad lot.  Yet, there is a bright side.  Oh, for him to see His Maker in perfection.  To be rid of all his weaknesses and pains.  Forever!

This past Saturday we were privileged to have Jacob's pictures taken by a photographer who is affiliated with Helping Hearts.  It is an organization which captures the precious moments with special needs children and their families.  The photographer was simply amazing.  I'll post some pictures once we have them :)  Yes, I'm super eager to see them.  What a blessing to be able to take 2 year pictures!

Here's some odds and ends from the past 2 weeks.

Julie, one of Jacob's snuggle partners at the respite home! 

What a unique way to sleep. That would be our Jacob :)  Super fussy one minute, then all slumped over and fast asleep.  I love his red hair!

Exploring in the high chair.  It's super fun to have him as part of the family during meal times.

The end result of happy stimulation.