Friday, 6 September 2013

We're Back

It's sure been a while since I've actually took the time to write.  There's not a day that goes by that I'm not 'writing' in my head.

Jacob has continued on in different ways.  Ways that confuse us, ways that uplift our spirits, ways that concern us, ways that uphold us, and many ways that are continually teaching us.  His journey is teaching us patience and trust!!  It's hard when I'm the type of person who wants to know why and how.  Jacob's life basically doesn't include why and how. 

Yesterday marked our seven month milestone since Jacob's last pneumonia (and 10 months since our last hospital admission!!) .  That's amazing beyond words.  Seven months ago we were mentally preparing (as much as that's possible) for a funeral and now seven months later with few significant changes.  Some of these changes have been happening at a quicker rate it seems lately, but nothing that is causing the doctors to get really concerned.  Most of the changes can be hard to diagnose 'why'.  I have to be content with little or no answers.   The doctors at times don't know and dislike having to tell us, 'I don't know.'  Time will only tell!

We're seeing much more stiffness with an increase in jittery, jarring behaviour.  It seems to be getting worse in the last month or so.  It looks like he gets scared really easy.  Even just a slight position change can send him over the edge.  What's going on in the brain would be so nice to know (or maybe not.)

Last week we were able to have a high moment and I mean a really high moment (or should I say - moments.)  We had one of our night nurses, Andrea, here for a day shift.  Breanne and Andrea were talking to Jacob when suddenly he did it - he giggled and giggled.  I came storming to the scene to hear those priceless giggles and to actually witness him smiling in response.  Simply breathtaking.  We were able to capture some of his giggles on video and his most beautiful smile on camera.  It's been half a year since we've seen a smile or heard his giggle.  He can have a really content look on his face often, but never has it been a full smile.  I totally understood how a giggle or smile could get us through the day.  I sure had a bounce in my step the rest of the day.
Andrea holding Jacob and thoroughly enjoying his giggles.
  Yesterday he was using his vocal cords a lot, but in a different way - crying.  When I picked him up at respite yesterday he was hoarse sounding, but the doctor was quite sure it was from a strong crying spell he had earlier on in the morning.  Well, he's still hoarse when he cries, and it's not going to heal the way that he's been crying today.  What a change.  Hopefully he's not coming down with something!

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