Thursday, 13 June 2013

A Year of Growth

June 2012, just home!
Is it a bit ironic that one year ago today was our first real day at home after being discharged?  Who knew (I did) after spending our first 219 days in hospital that we'd be back again!  As predicted though (not that I really believed it at the time) that our hospital stays would get further apart as he got older and stronger.  It was hard to believe since we spent many a days back in the hospital through the summer but as I was told, he has gotten older, stronger and more resilient.  The fact that we went for almost 5 1/2 mths without being admitted is a huge feat (especially with how many times the big boys have been sick lately)!

June 2013, A year later...
Also as predicted, life has a way of catching up with me as I woke up with one heck of a stress headache this morning and a dry scratchy throat.  I knew B had Nurse Justine on with him again today so I felt confident in not needing to go in right away (it's very hard for me when he has a Nurse that doesn't know him) and to take care of myself.  I slept for another few hours after dropping off the kids at school but I had horrific nightmares the whole time...oh how you've gotta love stress!

Oh how this makes me laugh!  Nurse Breanna (Mr.B's first Nurse
ever on Unit 2), came to see B the last two days and both days he
was sound asleep!
Yup, those are urine collection containers (for g-tube
supplies) toys ever!
I woke up and realized that I hadn't heard the phone ring and the number was a hospital number.  I just love (hate) those moments of blind panic before you listen to what the message says instead what you think it will say.  The message was actually from our Geneticist, Dr. Thomas asking me to call her.  I called her back right away knowing she'd have the results of B's skin biopsy test that we did a month or so ago.  I had to laugh when she informed me that Braeden's skin biopsy had come back as 'normal'.  Normal is not a word in our vocabulary!  So Pallister Killian is off the table and she sounded a bit disappointed that she didn't have an answer for us.  She hasn't heard yet on any further funding for any additional syndromes to test B for but in reality I don't care.  Maybe I should?  Maybe a 'label' for B would be nice?  I really don't care.  I might change my mind I suppose as he grows older but I just love who he is.  He is simply our unique boy who has so much love in his heart and shows other people how to love him.  We already know that his 'condition' (truly for lack of a better word) is extremely rare (or doesn't exist) and that we are continually blessed just for having him in our lives.  He has 'Braeden Syndrome' (Mr.B syndrome?), he is who he is.

Nurse Malaika by for a smile!
When I did arrive here (ACH) I did find out that Mr.B had been a heck of a stinker this morning and gave Justine a run for her money.  He woke up (after sleeping ALL NIGHT) miserable and it just proceeded to get worse.  Justine told me he screamed and was inconsolable for over 40 mins.  (Maybe that's why I was having my nightmares?)  I felt badly for Mr.B certainly but worse for Justine that he was so sad.  The concern of course was that he'd also started his new formula at 6am this morning and was he waking with stomach pains?  He had a good retching episode for her as well and got vented and eventually settled down to his 'happy' self.  Aside from this morning's drama he seems to be tolerating the new feed just fine.  He's gagged for me a few times but certainly no other retching thus far.

I am confident that the plan to get him onto bolus feeds tomorrow is a good one and am still hoping he'll be home in time for Father's Day this weekend. 

Tonight I am again searching out that balance as I go to stand on the wet, mosquito ridden grass of the soccer field to watch Ry's last game!

From Our Home (Hospital Room) To Yours...

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