Saturday, 6 July 2013

Anxiety and Trust Go Hand In Hand

Lil' Buckaroo

The Calgary Stampede is up and running, how is that even possible when the City was in a State of Emergency not even two weeks ago?  A huge amount of hard working people and spirit.  The boys got to go to a 'small parade' at ACH the other day with Grandma, Pappa and Ashley.  ACH has a few of the floats and parade participants come and do a mini parade for those families that are currently at ACH or are unable to attend the full scaled event due to medical limitations.  The boys had a blast and I'm told Mr.B loved it all but the noise level.

I have to say that the parade set a milestone for me...a huge, massive, epic one that required an Ativan for a panic I watched Braeden go off in the van with everyone else, leaving Momma at home for a meeting (which I'll talk about later).  I've never had anyone or been comfortable with anyone taking Mr.B out without me.  It was a HUGE stress for me to let it happen but also a HUGE accomplishment that we both (B and I) survived.  It is very, very difficult to have that level of trust that B will be tended to properly and be safe (being knowledgeable to watch his breathing and for retching).  I think part of me was able to let it happen simply because they were going to be at ACH for the's not like there weren't at least 100 medical personnel at close proximity (but it was still terrifying for me).  I don't know how soon other ventures will happen as there aren't many people comfortable with B's complexities and I'm not too sure how much my anxiety could handle either!  It is the first HUGE (think I said that already) step though!


Lots of giggles
We've got a bit of a sad house this morning as we had to wave goodbye to Grandma and Pappa as they started their way back to Vancouver.  As much as we love our life in Calgary it is certainly hard to have family so far away.  Thankfully we have family that also likes to come out and visit!

Snuggles with Grandma Jean
It is amazing how a week and a half can just fly by and all the things I'd intended to do since I had extra hands around remains untouched for the most part!  I love that I have great intentions...I always seem to think since I'll have extra people around that I'll finally get my house organized (caught up, etc.) but I think it's time to realize that I'm somewhat delusional!  What I did do though is take some naps!  That was a productive use of time, the rest just has to wait.  I do have to say that I did get all of my FSCD paperwork up to date.  It is a very long, drawn out process to complete even one month worth of Disability paperwork, times two kids (but I am still thankful that we even have it, the funding not the paperwork).  I tend to not get to it monthly so when it is a few months to do at a time it is very time consuming and overwhelming.  Once upon a time I was an organized (ok, slightly more organized) person but my time when I'm fully competent (serious lack of sleep) is at a minimum these days!

Hard to be a Cowboys when hats get in the
way of doors and walls!
Mr.B is plugging along but still really not able to tolerate a change in his feeds.  I tried going up by 10mls/hr yesterday and he retched right at the end of his feed, unable to handle the last bit of change.  It is frustrating from the sense that we went from being able to complete feeds successfully that were more than twice the size he takes now AND that there is really no reason for the change.  I know I need to just bide my time until surgery in a few weeks but I also miss the freedom of only 4 feeds a day.  The night time feeds are certainly taking their toll as well but I don't see how I can be more tired, it's not like I was getting stellar sleep before.

Daydreaming out the window
One good thing is that B isn't having his clusters of Night Terrors (for the past week we've been home) but he is very unsettled at night.  I am wondering if it is due to the overnight feeds but there was no report of it while he was in hospital.  It is just so hard to know what is physiological and what is possibly neurological.  I guess if his Dr's can't figure that part out I'm not going to either.  All I need now is an overnight Nanny...once I win that lottery that is!

How one little boy who sleeps so little at night can be so darn happy and loving during the day is beyond me!  I try to take that lesson from him but I'm still a pretty grumpy Momma some days with my lack of sleep (as I'm sure those of you around me can contest to!).

Finger 'death grip'
Braeden is seemingly getting physically stronger each day, he is just itching to catch those big brothers of his.  He is doing more short spurts of crawling forward and is getting better at holding himself up with the window frame to hold on to.  It's only a matter of time before he's pulling himself up now.  He's already making the motions of doing it himself and he loves to just sit (kneel with a death grip with his fingers) and gaze out his bedroom window.  I can't wait for the day when I get that baby hand on my leg wanting up as I'm standing in the kitchen (or wherever)!  The ironic thing is that it seems like the stronger/faster he's moving the more pronounced his spinal curve is getting.  It is astounding how children find ways to compensate for weak muscles elsewhere and don't let something like mild cerebral palsy hold them back!

So!  My exciting news!  I mentioned awhile back that I'd been referred by the ACH's Manager of the NICU to become part of a Parental Advisory group for Alberta Health.  I'm so very excited for this opportunity as it will be as a Parent/Patient Advisor with the Critical Care Operational Clinical Network (sounds impressive right?!).  The role would be to " play an active role in helping to improve the experience, quality and safety of patient care. Alberta Health Services value patient and family perspectives and is committed to enhancing patient experiences at all levels of care".  

I am honoured that they've considered me for the position and I am going to sit in on their next meeting so that I can see how the process goes and I can make the final decision if it (the position) will work in my life or not.  There is so much potential and growth with being a part of the Health Network(s)!  If I can somehow assist in making another families experiences smoother, simpler or even mildly less stressful then it will be worth it.  What I really get to do is voice my opinion and talk all about Mr.B...shouldn't be too much of a stretch I think!
Cowboy Siesta!


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