Tuesday, 9 July 2013

Ocean, Dreams and Funny Faces

The plans are falling into place...we might (might because my life isn't exactly a page by page book) go WEST in one week!  The West Coast is calling to me and I SO want to dip Mr.B's toesies in ocean!

The ocean is so very meaningful in my life as I spent the majority of my childhood, teens and young adulthood only minutes from the water.  I miss it terribly (but not the rain) and the mountains that go with the Vancouver skyline!  I find the ocean cathartic and it has always been a physical and mental healing power for me.  I can't count the number of times that I've needed to think and have just sat on the beach to do just that.  I have seen what the ocean does to Torin, he feels it too and I know Ry can't be that far behind.  Which is why I feel such a strong urge to show it to B...I just have this innate sense that he too will 'feel' it.

One of my closest and most wonderfulest (yes, it is now a word) Friends in this world, that I've now known for 35 years this fall, has a Condo right on Parksville beach on Vancouver Island and we'll be able to stay there for a few days.  I'm just itching to go now!
Yes, it is going to be hard and yes, it will be stressful...but it is a good hard and a good stress (I hope).  I've had people question me (out of love) and I've really thought it through.  I've already got plans B, C and D if needed and I'm no ones timeline but ours. 

I asked B's Pediatrician yesterday if she thought I was nuts (don't worry, she already knows the truth!) and she didn't hesitate and said to me, "You need to live your life...GO!"  She even went so far as to write me a letter to have on hand that basically says to any Dr that I present it to that "Mom knows what she's talking about and if she says B's sick, he's sick!"  How awesome is that?  I feel honoured she's got that much faith in me!  She's been with us since T was 4 (she was the one that diagnosed T with Autism) so she's got a pretty good picture of me.

My plans aren't 100% yet, I'm not completely certain who is driving out with me but my Mom is for sure driving back with us.  I would love to be able to connect with people and introduce you to B but you might just have to come to us!  I'm also planning to have another adult on hand if things go south. 

Hangin' on the couch

Michael and I discussed it and he feels that the possible negatives don't outweigh the positives of going and yes, we need to live our lives!

It's hard not to tell the big boys, they will be beside themselves when I tell them (with a 5am wake up call the morning we leave and not a moment sooner so shhh!).  I'm still not convinced it will all come together and B will stay as healthy as possible until then but I have high hopes.

Crawling break
We have our second Oxsymmetry overnight test on Monday and a follow up with Respiratory the next day to see Mr.B's oxygen results.  We will have a good idea if his oxygenation levels are holding or not or if he needs to be back on at night or not.  I am feeling very confident that he's doing well off of it and was reassured today when his RT and Homecare Nurse were here doing a home check and he screamed his head off at them (guess we didn't get past that medical professional aversion yet...).  He was screaming and crying and was still maintaining a 97%...he's amazing!!!  Of course I felt horrible for Luci and Shawnee for getting screamed at and not getting 'happy' B snuggles and smiles anymore though!

B also had his first Stampede Pancake Breakfast today!  For those of you that aren't from Calgary (or aren't familiar with Stampede), it is a week long celebration that comes with FREE pancake breakfasts all over the city each day for 10 days straight.  It's a tradition and today B got to share in that, now it is my hope that one day he'll be able to EAT some of it!

The other celebration we got to be a part of this week was a Birthday party for Miss Kinley who turned 2.  I was honoured to be invited to the party and it was great to see so many ACH Mom's in one spot.  Kinley and B were across-the-hall neighbours for most of B's first Unit 2 stay and Kinley still resides there.  She is a precious gift and blessing, "Happy Birthday Sweet Girl!"

(The only downside to going was that B was a bit traumatized that I took him back to Unit 2 (remember we've only been out a week) as I think he thought I was going to leave him there!  Poor kiddo!)

Mr.B's 'funny face'...oh how he makes me laugh!  The video of the
game is on our FB page!
As far as Mr.B's feeds go, I've decided not to push his feeds any further then we've already done and will keep with the night time feeds until surgery in August. It just seems easier.

We've also got our next Blood Drive happening this Saturday at 9 am and we are still looking for more donors if anyone is available message me on B's facebook page.

For now we are planning and enjoying the gorgeous summer weather as B can't get enough of being outside! 

The exhausted pose...too much crawling!

From Our Home To Yours...

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