|Some Araya lovin'!|
I'm also embarking on a brand new adventure, I'm trying to take care of myself! It's a bit of a shock to the system, but hey, at least I'm trying!
|Doing some physio, heavy lifting!|
We are officially one month free of an admission!!! Yahoo! It feels as though it's been an non-stop, ongoing admission after admission since June. I think we ended up with 10 in all in the last 7 mths which is nuts! We've been just enjoying life at home (although of course we are still at ACH multiple times a week for appointments).
The second half of January was big month for us with
|I'm STANDING!!!!! This is HUGE!!!!!|
|Crammed between a purse and a feeding tube bag...but I'm sitting in a cart!!|
|Working hard in my standing frame!|
We also saw the Eye Surgeon in January for our surgery follow-up to which we got (dripping with acidic sarcasm) the news that he'd need a second eye surgery. Wow, shocker. I enquired again to why he didn't do the 'other' procedure (that I swear we discussed) instead of this one that he did do but he again reassured (not) me that the other surgery (that he now needs!!!) is only ever a 'Plan B' surgery. SIGH. I am in NO rush to get another eye surgery for him as long as his left eye stays open as much as it does and the vision doesn't start to get affected or the eye gets 'lazy'. So very frustrating. Of all the times I didn't have a second person in the initial consult with me...
|This picture now holds even more meaning and emotion for me...|
We did make it through most of the talk without too many tears although I certainly teared up on more than one occasion. Patient and Family Centred Care has become a burning passion of mine, it needs to be heard and it needs to be put first and foremost in our medical system. It is the reason why I sit on the Networks with Alberta Health Systems that I do, I am driven to try to make a difference for all the families that will follow in similar footsteps to ours.
I'm very blessed as well to have been asked by Trish to speak in March to a group of NICU Nurses again about this topic. Trish and I will again present as a pair and talk about our journey with Mr.B in the NICU.
We also got to go out and put in the donations that Torin collected for his 9th Birthday for Alberta Children's Hospital. I'm SO proud of both of my boys for their willingness to raise money for something that they both feel is important!
There are a couple of important things happening this week around the world as well. This week is not only Congenital Heart Defect Awareness but also Feeding Tube Awareness. Well since B has both (and both are life threatening/saving issues for him) we decided to go all out and do a Rockin' photo shoot to raise awareness. We also created a short video vinette for TinySuperheroes (the makers of the AMAZING red cape you see in the shots) to raise awareness for CHD as well as a photo contest for Mended Little Hearts (click HERE to vote). Justine and I had a great deal of fun getting B's haircut into a Mohawk (as you can see he wasn't thrilled) and spraying it red. These are photos that I'll cherish for all time! I had to include so many because there are just so many to choose from!
|Not happy about this haircut thing!!|
The other part of reflection that has come for me is that we just finished our Radiothon for ACH this past week. The people of Calgary (this GREAT city) and surrounding areas of Alberta raised over 1.95 MILLION dollars in the three day Radiothon. That means more state of the art equipment for our amazing hospital among other things. It was a different experience being on the 'outside' of it this year (we were a part of it last year) but wonderful with hearing other's stories that we've gotten to know. It is a three day cry-a-thon for me but it is empowering as well! I am thankful for so many things but being Canadian, being Albertan (I was actually born in Calgary although I grew up on the West Coast for the most part) and living in this great city of Calgary with the best care in the world only a 10 minute drive away from us.
From Our Home To Yours...