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| "Trachieosaurus" shirt from StomaStoma // Hair bows c/o AB Bows Handmade |
On the surface things have been relatively calm and even “serene”, but it has remained quite busy and somewhat “go-go-go” behind the scenes. Most of it involves getting some things in place for Evanna as we leave the first quarter of this year behind and make some plans for the rest of summer leading into fall.
In respect to Nick and I, we are
currently just putting the “finishing touches” on our legal basement suite and will hopefully have an ad posted and the suite rented
out before the end of April. This project has eaten up most of our free time
over the past few months (especially for Nick, I can’t emphasize
enough how hard he’s been working to complete this project), so it’ll be nice
to finally have to time to focus on more personal projects such as building the
rest of our fence and do some landscaping in May, and even tackle some interior
design ideas that I’ve been dreaming up since the day we moved in.
In regards to Evanna, we’ve been able
to make a few small positive changes such as discontinue a few more medications
in March and work on transitioning her from her standing frame to the walker.
With medications, she’s on just iron, aspirin + Vitamin D – essentially all
supplements and just quite an amazing feat in my opinion. The transition to the
walker has been going okay, but I don’t think she quite understands the freedom
it gives her and hasn’t realized the walker’s full potential…. but I’m confident
in time that will come.
We also had an intake assessment with
an organization here in Calgary called GRIT to send in Evanna’s application for
PUF funding from the province that will provide early intervention services to
help integrate Evanna into the school system over the next 3 years.
“Alberta Education provides Program Unit Funding (PUF) to
support the educational needs of children with a severe developmental
disability or delay. Children who are at least 2 ½ years of age and less than 6
years of age on September 1 are eligible. The funding is used to support
children’s participation and learning in early childhood programs.”
Evanna qualifies for the full 3 years
(the first year or two will definitely be home-based), and due to her age, will
start this fall! I was a little apprehensive about the whole process and feel
like Evanna is too young/not ready – but we’ve been reassured that Evanna is
definitely ready and will benefit so much from this program. We chose to go
with GRIT (as there are a few several organizations to choose from) based on
all the favorable recommendations from fellow medical families that I am
acquainted with and our primary trach nurse from the Complex Airway Clinic who
noted that GRIT was the most experience with medically complex kids –
especially those with trachs. So based on that, I didn’t really bother (nor
waste precious time) looking into other organizations and immediately set up an
intake assessment with GRIT at the end of February. The two ladies that came to
perform the intake assessment fell head-over-heels for Evanna and just thought
she was the most precious thing ever. They were ecstatic about our potential
acceptance into their program and made several comments about how well she’s
going to do over the next 3 years and all the progress they’re anticipating
she’ll to make. Once the PUFF funding is in place, GRIT will hire someone to
work with Evanna around June, and the program will officially begin in
September -- as it follows the regular CBE (Calgary Board of Education) school
schedule (essentially it’s “early intervention preschool”). At the moment it’s
been eluded that we will start out with 4 days per week, and because Evanna’s a
“morning person”, has been signed up for a morning program.
----------------------------
in other news ----------------------------
For the 4th year in a row, Evanna’s
medical needs is somewhat trumping our anniversary once again
–
[April 2014] 37+ weeks pregnant and
moved into the Ronald McDonald House up in Edmonton
[April 2015] Evanna hitting 184 days
in the ICU and yet, not at the halfway point when all said and done
[April 2016] Evanna’s emergency
debridement sternotomy surgery
[April 2017] bronchoscopy procedure
…. so we decided to celebrate our 5th
anniversary a little early this year and keep it simple (per Nick’s request)
since we just went away to Lake Louise back in February
and have another small trip planned for this June. It’s our 5th wedding
anniversary this year, and we had always talked about going to Las Vegas to
mark this particular milestone (it’s where we had gotten engaged),
but such is life and unfortunately that trip will have to wait until a more
appropriate time. While this is something I would have been upset about several
years ago, I’ve learned there are more important things in life and “it is what
it is”.
So last Thursday we booked one of our
nurses for a day shift to watch Evanna, and Nick and I went and got brunch from
a place that I had been wanting to try out for quite some time (I consider
myself a “wannabe foodie” lol) at a place called The Bro'kin Yolk on the North side of Calgary.
We took the time to talk about everything we’ve accomplished over the past 5
years and how far we’ve come as a couple. We’ve crushed almost all the goals we
set for ourselves and were able to take a moment to marvel at all our hard
work. We tried to talk about what the next 5 years will look like, and while
there were a few things we see happening, there are currently a lot of balls in
the air (…. and yes, most of that has to do with Evanna lol), so while we
continue to move forward – it’ll be in some state of limbo (which is becoming
normal for us).
After brunch, we headed to Kensington
(downtown Calgary) see the Peace Bridge off Memorial Drive before walking over
to try an extravagant milk shake from Burger 320. We then went to see a movie
before heading home and spending the rest of the afternoon + evening with
Evanna. Overall, it was a nice little moment to enjoy some quality time between
all the hustle and bustle of life.
[TOMORROW]
Granting a PICU bed remains available
(as it’s generally the main reason our surgeries and procedures get bumped),
Evanna’s bronchoscopy will take place on tomorrow morning. At the moment we’ve
made the decision that I will still go to work that day (this shift was
scheduled weeks prior to getting the procedure date), and Nick will take Evanna
to the hospital that morning for the routine procedure (because they have to be
at the hospital extremely early, I will help Nick get Evanna admitted and then head
off to work). I’ve made Nick promise to call me the moment he finishes speaking
to the Respirologist and share the results with me (so all the details will be
fresh), and will then join him back at the hospital the moment I get off work.
I’m super nervous for what they will find and just *crossing my fingers* that
Evanna’s trachea will show that it’s finally starting to strengthen, and we can
lower some of her vent settings and work towards sprinting off the vent.
We went into last year’s bronchoscopy
with very high hopes, and were discharged a few days later completely
devastated that not a single change was made to her very high ventilator
settings. Despite improvements in certain areas of Evanna’s health -- we’ve
been at this plateau for what I consider the “big stuff” for quite some time
(I’m taking years here…), and would honestly like to see some momentum happen.
I just wanna see the light (even if it’s small) at the end of this tunnel in
regards to our trach/vent journey and know we’re headed in the right direction.
We’ve seen the power of prayer work in the past, so if you can, keep
Evanna in your thoughts and prayers tomorrow morning that the bronchoscopy will
go well and that we’ll receive some positive results.
[CARDIOLOGY
UPDATE]
Last Thursday I called our Cardiology
clinic to see if they could inquire to our Cath date, as we STILL hadn’t heard
from the Stollery about a timeline for this procedure. One of the cardiac
nurses retuned my call and stated that she called Edmonton and at the moment
we’re currently slated for June date (….. and yes, by jaw hit the floor when
she said that). The nurse stated that it was obvious that I wasn’t happy about
this timeline and completely understands that while Nick and I are reasonable
people (we’re not newbies to our healthcare system, so we know how to “wait our
turn”), but there is a lot riding on this procedure and we’ve been waiting long
enough. The nurse said at the moment, there was nothing she could do, but would
email our primary cardiac nurse and cardiologist, as our cardiologist is the
only one who can advocate for quicker date. Unfortunately our cardiologist is
away for another week, but thankfully this bronchoscopy is providing enough distraction
in the meantime. The referral paperwork that was submitted asked for the Cath
to be done “within the next 3 months”, and it should have gone in at the
beginning of February, but due to some communication limbo, it didn’t go in
until mid-March … so my hope is that our cardiologist can try and work some
magic and have it moved up to sometime between the end of April or beginning of
May.
Thanks again for your all your love, prayers and support,
xo The Irvine Family
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