Day 90 - Saying Goodbye

A week ago today, we had to say goodbye to Cris' dad and the boys' beloved Ovo at his funeral mass.  Ovo was a gentle man whom his grandchildren adored.  He will be greatly missed.

Joaquim Parreira
March 11, 1943 - March 19, 2012
God saw you getting tired
When a cure was not to be.
So he closed his arms around you
And whispered, "Come to me"

You didn't deserve
What you went through
So he gave you eternal rest,
God's garden must be beautiful
He only takes the best.

And when we saw you sleeping,
So peaceful and free from pain,
We could not wish you back
To suffer that again.

Day 89 - Nada Chair

Usually after a round of Botox, Shay's legs are really loose.  Unfortuantely, Shay has been a bit under the weather for the last two weeks with a bad inner ear infection.  When he is sick, Shay's tone and tightness tends to creep up on him which is so frustrating for all of us.  The goal following Botox injections is to build Shay's muscle and strength in Physiotherapy sessions and stretch the muscles as much as we can daily to try to maintain his muscle length.  The Nada chair is one of the best and easiest ways to get a good stretch of Shay's hamstrings and adductor muscles - and as you can see in the picture above, he is tolerating it nicely.  Another good way to stretch his his legs is after a nice hot bath as the muscles are much more relaxed.  A bonus that came with our new house is a hot tub - we are hoping to have it cleaned out by the end of Easter weekend so that we can add the hot tub to Shay's stretching regime.  He is very to go swimming in his hot tub.

Day 88 - Wednesday

I was so sure that Rowan would be walking before his first birthday.  He has been creeping along the furniture confidently since he was ten months old.  Well he is getting close to thirteen months and he is still not walking independently.  Instead, he is literally running through my house with his very own walker.  He is a madman in his walker - running forward, backwards, navigating around corners, through halls....his walker is his tried and true right hand man - he brings it everywhere with him!

Day 86 - Mission Impossible?

18 is my favourite number - it is now and it always has been.  18 is my soccer number.  Sadly, 18 is the number of days I am behind in Mission 365.  The past month has been overwhelming on so many levels.  I am back to work and we have had so many things to work through with our boys, ourselves, our family. I have pictures to account for the last 18 days and I am going to work backwards to fill in the gaps.  That being said, I have decided that I too must move forward with my posts and fill in the gaps as time permits...or the task will become will my mission.

Day 71 - Happy Birthday Ovo!

On Sunday March 11, 2012,  we gathered with all of Cris' family to celebrate Ovo's 69th birthday.  I am so thankful that we all had the opportunity to be with our Ovo to celebrate such an important day with him.  Despite being gravely ill, Ovo enjoyed the couple of hours he had with his sons and his grandchildren whom he absolutely adores.  I've always been really touched by Cris' Dad's interest and love for our boys.  It makes me really sad to know that the boys will never really have the opportunity to truly get to know him.  Happy 69th Birthday Ovo - today, forever and always....

Day 68 - Happy Birthday Baby Boy!

Happy Birthday Rowan!!!  You have brought such an immense amount of love, joy, and laughter to our lives in the past year.  We are beyond thankful that you are part of our little family.  You amaze us daily.  We love you more that any of us could ever express. 

Day 66 - Cortical Visual Impairment

Okay - I am soooo far behind on Mission 365, yet determined to catch up.  I have downloaded all the pics for the first seven days I am behind on.  Last week was a huge week of appointments which comes with lots of things I want to share.  So much to share that I have not found the time to write many of the posts....I just have the pictures downloaded.  I've decided that I will post the pics with a sentence or two...and will catch up with my writing when time permits.  If I don't get back on this, I am afraid I will fail my mission the second time around. 

Tuesday was a day of  tremendous insight for Cris and I.  Maureen our PT from Sunnybrook arranged for Ciaran to have a functional vision assessment from Dr. Christine Roman a renound researcher and clinician in Cortical Visual Impairment....(more to come)

Day 65 - Botox

Today Shay received his 4th round of botox.  This time the lead up to the botox appointment was a bit emotional for Shay.  When I told him two weeks ago that the botox appointment was coming up, he got very upset and told me he didn't want to go as it hurt too much.  Of course, my heart just broke for him.  It was probably a good thing that things went down the way that they did as it helped Cris and I better prepare Shay for the appointment ahead.   We talked about the procedure and told him what an amazingly brave boy he is and just reinforced over and over again whatever he needed to hear.  It was a bit of a wake up call for me.  So much for a little four year old to take in - and as per always, he took it all in stride.  Oh how he continues to inspire me!

We changed the routine up a little bit this time around to try to help calm Shay's anxieties.  We had Shay pick a toy for being brave prior to the appointment so that he could bring it along the day of.  We thought this may keep his mind occupied and hence make him worry less.  He chose a big log truck and it seemed to have done the trick.  Shay was much more focused on getting his log truck then he was on the pain he would to endure to get it.  As you can see in the picture below, he was pretty chuffed with his new fleet :)

We did get some fantastic news today at Shay's appointment.  Dr. Kim did an ultrasound on Shay's legs to take a closer look at his muscles.  Usually at this age, the muscles start deteriorating because they are not being used - instead the tone is the stabilizer.  To Dr. Kim's surprise, Shay has big muscles in his legs - a huge reinforcement for us that all of the efforts and driving that goes into PT appointments are soooo worth it.  We were beyond thrilled to say the least!!! 

Day 64 - Back to Work March 5

March 5 marks my first day back to work.  I have very mixed feelings about returning to work part-time.  Of course, I would much prefer to be at home with my little baby boy.  He grew up way to quickly, it really hard to think that nearly a year has already passed since we welcomed Rowan into our family.  On the other hand, Rowan is going to a daycare with a lovely care provider and a lot of young kids that he will have fun playing with all day.  I think the interaction, more predictable schedule as he is not be running around with me to appointments will be really good for him. 

We have had an INSANE schedule the first week back to school (which is why I am one week behind on posts).  I will do my best to get caught up.  It is hard on the crazy weeks - because when we have big appointments - there is so much more to post and I want to take the time to do each appointment justice especially with such significant ones.  We definitely had some breakthrough appointments this week....stay the meantime, I will do my best to maintain some sense of balance in my life now that I am back to work...

Day 63

Today we worked on finishing the final touches on Rowan's room.  It has been a long time coming.  Here is the quote that we put on a decal for his room.  I love the quote and I think that it is the perfect choice for Rowan.

Day 62 - Reading before bedtime

Day 61 - DC Man

Our house is a proud supporter of DC shoes.  Ciaran and Shay's have been wearing them for years as they are one of the only shoes that fit over their AFO's that still have a little bit of the cool factor.  Today Rowan joined his brothers as a DC supporter and man did he ever look cute in them :)

Day 60 - Monkey See Monkey Do

Rowan follows Ciaran and Shay around the house like a little puppy.  He chases them, encourages them to chase him and just tries really hard to do whatever they are doing.  When they are in the mood, Ciaran and Shay love entertaining Rowan.  The giggles flow endlessly around here.  I am so glad they all have each other.

Day 59 - My new mantra

Day 58 - Independent Soul

Shay is one independent soul.  He demands that we give him the opportunity to do everything on his own. He does not want any help - he just needs time.  He is the keeper of the sunroom (known to them as the playroom).  When he decides that he is done playing at the end of the night, he closes shop.  He tells everyone to leave the room, turns out the light and closes the door all on his own.  No one can be in the playroom if he's not in there.