Mission 365


The last two weeks have been HECTIC!!! That and the fact that I still do not have my camera back makes blogging these days very difficult!  Good news is that we have a conditional offer in on a bugaloft in Burlington - the not so exciting news is that we have been scrambling like mad in the past three days to get our own house ready to put on the market as we are on a very tight deadline!!! 

More details to follow :)

Day 98 - And then there was twelve...

Vivian Grace Sneyd was born on Friday July 15th.  That is 12 grandchildren for Nana and Granda!  Congrats Rory and Tasha - Vivian is absolutely gorgeous!!!

Day 97 -The Brain that Change Itself


We met with Ciaran's neurologist today.  All in all, we were very happy with the appointment.  Basically Ciaran's head growth has completely stabalized - it has only grown .5 cm in the past six months which is typical to a normal developing child.  Ciaran's EEG came back as mildly abnormal so he will continue to take his Trileptal to treat his absent seizures. The EEG indicated that Ciaran does have some eptileptic seizure activity, however, the EEG waves are intermittent which means that clinically Ciaran is not having 'clinical seizures'. He is likely having intermittent activity because there is an area of his brain that is still irritable. We don't need to chase after them because they only last milliseconds and ultimately they don't effect brain function.

As you all know, Ciaran's brain damage is in the right temporal and occipital lobe. This area of the brain tends to cause more staring like episodes rather than more typical shaking episodes. The three bigger seizures that Ciaran has had in the past year were a result of the onset of a sudden illness. Triggers of seizures like these are exhaustion, fever, or sudden onset of illness. It is good to know this as it forces us to be much more diligent with him regarding taking it easy.

The best news that we received last week is that Ciaran's brain is working much more effectively than it was working a year ago. His last EEG showed brain wave activity in sleeping state at 1-2 hz which is below normal. This time his brain wave activity in a sleeping state was between 3-4 hz which is normal. This is very exciting - as it tells us that Ciaran's brain is working much more efficiently now. This is demonstrated in so many ways - particular ones that we have witnessed being - his faster processing speed, better communication skills, and his ability to share his unique sense of humour with us. Clearly, all of the amazing intervention that he receives is working. Just goes to show you the plasticity of the human brain!!! It is one thing to witness the amazing changes we see in Ciaran - it is another to have data that supports these changes!!!

Anyhow, that is all that I have for you now. Hope you are all enjoying your summer!

Day 96

Ciaran and Shay had a visit today from one of their favourite people - Bev!  The boys adore Bev and have an amazing connection with her - she was their primary nurse in the NICU and is now a close family friend.  It is so cool to witness the connection that the boys have with Bev - you cannot deny their connection! 

Bev loves to spoil the boys with the best books.  Today she brought some amazing books for Ciaran and Shay's birthday.  Here is a picture of the boys enjoying storytime with her! 

Day 95


Shay got a real cool Lighning McQueen remote control car from his friend Hayden for his birthday.  As you can see from the picture, Cris loves Shay's new toy as much as Shay does.  Love capturing moments like this on film :)

Day 94 - The object of Rowan's affection...


...Sophie!!!  Rowan is teething and his favourite person/thing at the moment is Sophie.  He absolutely adores her :)

Day 93 - Birthday Party

Today we had Ciaran and Shay's Birthday Party.  We had all of their friends from their daycare join us for the party.  We ended up having a Splatter Paint Party at 4Cats - an art studio close to our house.  The party was a lot of fun and the kids really enjoyed it!  My favourite part was that Ciaran, Shay and their good friend Hayden could completely participate in the party - it was fully accessible and the boys were on the same level field as everyone else.  I highly recommend 4Cats if you are looking for a birthday venue - they are fantastic!!!  Here are a few pics from today...

Brynn and Ciara - sooo cute!!!
Warming Up

Best Friends...



Shay-man













Day 92 - 4 months and growing so quickly

Rowan is four months today.  I can not believe how big he is!  He is such a strong little boy!  At four months, he is holding his head up, sitting independently in his Bumbo. rolling from his tummy to his back, rolling 3/4 from his back to his tummy, smiling, laughing, and demanding to be everywhere his brothers are - I love his presence!!!  Zoe wanted to be in Rowan's 4 month picture - she LOVES Rowan!!!


Day 91 -

Zoe making the boys laugh...

Sharing...

We had a great day today.  I had a few of my closest friends over - Erin, Nikki, Kirsty and Lorraine with their kids.  The boys had an amazing day with their little friends.  Of course, I didn't get pictures of the beginning day when Erin, Jack and Ellie were here but attached are a couple of pictures from early evening.  I love my friends - I am so thankful for all of them. 

Day 90 - Zoo Bound



Went to the zoo today with Ciaran, Shay, Rowan, Zoe and Ella.  We had a wonderful day despite the extremely warm weather.  Some of the boys favourite exhibits were the fish, giraffe, polar bear, and chimpanzee.  Great day with great friends - thanks ladies!!

Day 89 - Miss Zoe has arrived :)

Miss Zoe - Ciaran and Shay's long awaited friend from England has finally arrived for a visit.  We have a fun filled week ahead planned for Zoe, Ciaran and Shay.  Zoe is my good friend Lorraine's daughter.  I worked with Lorraine for ten years out at Summit Camp in Honesdale, Pennslyvania.  All these years later, our friendship remains strong.  So thrilled that our children were able to meet and become friends on Zoe's first visit to Canada.

Today, Zoe' enjoyed lots of snuggles with Rowan and playing under the sprinkler with Ciaran and Shay.  Everyone had a blast!!!









Happy Birthday


Four years ago today, our lives were forever changed!  Happy Birthday to my two little miracles...my two heroes.  Thank you for teaching me about patience, overcoming adversity, hope, faith, and believing.  Everyday I thank God that he gave me the two of you for my sons - the two of you inspire me, motivate me, and push me to put my best foot forward on a daily basis.  You both have so much to offer this world - I hope that you will always recognize this and embrace it!!  I love you with all my heart!!!!

I also want to give a shout out to LeeAnn who shares a birthday with Ciaran and Shay.  Happy 30th birthday - hope your two boys spoil you rotten today :)
One of Ciaran, Shay and Rowan's favourite and most loyal fans is their Ovo.  Cris' father absolutely adores his grandchildren - and it is so clear in every single interaction that he has with them.  Any chance that he has, Ovo will sweep the boys away to another room and takes complete advantage of quality one on one time with his favourite little people. 

Unfortunately, Cris' dad is very sick at the moment - I hope all of you can keep him in your thoughts and prayers.



Day 84 - A Broken Eye and a Stick in his Finger :)



Thought I would share the beginning of the end of my camera....Shay's broken eye and his stick in his finger :)

Day 83 - Rolling, rolling, rolling...

video

Rowan is rolling and moving all over the place...gotta love a little bit of independence :)

Day 82


Rowan has found his toes and he absolutely loves playing with them.  I find that I am watching from the sidelines in awe as Rowan meets different physical milestones so effortlessly.  I realize because of my experiences with Ciaran and Shay what a gift movement is - one that so many of us take for granted as it comes so naturally to most of us.

Day 81


Ciara came over tonight with Nana to look after the boys while we ran out to an appointment.  Shay adores Ciara!  Today he was determined to be up on his feet - walking around the couch, standing at the table - very aware that Ciara was paying attention to him being such a big boy.  It is so sweet to witness such amazing cousinly connections.

Day 80 - House Hunting


The house hunt continues.  Our wishlist is changing daily as we become more and more aware of things we have to take into consideration for Ciaran and Shay.  My mom and I went to look at this house today - it was a beautiful house in a very peaceful neighbourhood....unfortunately, the front yard is huge and the backyard is not as big as we had hoped for and it has quite a slope to it - so...we march on.  Thank goodness, we have a lot of time as I do not think finding exactly what we are looking for is going to be an easy feat!!!

Day 79

Oh Nikon...how I miss you!  Got a call today to let me know that repairs for the body of the camera was $280.00.  I am still waiting for the quote for the lens of the camera which was what I originally thought was broken...still mad at myself for not zipping up the camera bag...oh well - I guess it could be worse couldn't it!!!