Christmas Morning...

Christmas morning was very exciting for the boys.  They again reminded us that they don't need much to make them happy.  They were spoiled rotten by Santa, family and friends.  More pics to come of the rest of the day...










Merry Christmas


We have been incredibly busy the last two months settling in to our new home in Burlington. Unfortunately we did not get around to sending out the Christmas cards that we made this year with everything else that we have had on the go! We moved into a bungaloft at the end of October so that Ciaran and Shay could have a more accessible home. They have the master bedroom on the main floor - and they are loving their new found independence!!! They are on their feet day in and day out in their walkers - and their sense of pride that they exude when they walk around the house completely reinforces our decision to move on a daily basis! Ciaran walked from the family room to his bedroom the other day completely independently. Shay is 100% toilet trained - basically since the first day that we moved in. Pretty incredible really. Cris and I are really happy with our decision - we can't wait to see the boys here in the summer - it's going to be fantastic! We have been overwhelmingly busy the past three weeks with specialist appointments - we are so excited to have a break for a few weeks!!! Friday can't come soon enough!!!
Hoping all of you have an incredible Christmas season and we wish you the very best in the New Year!!! We hope that we can connect more with our family and friends this year now that this move is behind us.

Lots of love,

Cris, Liza, Ciaran, Shay and Rowan

Happy Birthday Orla Clare!

Orla turned 10 this past weekend.  I cannot believe that she is 10 already - I remember the day that she was born like it was just yesterday...Happy Birthday Orla - you are growing up to be one beautiful little girl! 

Oh my...how I can relate...

A friend posted this on Facebook - and the message really hit home.  Thought I would share. 

Dear Parents of Special-Needs Children I’ve Taught In the Past,


I need to make a big apology. You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.


I didn’t know. Not even a clue. I thought, mistakenly, that having two special-needs children in my family made me more sensitive to your needs as a parent. It didn’t. And I’m so sorry for operating under the assumption that it did. I’m not attempting verbal self-flagellation here. I meant well. I knew a lot about autism and some about other special-needs conditions. I did care about your child. And I did want to do right by him. But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class. I thought being extra nice and seating her at the front of the room was what you needed from me.


But you needed more. And I didn’t understand that. You needed communication. A lot of it. You needed me to understand your depth of worry. You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child. You needed me to understand that I was teaching your child, not an I.E.P. You needed to know, not assume, that I would go out on a limb to make sure your child’s needs were met all over the school and not just in my classroom. You needed to not worry that, when your back was turned, I was still doing everything that I promised as well as thinking of better ways to meet your child’s needs. You needed to talk about your child in meetings and not worry about the clock.

I know better now. In just a few months, I am going to be placing my special little boy into the hands of the public school system. Because he is non-verbal, I will have no way of literally knowing how his day went, if he is being treated well, and if those to whom I am entrusting his care really do care about him. This kind of fear is paralyzing. And more so because I know just how little training (read almost none) that most of the staff in a public school have in dealing with children like my son. They, too, will mean well. But they won’t know. They won’t get it. I now know why you carry The Binder of Epic Proportions to every meeting. Mine is getting bigger by the day.


I look back now at all of your children and wish that I had picked up the phone more, written quick notes home more often, challenged your child more often rather than less, and made you feel certain that someone else loved your baby in your absence. For that, I’m sorry. I promise to do better for those kids in the future. I promise to not assume anything about your child’s unique situation and needs. I won’t just react to bullying of your very different child. I will actively be on the lookout for it. I will remember your child and her possible confusion on activity bell schedule days. I will take more time each day to get to know her. I promise to do my best to push, cajole, educate, and even take to task my colleagues who don’t get it in the years to come. I pray that teacher training will improve in the future and that my son will reap the rewards of that. And I hope that I am just as patient, kind, and understanding with his teachers and schools as most of you were with us.

And those of you who weren’t? I get you too.

Sincerely,


Your Child’s Former Teacher

Constant Appointments...

We have been inendated with appointments the last few weeks.  We have had a "big" appointment or two nearly everyday for the past two weeks.  As a result, we are completely exhausted...all of us...and are so looking forward to a break over the Christmas holidays....

One of the appointments was to pick up Ciaran's new glasses that he chose himself.  He calls them his "Thomas" glasses because they are the same colour as Thomas the Train.  Yes - I know - they are bright and BLUE - but he loves them enough to keep them on - which is a big improvement...so we will honour Ciaran's individuality - and let him enjoy his Thomas glasses while he is young...and carefree - you've got to love him :)



Seriously - You are growing up way too fast!!!

I'm back!!!  I finally found my camera battery and I am getting back into the grove of things.  Have at least 30 posts that I want to write - I will get to them in due time....

Today Rowan turned nine months.  He is growing up way to quickly.  I love how Rowan has demanded a position in our family - he is nine months going on five.  Follows Ciaran and Shay everywhere and expects to belong - love his persistence.  Ciaran is in love with him - he is reaching a point where you can see his admiration and love for Rowan - in the past, it was clear he loved him but he always expressed his love by being pushy and aggressive (he does not know his strength)....

Rowan - we love you beyond words.  You amaze us daily and we are sooooo thankful you are in our life :)










Milestones in month eight:
- crawling on all fours
- six teeth within days of each other
- pulling to stand
- demanding to eat human food
- calls on his 'mamamamamamama
- adores his brothers
- is as happy as happy can be...

Life is good :)

So out of touch....

We have moved to our new home.  We are in love.  The boys are in love with their newfound freedom.  We are beyond thrilled.

Moving has been quite overwhelmimg.  New house needed a lot more TLC than we had initially thought.

We are getting there slowing but surely.

Our family and friends have been amazing.  You've all heard it before - we are blessed.

Have so many blogs to write.  However have had no time. little energy and have not found my camera battery yet.  I will get there.

In the meantime, enjoy the pics we had done in a mini session with Rebecca Lozer this weekend.  She is very talented.



First Day in JK

Ciaran and Shay are now officially JK!  It is a bittersweet feeling - they are soooo excited to be big boys - but we are sad to be leaving the Preschool Room - it is all good though - they are ready...and there is no turning back now...




How appropriate...


I know that I have shared our 'tradition' of getting the boys a Thomas train after a more intrusive doctor's appointment.  Today Shay had his third round of Botox.  The purpose of the Botox injections is to numb the nerve endings in Shay's hamstrings, adductors and now gastroics which will temporarily eliminate the tone in his legs.  Shay gets his injections every six months or so and the effects of the Botox so far has lasted around five months.  The effectiveness of Botox injections may lessen with time - although our hope is that it will continue to be as effective as it has been for a long time coming!!!

While the tone is gone, we work hard at stretching Shay daily to try to maintain his muscle length.  This is difficult when he is growing so quickly.  We too word hard at developing the weaker muscles that tend not to develop because of the annoying and interfering tone...

I personally struggle with the Botox appointments - I hate to see Shay in pain - and I hate needles - so thankfully Cris has agreed to take these appointments on.  Today I picked Shay up from school and drove him to ErinOak to meet his Dad.  He knew that he was going to see Dr. Kim to get needles in his legs to help make them feel better (the last seven weeks or so - Shay has woken up nearly every single night in pain because of leg cramps).  During the drive, Shay wore his brave face telling me that he was going to see Dr. Kim for his needles  When we pulled into ErinOak, he flashed me the biggest smile, said goodbye and walked confidently through this doors with his Dad in his walker.

It was not until Shay got called into the room with Dr. Kim that reality set in and Shay's brave face was overtaken by fear.  He began to cry knowing that he was about to endure a pain that he didn't wanted to endure - he was going to have 10 needles today injected directly into his muscles which hurt much more than a regular needle.

The tears quickly dried up after he had his 10 injections knowing that he could now leave with his Dad to get his newest freight train.  His choice today was Hiro - which I felt was so appropriate for Shay as he truly is my Hero.  There are many days that I wish I could be more driven, determined, and relentless like him.  He exemplifies the true meaning of the word fighter on a daily basis - he never complains, he tries and tries again, the word "I can't" is not part of his vocabulary, and he doesn't pity himself. 

Shay - thank you for being a fighter.  Thank you for being a determined little soul.  Thank you for being a competitive little thing.  Thank you for always looking forward and never looking back.  The first moment I met you - I reached into your incubator and you grabbed my finger with such might - it was at that very moment that I knew you were going to be a strong and feisty boy- and I knew that you would have the personality you needed to be successful in life.  You have shown me these incredible qualities on a daily basis since your first day of life - I am so very proud of you and I hope and pray that you will always embrace the amazingly strong spirit that you possess. 

I love you Shay Parreira - you are my hero :)

Learning Something New Every Day...

We left the boys downstairs for a few minutes unsupervised today while they were playing at their train table...

....boys being boys found a way to be mischievious....

....I was so not happy with what mischief they found...

....all those colourful little specks on the floor and mats are tiny plastic pellets from the boys' sensory table - thousands and thousands of them....

....lesson learnt!!!

LOVE

Ciaran and Shay are smitten...and we couldn't be happier!


Six Months Old

I can't believe that Rowan is already six months old and I am already half way done my maternity leave.  Rowan continues to grow in leaps and bounds!  At six months, he is sitting independently, creeping, babbling (can say mama, dada, baba), is eating cereal and is just being introduced to fruits and vegetables which he is loving!!

Take a look for yourself at how much he has grown...


Busy weekend...


We had a very busy weekend planned...however, mother nature had other plans :)  Ciaran caught a bad cold from Cris Friday - and was out of commission all day Saturday.  When it comes to Ciaran - we tend to be extra vigilant whenever he gets sick - as the idea of him having another seizure is so overwhelmingly scary!!  Because he was sick, Ciaran was not able to go to his friend's Paige's birthday party at the Play Gym - Shay secretly went with Dad - while Ciaran stayed home and attempted to nap with me and Rowan.  We also had to cancel dinner plans with Geraldine and her family on Saturday which we were disappointed about but knew it was best considering Ciaran's situation.

Today Ciaran was feeling a bit better so we decided to go to Ella's 1st birthday party for a few hours.  It was a beautiful day spent with great friends.  Above is a pic of Rowan taking in the day.  More pics to come...

Motivation = Thomas PJs

Hi,

What motivates you to do something?  Its an interesting question and one that we are always trying to understand as it relates to Ciaran and his walking.  We feel he has many of the pieces required to walk and while we don't think he lacks the motivation to walk, we know that he will likely walk if he is motivated correctly.  So the other night while doing some practice walking I think we found the right motivation........Thomas PJs!  Yes, Ciaran is obsessed about Thomas and in particular his Thomas PJs.  So much so that he often asks to go to bed in the middle of the day so he can put them on.  The following is a video of Ciaran walking with the carrot that if he walks to me he can get his Thomas PJ bottoms :)  Lets just say that Ciaran has never walked so far, ever.  Enjoy!

video

In case you are wondering.... Ciaran took 19 steps and walked approx 17 feet all by himself.  Truly awesome!

Cris






A picture says a thousand words...

Last weekend, Nicole a good friend of mine gave us a motorized 4x4 for the boys to enjoy as her son Eric had outgrown it and he had decided that he wanted Ciaran and Shay to have it.  The boys were smitten the moment that they laid eyes on their newest form of transportation.  Shay was absolutely beaming all morning on it.  It was so cute when I walked around the block with him - everytime, we saw a male outside - Shay would stop quad - basically pose - and encourage who ever was outside to take a look at his new ride.  Man - boys can be funny!!!  Take a look at the joy....
Shay's first glimpse of his surprise

Can you see the pride??

Taking Ciaran for a ride

Ciaran's turn...

Shay could have ridden all day!!
Thank you so much Eric for being so thoughtful and thinking of us!!!  As always, it was so kind and thoughtful of you.  The boys already have gotten so much joy out of their new toy.  The perfect thing about the 4x4 is that is allows Ciaran and Shay to play in a way that their mobility issues do not interfere with having plain old good fun - what a gift - thank you!!!

Seriously...like seriously???

My little man is growing up right before my eyes!!  Rowan is five and a half months now and is showing off new skills and milestones on a daily basis.  Currently, one of his favourite things is the IPad.  Believe it or not, he is able to manage some of the apps himself.  His current favourite is Sparkabilities for Babies.  He is a picture of him enjoying his "toy"

Words from the wise...

I was recently in Winners and came across this picture that I thought would be a perfect piece for the new house.  The message is a powerful reminder of words to live by.  I look forward to finding the perfect place for it in our new home...we get our new house October 14th - I am starting so get really excited!!!


5 months old

Rowan is five months old already and is growing and developing so quickly.  At five months, Rowan is rolling both ways, laughing, standing with support, creeping on the floor, trying to draw his knees up into a crawling position, is eating rice cereal, has found his voice and loves the sound of it and just adores being the center of attention.  He is such a source of joy in our lives!  Ciaran and Shay are loving Rowan more and more by the day.  Shay is very aware of Rowan's needs and is always trying to help him out when necessary....I so knew he would warm up!
Take One - Rolling Interfering with Picture Success :)

What a huge difference one month makes!!

Handsome little man :)

SOLD :)


It's official....we are moving to Burlington.  Today we officially sold our house - we are about to embark on an exciting new chapter of our lives...one that we feel will so benefit all of our sons...drove by the house with my mom today - felt a sense of peace - I know we made the right decision for our little family.

Inspired...

Riley sent me this collage last night that she created of pictures that she has of Ciaran and Shay over the years.  It was so cool to have such a selection of pictures within one picture.  I am sure you would all agree that Riley did an amazing job with this!!!

Well she also did a great job at inspiring to get back on track with taking pictures and hopefully blogging again.  It has been hard not having my camera readily accessible to me.  It also has been so hectic the last few weeks dealing with house stuff - that I have had no time to even get on the computer, let alone blog.

I am hopeful that the house chapter is behind us.  We have conditionally sold our house as of Friday night - thank goodness!!!  Just need an inspection and financing to go through this week and we are good to go.  This is a huge load off! 

I am going to start taking lots more pics again and I am going to start working on sorting through the thousands of pictures I have taken over the years for the gallery wall for our new house.  Riley's  collage reminded me of how many amazing pics we have of the boys.  The gallery wall is a daunting job but an exciting one - I have had the frames now for two years sitting up in the spare room closet.  What a perfect time to start this project - I can't wait to put our mark on our new home in Burlington :)


Owner of my Heart

This is a picture of Shay at Physiotherapy - despite how hard it is - he always has fun and is smiling!  Our world would be such a better place if we all followed by his  example and faced our adversities in such a positive manner - you inspire me Shay on a daily basis!


Birthday Masterpiece

Ciaran and Shay had their 4th birthday party at 4Cats Art Studio a couple of weeks ago.  The party was a huge success.  All of the kids had an amazing time.  Below is the masterpiece that Ciaran, Shay and all of their friends created at the paint splatter party.  I love it and can't wait to find the perfect place for it in our new home.

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!