Day 26

Cris and I has a conversation today about each of our boys.  How we love each of our sons for different reasons. And how what we love most about each child is also often the characteristics that drives us most nuts about them.  

Lately Shay has been driving me a bit insane. His tenacious, determined, and relentless attitude can be trying and tiring. He tests me, he tries my patience, he persists and persists until he is heard and he is acknowledged.  If orchestrated in the right manner, these are characteristics that will bring Shay much  success in this world, characteristics of a warrior, a fighter, a winner.  

My Granda Sneyd always used to tell my Dad to be careful when raising me.  He often reminded him of the fact that I needed a firm disciplinary approach, however, when doing so he needed to be cognizant to not break my spirit.  I now feel that I am being asked to walk this fine line with my own son.

Who knew that parenting could be so difficult, yet so rewarding!

I adore you Shay.  You motivate me, inspire me, and teach me the true meaning of courage on a daily basis! I wouldn't change a thing about you for the world.  God gave you exactly what you needed to be successful in this world!

January 25 - We got MAIL :)

The boys received mail today...  

They were anxious to rip open the envelopes and see what was inside….

They got busy right away reading the letters addressed individually to them…

Ohhhh…..someone is excited as he realized what the letter is all about….

Ciaran and Shay have been accepted into an overnight Easter Seals camp for one week this summer.  So, so, sooooo excited!!!!

January 24 - NO WORDS NECESSARY :)

January 23

Five and a half months and my little man is sitting independently….be gentle with me time…you are moving much too quickly!!!!

January 22

We got a package from Shay's runner Abby earlier in the week from the IRun4 group that we part of.  Her goal is to run 200 miles in the next few months, so she sent Shay a paper chain representing her 200 mile journey.  Now every time that Abby runs, she will let Shay know so that he can take some loops out of his chain.  It is such an amazing visual for him and is such an interactive way to get Shay involved in the journey.  

Ciaran's buddy Alison has also created an extremely cool way to keep him involved in her journey….her approach too is so interactive and visual for him.  Will share in a post to come :)

January 21

My life has just gotten one heck of a lot easier!!  Getting good haircuts for the boys has always been a struggle.  Every time I try someone local, I am just not happy with the cut.  So, for the last three years, I have been trekking the boys down to Streetsville to get their haircut from a former students Mom who we were always guaranteed to walk away happy.  Despite good haircuts, I must admit that the trek was difficult, as it was a LONG way to go just for a haircut and the salon was not completely accessible.  Also, we were never guaranteed a good parking spot since the salon was on Main Street - which would put a whole other wrench into our plans.

Well - my old hairdresser just recently moved back to Ontario after a few years out west and he is making house calls.  So, he will come to our home and cut all of our hair for a very reasonable price right in the comforts of our own home.  And the best thing about it…is that I am really happy with the final outcomes.  

Now I will have NO excuse for my kids hair to be as LONG as it was in their before pics - especially Rowans!

January 20

Rowan is an independent soul.  I truly believe that he thinks he is 6 1/2 just like his big brothers, Ciaran and Shay.  Lately, he has been trying to get dressed for outside on his own by doing the "jacket flip".  He definitely has the independence thing down - now he just needs to figure out how to lay jacket out in front of him to ensure that he gets the jacket on the right way :)

January 19

Declan is starting to really figure out the whole Jolly Jumper thing.  He LOVES it and is more than happy to spend lots of time in it while he happily watches his brothers play in the playroom.  Take a peek

Thought the video was cute.  Apologies for the background noise - just riding out another tantrum as we continue to move through the terrible twos with Rowan :)

January 18

Sitting crosslegged does not require a second thought for most if us.  For Shay, because of his tightness and tone, it is extremely difficult....on some days, it is near impossible.

We are four months post-Botox at the moment and Shay's tone and tightness is starting to rear it's ugly head.  We are working hard on a stretching regimen to maintain muscle length and maintain function.  After a really good stretch today, Shay was able to sit cross-legged independently.

Puts things in perspective sometimes, how much we take movement and mobility for granted.  Thanks for the reminder Shay!

January 17

One of my New Year's resolutions is to get moving and get healthy in 2014. I'm finally learning that I need to put myself on my to-do-list.  It is clear that when I exercise and am eating healthier, I have  so much more energy for my boys.

So...lately I have been taking the kids down to the basement during the day and taking a 1/2 hour to get a run in.  The boys love playing in the basement and by going in the afternoon I make sure that the run actually happens.  If I leave it until Cris gets home from work and after we eat dinner - I find I'm too tired, and my good intentions almost always go out the window.

I decided that I would register for the Younge Street 10k on April 13th. Hopefully it will serve as motivation for me to keep at it.  Time will tell :)

January 16

Today was a monumental day! Ciaran and I went to Sick Kids to see his Neurosurgeon, Dr. Kulkarni.  He was happy to report that Ciaran's Hydrocepheles is considered stable now.  Head growth has stabilized, MRI images showed no changes!  This means that we now need to see Dr. Kulkarni on a yearly basis. Phew...a step in the right direction!

Ciaran's eye is SLoWLY recovering - still very swollen and misaligned.  Should take a week for swelling to go down.  Despite looking awful, he has actually been very "on" the last few days - he's had a break from school and he is well rested - a recipe for success :)

Day 15 - A package from Abby

Shay was thrilled tonight to open a package from Indiana from his running buddy Abby.  In it there was a IRun4 medal.  As you can see from the pics, Shay was SO proud of his new piece of hardware!  

He also received 150 strips of miles.  This weekend we are going to make a mile chain.  Then when Abby runs - she will let us know and we will take those miles off the chain.  Will be a great visual for all of us :). Thanks Abby and Alison / for making a difference in the lives of our boys!

Day 14 - Strabismus Surgery

Ciaran was definitely a trooper today.  Today he had strabismus repair in his right eye with Dr. Budning.  Surgery went well despite being very, very painful for Ciaran.  He  woke up out of surgery screaming his head off - this proceeded for 15+ minutes.  Cris seemed to think that the morphine had not kicked in right away - as after 15 minutes he was beyond subdued.  Poor little guy - sometimes I think that it is so unfair what Ciaran and Shay have to endure...and they never, ever complain.  A lesson for all of us!  Yesterday he made a point to go and tell the nurse working that was in the post-op room that she "really, really hurt him" - it's nice that he is starting to better articulate how he is feeling/perceiving the world.
He also told Cris tonight that he "was seeing two daddys" which means that  bothof his  eyes are working.  Now the next step is for his brain to figure out how to get the two eyes to start working together. 

Day 13 - January 13

We are trying to get healthier in the Parreira/Sneyd household.  The one thing that we really need to work on is bringing more fiber into our diet especially for Ciaran as when he gets constipated - it effects his whole being.  Ciaran doesn't do well with Breakfast time - he tends to gag alot and is not interested in eating (which is uncommon for him as he LOVES to eat)

The last few days I have been giving Ciaran a Morning Glory shake.  He loves the taste, loves that he is being treated like a big boy, and loves that he is different that everyone else.  I'm loving it because I am able to add 1TBSP of flaxseed every morning which should help him with his regularity - here's hoping!!!

Day 12 - January 12

Rowan LOVES to help his Dad and Granda around the house.  Today he was so proud to help Cris shovel the driveway.  When I asked Rowan to look up to take a picture, he was quick to tell me that he was too busy! 

I think Rowan is going to be a "fixer" - very much like his Granda whom he looks an awful lot alike.  Thinking about it, Rowan in so many ways, came into this world as a fixer….hmmmm….

Day 11 - January 11

These pics just make me smile.  Declan is becoming "one of the boys".  He demands to be near his brothers all of the time.  Declan is such a beautiful addition to the family.  I can't wait to see exactly what he brings to the family dynamics in the next year or so.

January 10

So we have joined a new FB group called "I Run For".  It is such an inspirational and motivating site. Basically volunteer runners are paired with kids/adults who can't run themselves for whatever reason (mobility needs, cancer, developmental disabilities, etc.) and the runners dedicate their runs to their buddies each week.

A few times a week, the buddies will post pics from their run for Ciaran and Shay.  It is so cool and the boys are so into it!!!

Ciaran has been paired with Alison.  She is from Santa Rose Beach, Florida.  She is currently training for a marathon on February 2.  Yesterday she ran 18 miles along the beach.  She sent a picture of two dolphins swimming in the ocean that she saw at the end of her run.  How cool!!!

Shay has been paired with Abby.  She is from Seymour, Indiana.  Abby too is very active and seems to workout every day!  She has two children and a dog named Tesla which has been a cool connecting piece for Shay since he loves dogs so much.

Both women are inspiring.   We are so proud to have such positive, strong, committed and powerful role models in the boys lives.   We are continually blessed by the amazing people we meet on this journey!

The two of them along with the thousands of other I Run 4 runners have inspired me to get my butt in gear and get running again.  I am currently 1396 on the wait list to be matched with a buddy.  I am already running - last week I ran a total of 11 miles - this week, my goal is 13 miles.

January 9

Rowan seriously makes me laugh out loud on a daily basis.  He has so many idiosyncrasies that I just adore.  Today I came into Ciaran and Shay's room to find that Rowan had stuffed himself and Shay's new Furby into the laundry hamper…what he was doing, I do not know :)

Here at nap time, you see another interesting side to Ro Ro.  He always lines his cars up by his head before he falls asleep.

Rowan is a lot of work - he is non-stop - all day, everyday - but I wouldn't change a thing about him...…I just adore him!

January 8 - Ciaran's Date

Tonight Ciaran and I went out for dinner with his Nana and Granda for his special date night.  Unfortunately, he was a little under the weather (we are all fighting colds/flu) and was quite off for the majority of the meal.  He spent most of his time playing on the iPad - he needed this outlet to become comfortable/accustomed to the environment.  A good reminder for me - sometimes I need to be patient and not push situations that Ciaran is not ready for.  He is such an enigma to me sometimes - so unpredictable - so spot-on some days and so off on others.

Whatever the case, he enjoyed the 1:1 time…I look forward to many more dates this year with my sons.

january 7 - Day 7

My little man is eating solids!!!

And as you can see, feeding him is truly a team effort :)

January 6 - Day 6

Ciaran's smile is probably one of my most favourite things in this world.  His genuine and warm smile warms my heart every single time….always said there was something magical about my Ciaran…I still believe it!

Day 5 - Shay's Date

Shay had a very special date with his Dad and his friend Elizabeth.  They went to Toronto to watch the Womens World Junior Hockey Championship.  We were given the tickets from an incredible group (PAL) that we are part of for parents of children with special needs.  They got to sit in a box and Shay LOVED his endless supply of popcorn and pop - I think that might have been the highlight of the night for him :)

I wish I could of bottled up his smile that he shared when got home and told me all about his special time with his Dad.  My little man is really growing up - not sure how I feel about it :S

Day 4 - Rowan's Date

 It was SOOO nice to go out with Rowan and his friends to see a Sesame Street Show.  I think it is possible that I enjoyed it as much as he did.  We took the GO train to Toronto, went out for a milkshake and french fries and then went to see the show.  He went with his two good friends Jeremy and Lok - a good time was had by all!

The date really reinforced for me how important this 1:1 time with be for all the boys.  I look forward to   our dates to come :)