First Video of Shay walking with his walker

Hi folks,

Cris again...We have been video "taping" the boys for a while now and this is our first video post. About three weeks ago we got a "Kaye" walker for Shay. This walker is quite different than the one we have for Ciaran as it provides much less support than Ciaran's does. What we are sharing below is the three week progression of Shay using the walker in a four min video. The video is a compilation of six clips taken from the 20+ videos we have recorded since we started Shay on the path to walking.

We are so proud of him, his tremendous determination and desire. We will continue to share his progress (and Ciaran's too) as he continues to gain strength and control of his legs. There is a lot of hard work behind this video and we can only thank everyone who has supported us throughout this journey. We are soooo looking forward to the day that we can hopefully put the "Kaye" walker in the donation pile at Sunnybrook hospital - special delivery to ML - one of the main driving forces beind 'Operation - Shay walking by 2' :)


Update + Pics

Hi all,

Cris here in a rare post these days...Things have been going well lately - so far I'm tolerating the radiation therapy well and I'm looking forward to the end in a couple of weeks. It's been a long, long road...

Ciaran had his eye surgery last week Friday and in typical Ciaran style, he tolerated it very well and was back to his usual self by Saturday morning minus the odd grumpy moments :) His eyes are quite red at the moment - and will be for some time. However, they too are much straighter....we are looking forward to seeing some fast tracking in terms of development! Shay is still making strides in his walker and we are working hard with him to get him up and going... he has taken a few steps in it on his own but he still has a long way to go. We'll just keep working on it! We are also trying to get a video up of him walking and once we have that we will upload it for everyone.

Things are looking up! He are a few recent pics of the boys!

Shay loving his chocolate pudding!

Shay realizing he is wasting some of his delicious snack :)

Ciaran - not quite as messy as his brother


Shay sitting in his new AFO's - that sit takes a lot of work!!!

Can you say mischievious???

Shay's new favourite game ' 'Peek a Shay'


Sporting his new AFO's...

Goooooo Shay!!!!! (video to come :)

Not sooo innocent...



Look at Ciaran Stand!!! Go Ciaran!

Ciaran after his surgery (eye really red - but straighter)
Please ignore Christmas bib - we are soo not with the times these days :)


Brothers 2

March - Quick Update

Hi all:

There continues to be a lot going on in our world - many, many positives and so much to celebrate! Ciaran and Shay are doing unbelievable - they are continuing to surprise and inspire all of the therapists with their progress! Both boys are meeting milestones that they were never expected to meet. I believe there are so many benefits in being a baby - as "I can't do it" is not part of their world, hence, that negative force of not believing in one's abilities has zero influence - the power of believing - a lesson for all of us!

Today Allison our very first OT came to visit the boys for the first time in a year - she was flabbergasted and thrilled beyond belief. She left the house saying that 'the boys made her YEAR' - she was so impressed with how far both Ciaran and Shay had come. They continue to bring us so much joy and they remind on a daily basis how lucky we are to have such wonderful little men in our lives and how important it is to keep on trekking!

A quick update - despite all of their progress, Ciaran and Shay continue to struggle with mobility due to low muscle tone and tight muscles. Both boys have recently been diagnosed with Cerebral Palsy which was expected for awhile now. The diagnosis is JUST THAT a diagnosis. It is going to get Ciaran and Shay the services that they need to get stronger and stronger - and ultimately to get moving. From a motor perspective, both boys are doing things that we were told by the doctors would not likely be possible. Ciaran is commando crawling and rolling all over the place, both boys are standing with the support of tables or couches, and both boys will be walking in due time. A diagnosis at this point does not in any way mean that we (or anyone else for that matter) should expect anything less of them. Instead, we are reminded of how truly capable they are, how determined and how so unpredictable diagnoses can be (you will see as the update continues). I will be honest - I hesitated sharing their diagnosis on the blog - for the sole reason that I do not want anyone to expect less of them. They both have taught me personally a lesson about fighting, determination, resilience and delivering. My little men still have so much more to deliver - I believe this - I hope everyone else does too! Cris and I continue to have the same outlook - one filled with hope and determination. I know that we will raise two young men who believe in themselves completely, who will love themselves, and who will embrace the gifts God has given them - and God has given them so many gifts!

Last week we got AFO's for both boys. They go on Ciaran and Shay's feet and provides them with stability. The more stable they are on their feet - the easier it is to walk. Shay also got a walker (not like Ciaran's) that we are hoping will be a temporary solution to having him feel more confident in his legs. It is clear that we have quite a bit of work to do - but as you know he is a determined little one.

Ciaran has continued to make huge gains with his vision! It is unbelievable how much patching has done for him. He no longer qualifies for the Blind and Low Vision Program - gooooo Ciaran! Tomorrow, he is going in for day surgery to have his eyes aligned. This surgery will help him use his eyes together in unison which will ultimately improve his vision potential. At the moment, because of his crossed eyes - he is seeing two of everything. I am so not looking forward to tomorrow - but I know that this will only be another huge step in him continuing to surprise us with his developmental outcomes!

Shay too has made huge gains with his hearing. Last December, we were told that Shay had a severe hearing loss. Last week, Shay had a hearing test and we were told 'IF Shay has a hearing loss - it is mild'. Cris and I were over the moon. Again, goes to show you the power of hard work, faith and believing!

Cognitively, both boys are still doing amazing. We are so thrilled with their progress.

On a final note, Cris finished chemotherapy at the end of January. He started radiation treatment this past Monday - and will be receiving radiation daily for the next three and a half weeks. He is in and out of the hospital every day usually within a half hour. So far, so good. They tell you that towards the end of the treatment, you may have difficulties eating and will be very lethargic. One week in - he is feeling pretty good!

I will get some recent pics up in the next few days. Say a prayer for Ciaran - I am sure he will be a trooper as he always is!