Botox Follow up appointment

Hi all,

Yesterday we had a follow-up appointment with Dr. Kim, Shay's botox doctor.  This was the first time that we had seen her since Shay had the Botox administered on Jan 25th, 2010.  Dr. Kim was interested in whether Shay had any ill effects from the injections - which Shay didn't.  We also discussed how things were going and what we were noticing.  There is one thing for sure.  Shay is definitely standing up straighter, walking more and for longer periods and he is more functional.  There is still a lot of work to do with strengthening of Shay's legs, particularly the quad muscles but she was very happy so far.

The next step was to do some measurements on Shay's legs, how quickly the leg would 'catch' when stretched and how much range of motion Shay has.  Her comment was that Shay has seen a tremendous improvement in all respects.  YEAH!

One thing we know for sure is that the Botox will wear off and we are already seeing some of the tightness return :( but it would seem that Shay is doing well enough at this time that Dr. Kim only wants to see us back in August!  I have to say that I was surprised and I hope this means that we are doing a bit better than expected. 

So onward we go and we continue to be hopeful that we can continue to stretch and strengthen Shay's legs on the road to walking!

You call this THERAPY???

Ciaran and Shay clearly thought that they pulled the wool over our eyes when we brought them downstairs on Saturday to do some therapy - and were pleasantly surprised to see a new climber.  We have been meaning to get a climber for a long time - and so glad that we finally did.  They absolutely love it and don't even realize that they are in fact working really hard while they are playing.   Here are a few pics of them exploring their new 'quarters'

Ciaran and Shay: Described!

Hi all,

Last week we got together with all of the people involved in Ciaran and Shay's care. This group included all areas where Ciaran and Shay receive services + the staff of the daycare that Ciaran and Shay go to three days a week. Today's post is not about that meeting specifically as that will be a future post but I did want to publish how Janet and Natalee described Ciaran and Shay during the meeting. They provided a handout for everyone and the review of the list brought laughter and lots of nodding in agreement....Anyway, without further delay - Ciaran and Shay: Described!


  • Happy

  • Funny

  • Determined

  • Smart

  • Loves to smile and laugh

  • Very Social - he knows all his friends names

  • Will play with PLAY DOUGH for hours

  • Enjoys sensory play

  • Enjoys dramatic play (especially taking care of the babies)

  • Ciaran is walking around the classroom on his own and will hold onto the furniture for support

  • Ciaran loves playing in the Sandbox - he enjoys scooping and pouring

  • Ciaran has fun riding the bike, jumping on the trampoline and playing on the climber and slide while outside

  • Ciaran likes to sit with his friends and do puzzles and other fun fine motor activities

  • Ciaran loves to sing J

  • Ciaran is able to pull himself to stand on his own if there is something for him to hold on to


    • Happy

    • Gentle

    • Charming

    • Smart

    • Always laughing and smiling

    • Loves to play with trains, cars and other forms of transportation

    • Enjoys puzzles and table toys like beading

    • Spends a lot of time at creative activities

    • Likes to stack blocks

    • Loves singing and using musical instruments

    • Knows his colours really well

    • Very social – he knows all his friends names

    • Enjoys being outside. He likes to ride the big car, go up and down the slide and play inside the playhouse where he will open and shut the windows

    • Uses a lot of spontaneous language

    • Enjoys sensory activities and playing in the sandbox

"His eyes look perfect"

We went to see Dr. Budning (Ciaran's eye surgeon) on Thursday morning and he thought Ciaran's eyes "looked perfect"! I couldn't believe he actually said this out loud as he is usually a man of very few words.

Ciaran's surgery last March was a sure hit - his eyes continue to be more alligned and moving so nicely together. He also shared that Ciaran is even less near sighted than he was only three months ago...way to go Ciaran!

It is crazy to think how different things were a year ago this time - since Ciaran had his strabismus surgery and we figured out that he was having seizures in October and since has been medicated - he is a completely different boy. It is hard to describe what exactly has changed - he is just so much more alert these days - so much more clear -I believe his world looks completely different now through his eyes - and he is loving it :)

Despite the tremendous improvements, we still see our vision consultant Michelle twice a month from the Blind Low Vision Program. Even though Ciaran can see significantly more than he could when she first got involved when he was less than six months old - he is still considered visually impaired as the vision loss that he does have as a result of his hypoplasia cannot be corrected. That being said, I really question how much his vision is affected as functionally he is doing sooo well. I never thought he would be where he is today with his vision - we have so much to be thankful for!

Wise Words from a Wise Man - Roger Ebert

Appearing on The Oprah Winfrey Show today, film critic Roger Ebert gave his Oscar predictions, said he felt “terrific,” and would have “no more surgery”: “I’m not going to talk or eat or drink again, so the surgery would be to patch my face back together… Nobody looks perfect. We have to find peace with the way we look and get on with life.” Ebert has lost his voice from thyroid cancer. He communicates through sign language and computer software that acts as his voice. He types out words and a computerized voice conveys them aloud.

This was an moving entry from his journal that his wife shared. A lesson for all of us!

“I believe that if at the end of it all - according to our abilities, we have done something to make others a little happier and something to make ourselves a little happier – that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world – that is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this but I am happy that I have lived long enough to find it out”
- Roger Ebert

Signs of Success - Therapeutic Horseback Riding

Tonight we finished our second round of therapeutic horseback riding at TEAD's in Hamilton. The experience has been such a positive one for Ciaran and Shay in so many ways.

Shay and Galway

First off, we have seen an incredible difference in Ciaran and Shay's core strength since starting horseback riding back in September. We have also seen significant reductions in the tone in Shay's legs the days following a riding session. This was my original intention in accessing this form of 'therapy' for Ciaran and Shay - little did I know at that point in time - how much more this opportunity would be for them.

Ciaran and Shay have developed an unbelievable relationship with 'their' beloved horses Ebony and Galway. They absolutely adore them. Every day I pick them up from daycare, the first thing that Shay asks for is Galway. When we pull into the parking lot every Monday - both boys get so excited. My friend Marie put it so perfectly one night in a conversation when she said 'the one thing you can not ever deny is the true connection between an animal and a child'. I am so thankful for the relationship that Ciaran and Shay have established with these two beautiful and gentle animals.

Beautiful and Gentle Galway

Another huge bonus to the therapeutic horseback riding is the confidence that Ciaran and Shay have gained through this experience. The first couple of weeks were a struggle especially for Shay as he sometimes fears the unknown - after sweating it out for three weeks - Shay put his fear behind him and embraced the moment. Both boys sit up on their horses now so straight and strong - they are so natural riding them now - I am so proud of them!

Shay and Galway playing ball

I am so thankful that I was introduced to TEAD's and that Ciaran and Shay have had the opportunity to ride there - every week I walk away with a warm and full heart as I witness the beauty of Ciaran and Shay's relationship with Ebony and Galway, and the kindness, dedication and sincerity of each and every one of the volunteers who give of their time and energy so freely to ensure Ciaran and Shay have such an opportunity. The world is good :)