PFCC Award

Tonight I chaired a meeting of a committee to select the recipient of the third annual Award of Excellence for Patient and Family Centred Care at the hospital where Malcolm was born and receives all of his care, the IWK.  Winner(s) will be announced at the IWK AGM on October 24.  I helped start this award on my first year on the then-new IWK Family Leadership Council as a way to recognize and promote family-centred care. 

A lot of people questions what this means and assume that great hospitals like the IWK are already doing this...which they are, to a certain extent. 

What we're trying to promote is involving patients and families in making decisions about their care - collaborating with them rather than sharing recommendations and decisions after all the discussion has taken place.  This includes things like communicating information to patients or families in a way that is easily understood, including patient and families in making key decisions regarding care, ensuring families are included in multi-professional rounds and supporting them in participating in those rounds, and understanding the needs of patients and their families.

This will likely be my last year of involvement with this award.  Malcolm's health issues have subsided so I will likely focus my volunteer time on other activities once he's in the school system.  It's been a great feeling to help establish the award and influence who receives it.  It has been especially great to read all of the nominations that come in and learn about so many dedicated caregivers who are really doing their best to support patients and families.

Mary Ellen

Speech update

I have not given a speech update on Malcolm in quite a while.  Last spring, he started to try to say more words - a real breakthrough.  Unfortunately, it is almost impossible to understand what he is saying.  We can usually figure it out given the context but people who don't know him most likely would not even realize he wasn't just babbling.

We decided to ramp up the speech therapy.  He was only being seen once a month through the public system so we found a private therapist.  Her office is located close to our house, which is convenient.  The activities she does with Malcolm are similar to those of his regular therapist.  Malcolm seems to respond well to both and I think that it's beneficial to have the weekly sessions with a trained professional rather than just Jan and I struggling through a whole month...

This fall, he is being seen twice a month through the public system.  This is fantastic as we love his regular speech therapist.  We continue to see his private therapist on the alternate weeks for a slightly longer session than in the spring so it is a win for everyone I think.

But have the extra visits resulted in improvement?  This is very difficult to say.  Some days he tries to say words on his own and some days he does not.  He usually will try to say words if prompted by an adult (or sometimes his brother!).  He generally likes to do the word games that are suggested by his therapists to help with his pronunciation.  So we'll continue on as we are and really try to promote more speech development.

In the meantime, he continues to communicate quite well through signs, sounds, pointing, etc - let's just say he doesn't usually have trouble getting his point across!

Mary Ellen

31 for 21 (x3)

This is my third year taking on the 31 for 21 challenge.  I will try to add the "button" tomorrow but I do encourage you to follow this link and check out some of the many blogs of parents with Ds, or in a few cases, individuals with Ds, maintain.  The goal of 31 for 21 is to raise awareness about Ds.  The challenge is to post a new blog entry every day for the month of October.

Wish me luck!
Mary Ellen

Thank you

Today Team Malcolm ran in the Terry Fox Run.  Friends Jen and Lauryn joined us and Grama and Grampa Rainey were there to cheer us on.  Donovan and I ran one loop (3.3 km) with Lauryn, Jen ran two loops and Jan and Malcolm walked a couple of kilometers.  Donovan ran almost the whole loop - what energy!  Lauryn and I were almost outdone by a six year old.  It is a fun event with fresh waffles and other goodies to eat after - what a welcome treat.

We raised over $1,400!  Many thanks to those who donated online, by cheque or cash.  We were very pleased that so many of our family and friends decided to give a little extra to cancer research this year.  We hope to keep doing the event and to raise at least $1,000 each year for ten years - so that we can help contribute at least $10,000 to the cause.  Thank you all for being a part of that and stay tuned for next year!

Mary Ellen

Terry Fox Run 2012

On September 16, Team Malcolm is again participating in the Halifax Terry Fox Run.  After our success last year, we have decided to make it an annual event.  That smiling face you see above has benefited from cancer research and we want others to benefit the same way.  As recently as the 1990s, more kids were being killed than cured from the treatment they received for Malcolm's specific type of cancer.  Research revealed that kids with Down syndrome have a particular sensitivity to the chemo drugs used to kill the disease.  By drastically reducing the doses these kids receive, the survival rate has now increased to upwards of 90% - greater than for any other type of childhood leukemia.  Researchers are now studying the unique characteristics of kids with Ds to try to replicate the same result in all kids.  Research does make a difference.

We support the Terry Fox Foundation as it is a volunteer driven organization that supports research into a broad range of cancers.  This year as we run in honour of Malcolm, we also carry in our hearts family friend Darren and our Uncle Brent, and their families, as they have been journeying through their own experiences with cancer this year.  In addition, we never forget the faces of the other kids who shared Malcolm's journey at the IWK.

We welcome small donations, large donations and expressions of support.  Terry Fox is about hope.  Together we can make a difference.

Mary Ellen

We're Back

Rocket Man

This is a rather late Father's Day post.  Donovan heard about bottle rockets at school and he asked his dad if they could make one.  Jan obliged - he looked up directions on the Internet and then he and Donovan took a field trip that included stops at his lab (for a rubber stopper) and Canadian Tire (for a manual pump).  They built the base and the rocket at home and then took it for a test run.  The bottle is filled partway with water and then air is pumped in until the pressure makes it launch into the air!  Very exciting.  Donovan and Daddy took Malcolm and Mommy out to see it.  Malcolm sat on my lap while the rocket launched and then it was his job to go retrieve the empty bottle, which he did very nicely and then settled in my lap to wait for the next episode.  Too fun!

The last photo shows Malcolm at the playground last weekend with his little basketball - he is getting to be a big boy!

Today was a very damp, cold day but we weathered through family fun day for Malcolm's daycare at a local park for two hours.  Tomorrow it is pirate day down at the waterfront and I am seriously considering breaking our winter coats out of storage...

Mary Ellen