2009 Sasha Bella Fun Day PICTURES

Photo: Bryan McBurney

Hello!

We want to thank the families who came out and donated for making the 2009 fun day such an amazing time! Families, performers and volunteers - you were all so wonderful!

We feel lucky that such generous and talented people helped SickKids and Bloorview Kids Rhab and celebrated Sasha on such a beautiful sunny Sunday. Many people told us they felt the love in the room.

Warmest regards and a big THANK YOU! Between web and on the day donations we together raised almost $20,000 for SickKids and Bloorview.
Pamela and Jonathan

p.s the 2009 event website is still open - NO percentage of a dollar donated to The Sasha Bella Fund goes to administrative overhead, it all goes to family centred and interprofessional projects.

Photo: Bryan McBurney

Dr. Jonathan Hellmann, Clinical Director of SickKids Neonatal Intensive Care Unit, talks about staff working with families in a new Family Centred Care Family Care Committee that The Sasha Bella Fund helped birth with other SickKids families. Photo: Bryan McBurney

Charlie and Little Fingers Music take their bat energy to the floor and get kids and parents alike on their feet and claws, clapping their clackers. Photo: Bryan McBurney


Photo: Bryan McBurney

Mia stares up at the performers. Photo: Bryan McBurney

Volunteer Jonathan Gould channels earlier clowning and juggles for son and dad. Photo: Bryan McBurney

The photographer's son. Photo: Bryan McBurney


Tom Davis and Rachel brought us delicious smoked brisket sandwiches, smoked ribs and all beef steamed hotdogs from The Stockyards. Photo: Bryan McBurney


Sasha loved her Raggedy Annes. Did you know? Raggedy's creator made her for his dying daughter and it was later taken up as a symbol of the anti-vaccination movement. (Sasha had all her vaccines regularly)Photo: Bryan McBurney


Photo: Bryan McBurney


Bloorview Kids Rehab therapeutic clowns Helen and Janet. Photo: Bryan McBurney



Golden voiced Deborah Maes brings folky kids songs to the families. Photo: Bryan McBurney
 

With the help of our McNulty neighbours, The Young Choung Taekwondo Academy demonstrates taekwondo in group and solo breaking of the boards. Photo: Bryan McBurney



Michaela breaks her board. Michaela knew Sasha and last year organized a lemonade and cookie stand at her home for The Sasha Bella Fund.
Photo: Bryan McBurney


Sho Mo + The Monkey Bunch gave us their super tight, high energy kids music as our fun day finale.
Photo: Bryan McBurney


Photo: Bryan McBurney

NICU parent - staff brainstorm

Fifteen SickKids NICU staff met with three parents to share ideas on family centred care. Two other parents who could not make the meeting participated via written submissions. The two hour scheduled exchange went to almost three and a half hours as we recognized communication that works and delved into specific and general challenges relating to space, continuity, developmental support, role clarity, helpful technology, scripted communications, a reengaged family advisory and more. Our next steps are to draw up a list of recommendations and together discuss how to best take this forward, considering the considerable prior work by an earlier NICU family advisory council. Participants at this NICU family centred care brainstorm were, going around the table: Dr Jonathan Hellmann (NICU Clinical Director), Judy Hawes (NICU Nurse), Jonathan Blumberg (parent, Sasha Bella Fund), Lisa Bonney-Leung (parent), Kim O'Leary (Child Life), Jennifer Butterly (Marnie's Lounge), Lori Ives-Bain (NICU Palliative Care), Chris Churchhill (NICU Operations Director), Melody Hicks (NICU Clinical Manager), Pam Hubley (Chief, Nursing), Janis Purdy (parent), Dianne Flacks (parent), Jonathan Purdy-Flacks (Janis and Diane's baby), Kim Dionne (NICU Nurse Practitioner), Sharyn Gibbons (NICU Nurse Practitioner), Chris Elliot (NICU Quality Leader), Suzanne Breton (Occupational Therapy), Laura DeOliveira (Social Work, NICU), Dianne (Social Work, NICU) Sandy Steinwender (Occupational Therapy). Frank Gavin (SickKids Family Advisory Committee) joined us for the introductions and offered to share resources on NICU family advisories but was unable to stay due to another presentation committment. Gord and Stacey Archer provided written submissions that were presented by Janis.

Reconnecting with SickKids NICU

Thanks to an NICU family request, the Fund has reconnected with SickKids NICU. Sasha went to NICU from Mount Sinai Hospital on the night she was born however we only spent a few days there as her cardiologist quickly established her issue and allowed us home (as we wanted) with a very blue baby saturating in the low and mid 60s.

After bumping into and meeting the family for the first time (Jonathan, Janis and Diane) in the hallways of SickKids after a CCCU education session on Monday, I called up Dr Jonathan Hellman, Clinical Director of SickKids NICU. The following afternoon he called me back and we had a much appreciated discussion about NICU plans. We ended with Dr Hellman sounding excited to engage us in a family-centred brainstorming session with his team and the fund and parents. NICU will get back to us on a time.

I had read the ambitious 2005 strategic directions sketching out a triple play evolution in NICU: a new individualized developmental program, equipment that would allow continuous monitoring over 24-48 hours rather than depending on snapshots and a rearchitecting of the NICU to allow night and day, private individual rooms for baby and mom, stimulation in the form of sound and color. They wish to bring on two new staff fulltime, to merge social science and neuro science.

This program of advanced individual development has not been fully embraced, he admits, and is partly based on work by maverick Heidi Als on infant brain development. It is hard to scan if development programs make a structural difference. So they are looking to confirm that such a program can produce the traditional measures of expanded neural cortex, parent satisfaction and involvement, breastfeeding and bonding.

Dr Hellman is an advocate for the nurture side of the nature-nurture equation. As he sees it, intuitively there is no question that a mother who spends more time with the baby and gets more info will be a fantastic mother. "Intuitively we know its better that the mom is with her child, feeding, rather than when we call the mother in three times a week with no breast milk."

"I am not a complete contrarian but I dont buy that genetics loads the gun and that is the end of the story. Genetics doesnt do the rest. You know what, we have learned, after much study, ok, so breast feeding is good!"

He noted 'Implementation Science' requires us to look carefully as to how data is constructed from what is implimented at bedside. One size doesnt fit all and we have to look closely at physical and cultural and financial contexts. He referred to something so easy to know it would be like his Bobba telling him: you know if people dislike something they will try and stop it. So its not just about science and new genetic breakthroughs but how changing practise makes its way to the bedside and is then measured.

He shared a wonderful program setup by Linda Lo Re called PJs for Preemies, small sets of fleecy pajamas for tiny preemie babies.

In preparing for our CCCU presentations I was talking to CCCU nurse educator Karen Dryden-Palmer and she made it all fit into place when she described NICU as "the birthplace of family-centred care".

We look forward to learning more.