Happy Second Birthday Wyatt!!

April 27 is the second birthday of a very special little man named Wyatt. I first heard of Wyatt in November and I was very moved to actually meet him and his mom just a few weeks ago. Wyatt has spent the last 11 months in the Cardiac Critical Care Unit. He has spent all but one night of his brave life at Sickkids Hospital. His mom, Lisa Celsie, has been by his side throughout, loving him, helping care for him, working with staff and riding a rollercoaster of hope, incredible medical challenge and personal sacrifice. Aunt Laura Celsie and the family have held toy drives and a golf fundraiser and are now working with a director of CCCU on a new program that will help staff support long stay children in the CCCU. Today is a huge milestone for Wyatt and his aunt Laura will surprise him with a birthday cake of his favorite movie, Madagascar.

Laura Celsie describes Wyatt as "an amazingly strong and brave little boy who has a smile that would light up any room, and has taught us more about life, love and strength than anyone else I have ever met in my life... Now we are just enjoying life with him, and teaching him new things, and trying to get them home. He enjoys pudding, both eating it and painting with it, and loves cheesecake. He plays with a bedfull of balls, and just this week got to go outside for the first time in over a year,” says Celsie. He blows kisses. “These are really little things, but when you see what we’ve been through, they’re big things."

In February, Lisa was told there were no more medical options for Wyatt and so they are working with CCCU to bring Wyatt home. This week he has been fighting pneumonia and has been uncomfortable as he is weaned from IV to oral morphine. Bloorview has been working on a trolley for his ventilator, oxygen, feeding pump, suction machine and oximeter and now he can spend up to 9 hours on a trach mask with a flexible oxygen hookup.

The family has been busy getting his story out and raising awareness about congenital heart defects (CHDs). You can see Wyatt in Metro and on the front cover in Durham. Here is a link to his totsites journal. Wyatt's story has also been on TV: here is news about the toy drive (see at 8 min 45 seconds) and interviews with Laura and Dr Steven Schwartz, CCCU Head (see at 24 mins).

Wyatt's Warriors are in the full swing of preparations for the Golf Tournament to raise funds for a new training program in the CCCU and I have posted Laura's invitation as well below. This families journey deeply moves me. If you are a golfer, please consider joining them in June for a day on the links and hopefully some details of the CCCU program. The Sasha Bella Fund is very excited by this ICU initiative and grateful for the opportunity to tell you about Wyatt.

Happy second birthday Wyatt!

Wyatt's Warriors 2nd Annual Charity Golf Tournament!!!

(A letter from Laura Celsie of Wyatt's Warriors, a Sickkids family fund setup in honor of Wyatt to support the Cardiac Critical Care Unit)

Hello everyone!

We are now getting ready for our 2nd Annual Wyatt's Warriors charity Golf Tournament! The weather is (hopefully) warming up now, and spring is in the air, and it is time to polish your clubs and shine your shoes!

Come out and join us for a great day of fun, while supporting an amazing cause. Our little Wyatt continues to show us what an amazing little boy he is every single day, and we need to continue to show him and his friends our support. The money raised this time will be going to a new special long term project in the Cardiac Critical Care Unit that is focusing on the care of long term patients in the CCCU. Wyatt is an inspiration for this.

Please remember to spread the word. Anyone at all is welcome to come to the golf tournament, and the more the merrier. Let's fill the course this year! 4 people per team, but singles or doubles are also welcome, we can pair you up!

We need to spread awareness of Congenital Heart Defects. 1 in 70 Canadian newborns will be born with 1 of the 35 known types. CHD's are the #1 birth defect, and the #1 cause of death from a birth defect. CHD's kill more children every year than ALL childhood cancers combined. Only 1 in 800 babies are born with Down Syndrome, yet there is routine prenatal screening done for downs, and not for CHD's. We need to change this, and one day, with your continued support, we will.

Here is the info for the upcoming golf tournament!

Saturday June 6th, 2009
Newcastle Golf and Country Club
Shotgun start at 12:30pm

$130 per person includes golf, cart, and a delicious steak dinner (vegetarian options are available)
Non golfers $30 per person for dinner

Silent auction, raffles, door prizes and more! We are already accumulating some great prize and auction items, so come on out and have an awesome fun day for a great cause.

Contact me at wyatts-warriors@hotmail.co­m or at 289 404 1021 for any questions or to register.

PLEASE PASS THIS ALONG TO EVERYONE YOU KNOW!!!!!

Wyatt and so many others, thank you.

For anyone unfamiliar with Wyatt or his story please visit the following links...
http://www.totsites.com/tot/wyatts/

http://www.metronews.ca/toronto/Live/article/201758

Laura Celsie
Wyatt's Warriors

Please save Sunday October 18 for the Sasha Bella Fund 2009 fundraiser for Sickkids

We are very excited that the Wychwood Green Barns have donated their beautiful new space for for our 3rd fundraiser for Sickkids family centred care initiatives. Wychwood Barns are located two blocks west of Bathurst and St. Clair, one block south on Wychwood. The day will start with a symbolic walk in Sasha's neighbourhood followed by fun events, delicious food and a silent auction. The event committee has met since February and with your support our goal is to raise $75,000 in 2009 for programs helping Sickkids patients and families. If you would like to help with a performance, auction item, event sponsorship or help on the day please email walk @ sashabellafund.com. Thanks for helping Sickkids families! We will post a link to the 2009 registration site in the next few weeks so you can create your own fundraising page.

Wordles - build imaginative care word clouds on the fly

Wordle.net lets you create word clouds for your child and family's care experience. You can easily customize layouts, colors and fonts. The left screenshot is a partial wordle of Sasha's life built by entering words in a text box. You can also create wordles from feeds on websites (try CBC.ca for example). Here is a wordle generated by Sasha Bella Forever blog feed (here is another) . Wordles from feeds can pull esoteric items and favor homepage content. At Wordle you can create a word cloud that allows others to imagine what you experience. It would be fantastic if it also could link words like in Powerpoint, determine their order and allow edits after publishing.

Dad bonds with his baby in NICU with words and songs

Dan Yashinsky shares his story telling in the NICU for baby Jacob on Tapestry. Starts at 1 minute 30 seconds.

"I had this very strong feeling that this may be the only time I would ever get to sing to this son of ours. I just said 'look, I know I am probably not supposed to, and I will be real gentle, but I am not letting my son leave until he has heard a lullaby and he's been rocked'. So I reached in ... maybe a half millimeter each way and just rocked him a tiny bit, and I sang lullabies. I sang 'Dance to your daddy, my little laddie, dance to your daddy, my little boy'.... It was the song I sang to his older brother. He made it through the first night. And I still remember the doctor, a dark haired Irish woman, was explaining this and explaining that to me and I just keeled over. I fainted."

Dan bonded with his son with family stories, songs, lullabies, rhymes and even hours of Chaucer that he had once memorized. "I felt like I was trying to persuade him not to die." He offers a simple aid to parents and especially Dads struggling with hope and fear at the isolette or bedside in those confusing first days when staff seem to do all the care. Share your voice. Offer your baby words and songs as an alternate soundtrack to the beeps and ICU noises. The Sickkids NICU has books to read to your kids, ask a nurse or social worker.

Sickkids Nursing Excellence Awards 2009 and Sasha Bella Awards

The weeks before Nursing Excellence Awards have become a rite of spring for the Sasha Bella Fund as we reconnect with Labatt Family Heart Centre to celebrate family centred nursing excellence.

The 2009 committee comprised of Kathleen Johnston, Ruta Niedra, Sherry Ree Stevens, Carrie Morgan, Mayola Mathew, Mary Beyea, Linda Fazari and Dr. Jennifer Russell.

Three nominees were selected: two Cardiac Critical Care nurses nominated by peers and a Critical Care Core Nursing Team nominated by an interprofessional staff group along with the mom of the 23 month old cared for by the team over more than 11 months. This was our first team award and our first with nomination input from a parent.

Next year we will add one more award to celebrate an allied professional who are so important, such as the social workers, dieticians, respiratory therapists, occupational and physical therapists etc. We also shared news about CCCU family centred initiatives, generating quite a list with considerable staff enthusiasm, and it was a wrap.

Kathleen asked if I wished to meet the family and a few moments later I was back in the shaded and quiet room 53 for the first time since January 2006. In the corner, Lisa Celsie cradled and soothed Wyatt, her incredible 23 month old who has lived almost entirely on 4D and in ICU and continues to surprise everyone. Meeting Wyatt, hearing about the Celsie family care experience and their engagement of CCCU made this day one in a million.