Archive for the ‘Site’ Category

Spring is upon us

Tuesday, March 17th, 2009

I apologize for taking so long to post an update on our activities. Things have been developing at a steady pace and we are ready to share some of the details of our projects.

First, the St Louis Children’s Hospital had a Memorial service for parents, family, friends and staff. Memories of lost love ones were shared, and so were many tears, tears of sorrow and tears of hope. A special reading was done for Isabelle by a wonderful Chaplain there named Connie Madden. I plan to post the reading on the website (on the Celebration of Life page). Connie added a story about a time when she had a special princess tea party with Isabelle. Many of the CICU staff attended the service and a candle was lit and they said Isabelle’s name several times. It was a very special event. We could not make it but we can feel the love and warmth. We hope to go back to the SLCH CICU someday and say Hello to the wonderful people we met while we were there.

Next, we have officially formed a charity in Isabelle’s name. It is called “HOPE” or the Isabelle Ellis Memorial Fund. Details can be found on the “how to help” page. We setup the charity so that we can help others. We plan to setup scholarship funds and to sponsor projects that help other families in need. We’re working on laying out the full details on the “how to help” page (so stay tuned), but the fund is official and it’s accepting tax deductable dontations via various payment methods. See the page for more details. We thank CharitySmith.org for helping us accomplish our dreams of memorializing Isabelle this way.

Isabelle’s memorial headstone is in it’s procurement phase. Once we know the date for installation we plan to setup a memorial service. We want to make this a special event so we have some fun things planned, including a poetry reading and a butterfly release. We want to do this because it was so cold on Dec 17th and some were not able to attend. It will be nice to gather and remember our favorite Princess…our Warrior Princess.

Also, we have officialy joined in the Lawrence Adopt-A-Park program. We have adopted South Park through 2009. Once we confirm the dates, we plan to publish them and recruit help! So far we’re looking at every second Sunday of the month from April to November. More to come on this. Isabelle loved parks and so we plan to help make a contribution to area parks in her honor.

Also, we have signed up to participate in the 2009 American Heart Association Heart Walk. You can view our donation page via http://heartwalk.kintera.org/kansascity/isabelleellis. We hope to raise money for research and education towards fighting heart disease. If you would like to join us on the walk or you would like to make a donation, please let us know! The walk is May 30th. More details to come regarding this event.

Spring is definitely coming and it was Isabelle’s favorite time of the year. She loved gardening with Mommy and helping Daddy with outside work. She loved planting flowers, cutting them and putting them in a vase. We still have the last flowers she cut. The last thing she planted in the garden was spinach and it’s now coming up. It’s a reminder of the new life that comes with spring. The flowers she planted last year are coming up, too. Dafodils, hyacinths and crocuses. Soon her strawberries will start blooming. Isabelle loved going to the garden and picking strawberries. The strawberries never made it back into the house! :)

Elorah is sprouting up, too. She has started going outside to play in the sandbox and to help with the gardening. Elorah talks a lot about Isabelle and her favorite activity is watching home movies of Isabelle. Elorah loves watching her sister laugh, play and smile. It will bring a smile and giggle to Elorah every time and she never gets bored of watching the movies. One time she even waved at Isabelle and said “Hi Isabelle”. It’s enough to make you cry. Elorah has a different understanding of things and she seems to know that Isabelle is ok now and that her spirit is still near all of us, watching over us and taking care of us.

Look for another update soon with more details about all these activities we’re working on!

With love, Chris, Amanda, ^Isabelle^ and Elorah

More things to share

Wednesday, January 7th, 2009

Hello everyone, I wanted you to know that the following things are now available on the website: Eulogy (click on the link in the Funeral paragraph on the Celebration of Life page), more videos (see the Photos page), and the Funeral pictures (see the Photos or Celebration of Life pages).

Please feel free to leave comments here or on the guestbook. If you have something to share with us, please us the Contact page.

Thanks! God bless, Chris & Amanda

Web site fixes and Silent Auction

Friday, November 28th, 2008

I have received a lot of suggestions about the website, please keep them coming. I will try to make changes that best suit our goal and intentions. I am always open to suggestions!

I’ve made the fixes that some of you have found (broken links, type-o’s, etc). I am usually in a hurry to make updates and I don’t have a fancy development environment or testing team so if you find something wrong, please send a note to contact@heartofaprincess.net. I really appreciate your patience with all the changes we’ve made in the past 2 weeks!

The Silent Auction is looking great. If you have something you want to add, PLEASE ADD IT ASAP. Send a note to donate@heartofaprincess.net and we’ll get it up there asap. I love some of the items and I hate to say but I’d bid on several if I could! LOL! I love the Chevy Chase poster and the hand made items! There are some very talented people amongst the donator group. We love the quilts!

Thanks so much for all your support! Regards, Chris (Isabelle’s jungle-gym, play-bot, all-in-one)

Good day!

Tuesday, November 25th, 2008

Isabelle is VERY happy. She gave a “thumbs up” after she was taken back to her room for recovery. The trach is in place and the breathing tube in her mouth is GONE. Isabelle was “moving and shaking”, wanting hugs and even almost cracked a smile. We are certain that the smiles will continue to come more and more. She’s already looking much happier!

We’re going to start planning for more OT/PT and now some speech therapy. Isabelle has the energy and the interest so we just need to cut her loose now!

Meanwhile we continue to wait for a donor. One of the kids that was “in front” of Isabelle got a transplant last Friday so we know that our time is closing in. Our journey highlights the absolute importance of organ donation. I am the biggest advocate I know for organ donation and I am one of the only people I know that actually has “Organ Donor” on his drivers license. Please think about becoming an organ donor and please consider organ donation for your loved ones should something happen to them. Give life…

Blog Admin Note: there is now a “Subscribe” link on the right side of this page. Please become a subscriber! This will become the long term care page for Isabelle so please register.

More strength and more slideshows

Saturday, November 22nd, 2008

Isabelle had a good day and she’s making progress on the ventilator wean. She sat in the chair and her strength and endurance are increasing each day. We would be so happy if we could get a special gift for Thanksgiving and be able to hear her voice again. Isabelle got a special visitor today, too. A former teacher from her daycare was in town and brought by a neat “wooden doll” toy that allows you to dress it with little magnetic clothes. Isabelle just loves and she loved the visit from Kelly, too.

I put up two new slideshows on the photos page. I am sure you’ll enjoy them. You can really see how much Isabelle has already been through, how far she’s come and I haven’t covered this year.

We know times are tough and the economy is not doing well. We really appreciate the donations we’ve received. We know that you’ve had to dig deep to help us out and really appreciate your generosity and we cannot thank you enough. Thank you for all the thoughts and prayers, your support has been amazing.