Archive for December, 2008

Isabelle, we miss you

Wednesday, December 24th, 2008

The 24th of December is a special day for us, in itself and, traditionally, an even more special night. We once had a dream that we would get a donor by this date (or even on this day). It was our greatest wish and hope to receive that special gift of life for our sweet Isabelle. Tomorrow, it will be two weeks since we lost our dear Princess to the battle of heart failure. It’s been extremely difficult for us to get into the Spirit of the season. We know that a lot of family’s out there will be wishing for the same gift we were: the gift of life. We cannot change what happened, but we can share our story and our wishes that other children are able to receive the “gift of life” in time. The facts are daunting that too many people die while waiting for a donor. The decision to give life is in your hands for the rest of your life. We hope and pray that you decide to become a donor and you express your desires to your friends and family.

I wish I could share some deep words of meaning or some witty poem about the spirit of giving. I wish that I could say something special during this time that would bring joy and extra meaning to you. I wish that we still had our Isabelle and that she could sing and dance again. I wish that all those people (like all the nurses and therapists) could have really experienced Isabelle in her fully glory. She was such a charmer and was so warm-hearted. I wish that I could see her face as she opened up some presents this year and snuck in a few pieces of chocolate or a candy cane. We wish that we could hold her for a little while and give her lots of hugs and kisses.

We’ve read the posts on the guestbook from the many people who have followed our story. We’ve read the nice hand-written words you’ve put on the sympathy cards you’ve sent. We’ve enjoyed the home-cooked meals that some of you have given us. We’ve shared tears with some of you. We’ve read the nice prayers you’ve sent. We’ve been humbled by the gifts and money that you’ve sent us, too. The flowers and their fragrance are slowly fading, but the love you’ve given us is still strong. The support has helped make a difference. We cannot imagine going through this alone or with minimal support. The support has shown us how much you care and how much you are hurting…you are grieving with us, you’re sharing our pain. Some of the people that have reached out to us read about our story in the paper or heard about it from a friend. Some of you we’ve never met. That’s amazing. Isabelle touched so many people and we keep getting amazed each day. I guess that’s what makes it so hard. Knowing that she touched so many people, but also knowing that those people won’t get a second chance to see our cutie pie in action. See her work a room over with her charm. See her giggle so much she turns blue. See her cackle as she does something really silly and then teach her sister how to do it.

The loss of Isabelle is far reaching and complex. We share the loss together in many ways. We each feel our own personal loss, but we also feel the loss on behalf of others (sympathy and empathy).

We ask that you keep sharing the story of Isabelle. We ask that you consider the “gift of life”. We ask that you stop what it is that you are doing and go tell someone how much you love them. Do not miss the chance to enjoy life and enjoy your loved ones. Give out extra hugs and kisses. Cuddle with your children. Give some extra attention to your pet. Encourage your children to enjoy life to it’s fullest, let them dance, let them sing, let them make mistakes and help them when they need it.

Thanks for being there for us.

With love and warm wishes for a happy, healthy and safe holiday season, Chris, Amanda, ^Isabelle^ and Elorah

Love

Thursday, December 18th, 2008

Love.

That’s the best and only word to describe what we’ve witnessed over the past 6 days. We’ve been given so much love we’re floating on it. We’ve been completely encompassed in support and care that we’re overwhelmed (willingly overwhelmed). It’s so extremely comforting to have such a wonderful group of family and friends (like you all) out there. You’ve given us so much support, that we’re moved to tears (often).

We loved seeing all of your faces at the Vigil, Visitation and Ceremony. We enjoyed sharing stories about Isabelle and we also enjoyed having you there to witness the joy of Isabelle and the celebration of her life.

Thank you for all the nice things you’ve said to us and all the nice things you’ve done for us. For those of you who could not attend, we will be posting pictures of the setup as well as copies of the paper program. As many of you noted, we wanted to really celebrate Isabelle’s life and emphasize the things she enjoyed. We noticed that many of you were glued to the home video, so we’re going to spend some time and post more videos of our special girls.

Again, thank you so much for all the love, support and prayers you’ve given us. God could not have given us a better set of friends and family like YOU.

May God bless you and your family, especially during this season of Love of sharing.

With love, Chris & Amanda

Visitation and Funeral in Eudora

Monday, December 15th, 2008

Please note that the Visitation and Funeral are in Eudora. The address is:

Warren-McElwain Mortuary in Eudora, 1003 John L Williams Dr, Eudora, KS

It is one block east of Peach St and off Rd 1400. You cannot miss the building because it’s standing alone on the south side of Rd 1400.

Isabelle’s Services

Saturday, December 13th, 2008

Here are the details of Isabelle’s services - all in Eudora:

Vigil: 12/13, 5pm, Our House

Celebration of Life: 12/16, 5-7pm, Warren-McElwain Mortuary, Eudora, KS

Funeral Services: 12/17, 10am-12pm, Warren-McElwain Mortuary, Eudora, KS

Her obituary will appear in the following papers: Lawrence, Eudora, Topeka, Kansas City and Council Grove.

Memorial contributions to the Isabelle Ellis Memorial Fund via the Warren-McElwain Mortuary (http://www.warrenmcelwain.com/contact.htm). You can also visit the website at http://www.heartofaprincess.net/help.htm.

Thank you so much for the amazing amount of support you’ve shown us past and in our greatest hours of need.

Vigil, Saturday Night at 5pm

Friday, December 12th, 2008

Amanda and I thank you all for the huge influx of love, support and prayers.

Friends and Family are planning to hold a candlelight vigil for Isabelle tomorrow night (December 13th) at 5:00 pm at our house in Eudora, KS. Address: 1102 Peach, St, Eudora, KS

There is some street parking in our neighborhood and there will be some shuttling being done from Nottingham Elementary on Church St. People are encouraged to park there and they will be shuttled to our house. Nottingham is 6 blocks away, so arrive early to allow for best shuttling.

Princess Isabelle…We Love You

Thursday, December 11th, 2008

Just after 8 pm, Isabelle was given her Angel wings. A chariot pulled by unicorns carried her off as an entourage of magical creatures, Princesses and Princes followed closely behind. Isabelle has gone to heaven to be with God and we will miss her dearly.

Thank you for the prayers. We love you all.

More information on her services will come soon.

Our Beautiful Princess Isabelle

Thursday, December 11th, 2008

We have no idea how to say what we need to say, so we will keep it very simple: Isabelle is not having a good day. She had blood pressure issues and her heart went into arrest again this morning. They got her back, but the arrest was around ten minutes. She is currently stable, but they are going to assess her neurological function in four to five hours. We fear that this event will take too much of a toll on our little Princess.

We don’t know what the future holds for Isabelle, but we pray that she be happy and comfortable. We know she is in God’s hands and we know that she’ll be well taken care of no matter what.

Mom and Dad are spending time with our baby girl and reading stories to her, giving her kisses, huggies and all the special attention she deserves. We love her with all our hearts and we always will.

The wait continues

Wednesday, December 10th, 2008

Isabelle is stable, but she’s had blood pressure issues today. She’s been peeing well, so we’re happy about that. She was put back on the paralytic so that her body can focus on healing. They turned off the Bair Hugger (warming blanket) and they’re watching to see how she holds her temp.

They changed around her antibiotics yesterday to better treat the little infection she has from the trach. That will be one good thing to get off our plate.

She got visits again from OT and PT today. It was hard, but we had to send them away because we’re battling blood pressure issues today.

Fox 2 News from St Louis just finished up an interview with us. They are putting together a story about her and another girl that just got a transplant. Hopefully the story will be ready tomorrow and I can send out the info to you.

Finally, I wanted to amend the organ transplant / donor matching info that I’ve been telling everyone. After talking with the transplant coordinator I found out that they do not care about tissue matching at this hospital. That means it boils down to: size (age), size of the heart and blood-type. With tissue matching out of the equation, then we’re open to more donors. However, we’re still technically behind another child on the “wait time” factor.

The more I learn about the matching process, the more it confuses me.

Thank you for all the wonderful things you’ve done for us. The gifts, the well wishes, the prayers upon prayers, the forwarding of our story, the selling of bracelets, the visits, the emails, the poems, the auction donations and so on. You’re a wonderful group/network of people and we’re fortunate to have you. Let the prayers for a donor continue.

Need help finding a donor

Wednesday, December 10th, 2008

We need to find a donor.

I cannot express the severity of Isabelle’s situation, but it’s apparent to anyone who has spent a few min in the room with her. Her heart is getting worse. We’ve asked so much from her poor tired heart and we’re asking even more. The absolute priority is to get her to transplant, but it’s hard when her heart is so tired and having so many arrhythmias as a result.

We are asking any able bodied person to help us get the story out. It is our hope that if we spread the story far and wide enough, that our chances of getting a donor will increase. Donors typically come from within 250 miles of the recipient, so we need to target: St Louis, Kansas City, Des Moines, Memphis, Springfield (MO/IL), Indianapolis, and even Nashville. We want to get the word to the people so that Isabelle could be picked as a possible match.

We ask for nothing else at this point and we need nothing else. We need to find a donor.

Since I made this post I learned that there are no good samaritan donations for hearts in the USA.

“Back in the ball game”

Tuesday, December 9th, 2008

Isabelle had a good night and she’s still stable. She’s battling the infection she got from the trach with antibiotics. Her breathing will get much better after that is out of her system. She moving a lot more today and she’s making some faces. Last night she made a grimmace in pain and today she’s moving her mouth around more.

She’s under a Bair Hugger, which is helping keep her warm. Her body is working to figure out it’s internal temp so she’s a bit on the cool side. That should right itself in time.

She just got a visit from Physical Therapy and she got some range of motion exercises done. Isabelle was moving and squeezing her hands. She has some edema in her skin so movement will be necessary to get that off again.

Her head Dr told me today that “we’re back in the ball game”. So, the wait for a donor resumes. We hope and pray to find one soon because this wait has taken it’s toll on our little Princess for sure.

Today we made the Topeka Paper: http://www.cjonline.com/stories/120908/kan_365359793.shtml. Isabelle was born in Topeka at Stormont-Vail, like her father and her grandmother. We are so glad that our story is continuing to spread across the Heartland.