3 years ago...

...today, at this time, I was in a waiting room at St. Louis Children's Hospital, with my family, waiting to receive calls from the OR to update us on Ember's Transplant.  I remember the day like it happened yesterday.  Everything is permanently etched into my mind.  It is hard to imagine that three years ago, she received her gift of life.  While it seems like a lifetime has passed since that point, I also realize that it really isn't that long ago.  We have SO very much to be thankful for in those short 3 years.  She has grown into a beautiful, vivacious, loving little girl.  She is happy and healthy and seems to have no worries in the world.  Above all else, even if we didn't have those other things, she is still here. 

Her donor angel is thought of every day even though we have never had the chance to know his family.  We continue to raise her in a fashion that we would hope her donor family would be proud of.  We talk with her continually about what it means to have her gift and try to explain what the true meaning of giving is.  I have always tried to be the strong one in the entire Transplant situation, but sitting here typing this blog is bringing tears to my eyes.  (That means you have to forgive typos!  I can't see the screen here!) It's hard not to tear up when I think of everything she has been through in her short little life.  She continues to be one of the strongest people I know. 

The further out from Transplant you get, the more relaxed you get.  This means meds are missed, I don't panic if sanitizing gel isn't attached to my hip at all times, and I chalk certain things up to the old say "Schtuff happens".  One thing that hasn't changed is the feeling of gratitude, an over abundance of love, and a realization of how blessed we are.  We have our baby when I know many who do not, far too many who do not.  We have come SO very far in such a short time.  Ember now has a beautiful little sister that she adores and she is no longer allergic to peanuts.  She is doing phenomenal in preschool and loves to spend time learning.  Reading is one of her favorite things to do, so we thought that we would donate books to Children's this year to commemorate her transplantiversary.  Ember approves. :)

It's hard to believe that we went from this: 

To this:

in those three years!

For those of you still waiting for "The Call", don't give up hope.  We are here with you and waiting to welcome you to the other side of transplant.  We hope and pray that your will have the perfect gift at the perfect time. 

My Mother -In - Law found a poem that I would like to leave with.  I think that it absolutely beautiful and says all the right things.

MAY GOD bless all donor families and the precious and loving memory of all donors, for they who give the Gift of Life in so doing demonstrate a deep and very profound understanding of another of God's most perfect gifts to mankind: the Gift of Love.


Without the Gift of Love, the Gift of Life through organ donation could not and would not be possible. May all recipients receive the Gift of Life in the same manner and spirit in which it was given: with love and compassion.

May all recipients continue to privately and publicly display their gratitude for this precious gift, now and forever .

May all recipients share the Life and the Love of this gift, and use it to make meaningful and lasting contributions to society and humanity.

May all recipients live life to the fullest each and every day, and in so doing pay loving tribute to their donors and donor families.

May all recipients do more than merely say thanks, may they be given the strength, courage, wisdom and direction to do thanks through their actions, their deeds and their accomplishments, and by their everyday deportment, at all times showing honour and respect for donors and donor families, who so lovingly and selflessly gave the Gift of Life.

May all recipients seek, find, understand and fulfil the purpose for which they have been so graciously chosen to receive this special gift.

To all donor families and the memory of all donors, God bless you. Thank you, we love you. Thank you for the Gift of Life.

2 years and counting...

I am seriously slacking!  I missed posting about an very important event in Ember's life.  Her two year transplant anniversary.  So, here is a catch up on that as well as a few other things that have been going on since then.

November 18, 2010 marked 2 years since Ember received her life saving gift.  It was a very special day for all of us.  I silently cried that day knowing how truly blessed we are.  I cried because I want to much for her to know her donor family, but I also cried for them knowing how hard it must be for them this time of year.  As I have posted earlier, they moved without leaving a forwarding address with the organ donation agency so we have no way of contacting them.  However, I do think that I know who is her donor and was very tempted this year to try to contact them.  I did decide to wait in the hopes that one day we would hear from them.  I also decided that contacting them on my own would be a good idea at another time in the year.  At this time it might just be too hard on them.  Also, I keep thinking to myself, "What if I'm wrong?".  I would hate to bring more pain to a family than they already have. 

Last year we decided that every year for Ember's anniversary we would get together as a family and go out to a restaurant to celebrate.  We aren't going to do presents or anything like that since, lord knows, the child has more toys and things than she already knows what to do with.  So, this year my mom made green colored white chocolate lollipops that were in the shape of an awareness ribbon for everyone who came to dinner.  They were yummy!  Ember thoroughly enjoyed hers.  I made Ember a cake that was in the shape of an awareness ribbon as well.  Once she saw that, eating anything else went out the window.  The child has the biggest sweet tooth!  And Great Grandma Lola just might have gotten her a present anyway.  It was a cute little snow globe.  Ember loves it.  She is still carrying it around the house and asking me to shake it up for her on a daily basis just about.  It was nice to visit with family and celebrate how blessed we have been. 

Since then, Ember has help us celebrate her sister's 1 year birthday. (6 days after her anniversary) She is also really starting to get into this whole Christmas thing.  She loves all of the decorations.  She even helped Mommy, Grammy J, and Bob decorate the tree this year.  Amazingly it has remained in tact.  Ember even guards the tree from her sister right now.  I sometimes hear her saying "Almond!  No, No" and then she claps her hands twice.  Yes, she calls her sister Almond.  I guess Autumn is just too hard for her to say.  It makes me smile. :)  She is very interested in the neighbors blow up snowman  so we were gifted a blow up Santa for her to look at as well.  She keeps asking us "No pop?" which means that she is asking whether the Santa will pop or not.  We keep repeating "No, Santa won't pop" like broken records. 

Unfortunately, a week ago we went to the ER with her because she developed some alarming symptoms in the span of about two hours.  She had some issues with drainage from her eyes and in a matter of two hours she developed a fever of 101.9, a horrible cough, and she was extremely pale.  While I called the Dr's exchange she sat on Maw Maw's lap and complained that her eyes were hurting.  As I was on the phone with the Nurse from the exchange, she told Maw Maw that her head was hurting also.  So, the nurse told us just to take her to the ER.  So, at 9p.m. at night we were heading to the ER.  When we got there, she was still running a horrible fever so they had us take her jammies off of her.  They did blood work, a chest X-ray, a nasal swab (which made her OH so happy - did you sense the sarcasm?) and looked in her ears.  They told us that her ears were fine and that her chest x-ray and blood work were showing what appeared to be a virus.  We luckily got to come home.  Over the weekend the cough got worse, but the eyes and fevers got better.  However, she lovingly shared her virus with her sister.

After going to see the pediatrician with both girls on Tuesday it seems that Ember now has an inner ear infection as well.  Her first, and only I hope, ever.  Her sister has the virus, but not as bad.  Antibiotics for Ember and eye drops for baby sissy.  Now, mommy and daddy have it too.  I know that I am always telling her to share, but this is one thing she could have kept to herself. 

Hopefully we are all on the mend and will be good by this weekend.  I want to try to take them to see Santa.  Last time we tried to get pictures, it didn't work out so well.  We will see what happens this time! 

Prayer Reqest..

Ember would like to ask any of you who read her blog or my blog to pray for a friend of ours.  His name is Jax and he is currently on the Liver transplant waiting list.  He is 9 months old and has Biliary Atresia, the same disease Ember was diagnosed with.  Jax is not a candidate for a living donor due to complications with his portal vein.  Please pray that someone says yes to giving him a chance at life. 

It is a bitter sweet prayer, to ask for one child to gain a life due to someone else losing theirs.  Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives. 

6 months ago....Thank you

It has been 6 months today since Ember received her Liver Transplant. Though there have been a few bumps along the road, they have been mild and easy to cope with. I think about her donor family every day even though we do not know who they are. I can't imagine living life without her and I am so grateful for everything they did for us. I can't even imagine what they had to go through to save my baby. In the past 6 months Ember has made an amazing amount of progress. She is gaining weight steadily and is really starting to fill out. No more bird legs as Michelle says. :)

It is hard to believe that 6 months ago at this time I was sitting in her ICU room staring at a flat little belly for the first time. It was such a relief to be on the other side of Transplant. Sometime during the night, I cried for my baby and her donor angel. Sometimes, just looking at her, I tear up knowing that she went through more in the first 5 1/2 months of her life than most will go through in a lifetime.

She is now walking with assistance from hands or furniture. I am sure that in a few short days or weeks she will get brave enough to let go and take off on her own. She has never really gotten into the who crawling thing. She takes one or two "steps" of crawling before either rolling the rest of the way or just sitting up. It is amazing that this is where we are today. She is living proof that Organ Donation is the right choice. If you have ever, ever doubted, just look at the pictures on this page.

Thank you to our donor family where ever you are. They sound like such simple words for the sacrifice you made, but they are all we have. We love you from the bottom of our hearts. We keep you and our donor angel in our thoughts and hearts daily.