Monday, May 23, 2005

The "Universal" Language

I believe that I have found the universal language. Yes, we have all heard that "love" is it....however, this weekend I found myself watching others through the eyes of my child. It was the most beautiful sight I have ever seen. She loves EVERYONE. At what point in our lives do we discover that there is evil in this world? I found myself hoping that she would never discover that.

We went to Yellowstone National Park over the weekend. It was an absolutely gorgious day. Every time that I turned around Emma was waving at someone and giving them a smile that would melt even the meanest person's soul. People would stop, wave back at her, and go on speaking to their another language! Would they stop and "talk" that way to me???? So, I had to experiment. I walked up to a group of Asian people who obviously were not speaking English. I smiled at them and waved. They just kept on walking. Then, I went and got Emma from Tim. We walked past the SAME group of people and it was like they turned to silly putty! All of the ooohs and aaahhs! They waved at her. They were "speaking" a language that we all have within us...but, babies/toddlers are the only ones who can "speak" the language to everyone. Babies/toddlers truly are the best definition of LOVE!!!!

Wednesday, May 18, 2005

Princess Power!!!!

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Ready, Aim, FIRE!!!!

The Sippy cup...what a wonderful invention...however, my child does not agree!! One look at a sippy cup and she fervently shakes her head no and pushes it away. No, the sippy cup does not help her to accomplish her "ultimate goal"....squirting anyone who comes near. Yes, Emma has figured out exactly how to aim the bottle at the closest person and spray it right in their face. Not something that you are extremely proud of as a mother....but, does show talent, right?? I guarantee that I am not the only one that is ready for her to make the great switch to the sippy cup.

Thursday, May 12, 2005

A Year in the Life

One year ago today our little family was making our wonderful journey home from our adventure with transplant. Our home was spotless when we got there (wonderful friends and family), our freezers were both full (wonderful friends and family), and we had signs in our entry from our students at school! What an amazing homecoming.

Yes, our Little Emma was finally home. One week short of two months after we left on the plane to get our "new life". You see, when you are waiting for a transplant your life is minute by are left to wonder exactly how long your child will be with you? Will the organ come in time? What will happen to her in the meantime?? I have to say that our "new life" is one of hope and joy. We have had our share of frustrations also...and tears....but, if we had it to do all over again we would not change a thing. Our little girl is here with us to cuddle, love, and smell when she gets out of the bathtub. She is here to yell at us when we do not do EXACTLY what she thinks that we should, here to get into trouble and wrinkle her nose at us when we tell her NO.....we would not change a thing.

Our life is now "NORMAL". I do believe that every single person has a different idea of what "normal" means to them. Our normal includes therapy three times a week, three medications twice a day, a possible hospitilization with every fever, and the realization that this will ALWAYS be our "normal". Luckily, Emma is our first born, so technically we do not know any different. All that we do know is that we have the most beautiful little girl in the world (not that we are partial) and she is FULL of "mooches" for her mommy and daddy (and we cannot get enough of those).

Thinking back over the last year is amazing!! March 19 we received "the call" saying there was a liver. We had a company who offered their private jet, and we met them at the airport (along with many family and friends to see us off). I remember going down the runway, looking through the window, waving at our friends, and thinking "when am I going to wake up????" Is this real??? It literally took us longer to get to the hospital than it did to fly from Cody to Denver. Emma arrived at the hospital, underwent a six hour transplant surgery, came through with flying colors, did great for ten days, and then KABOOM contracted ecoli and 2 bile leaks. She went back in for the scariest surgery...she was so weak! But, she made it...and she was a trooper. She was on 15 meds after transplant...two times a day!! Most of the time she would vomit after her meds, so we would give them again. "Is this reality"???? was my most common thought.

Today, life is great!! Our little Emma is GREAT!!! Thanks for looking back over the last year with me. It is definitely worth sharing!!!

Monday, May 09, 2005

Thursday, May 05, 2005

The Phantom of the Hot Tub

When most people think of the hot tub, they think of a warm, soothing place to relax. The mere sound of the bubbles sends me into relaxation mode. My child, however, has different thoughts about the hot tub. She believes that there is something dark and scary in the hot tub. I know this because even the mention of the 2 simple words send her screaming and clinging to me. Start to walk toward it, and she will literally attempt to climb over my head. At first I thought it was because the jets were going the first time I walked her over to the wonderful hot tub. However, even after we turned it off.....terror! The mystery remains in our house? The child that loves the water, but FEARS the hot tub??? HMMMMM?? Maybe something to do with a "past life"....LOL!

Tuesday, May 03, 2005

Recycling people parts

Teaching kindergarten and first grade has helped me to appreciate that a childs mind is constantly thinking and wondering. Earth Day was on April 22, and I always do a unit about recycling and being kind to "Mother Earth". So, one day we were listing all of the things that could be recycled and all of the things that could not. One of my students said, "You cannot recycle people". Another student piped up and said, "Well, you can recycle people Baby Emma's liver". Such a profound statement from a 7 year old. Good to know that organ donor awareness is being spread through our community by the smallest voices also!!

Monday, May 02, 2005

Is This Reality??

There are mornings when I wake up and wonder if I am on a reality TV show. Maybe I signed up and was chosen, but then I forgot. I think the show could be called How Much Can One Family Take?....or The Last Family Standing. I know that there are many other contestants on this show with us, but they are so far away that we are left to ponder how they are coping with their situation....and is there really anyone going through the exact situation that we are? These are the thoughts that float through my days as I cope with a child that is ill.

Our beautiful baby girl is named Emma. Emma is 21 months old, and she has already endured so much in her short life. She is my hero and my inspiration. She wakes up every morning with a smile on her face, and she can get mischievious in .2 seconds! She is my reason for getting up in the morning, and she is my hope that life will be good again one it has already become so much better than it was 1 1/2 years ago.

Emma was born in August of 2003. When she was born it was noted that she had some unusual characteristics. The "geneticist" word kept popping up. Tim and I didn't think much of it, as the characteristics that were mentioned were also present in us. She was just perfect...that was all we knew. The second night of Emma's life her blood sugar plummeted. Thankfully, the nurse on duty was quick to get help, and Emma stabilized within 12 hours. That event never happened again, but at the time I remember thinking that she was going to die and my world was spinning. Little did I know that life would not stop spinning for a LONG time...possibly never.

We were sent home with a baby that was not extremely interested in eating, did not cry very often, and slept MOST of the time. Within 3 weeks she was extremely jaundice. At six weeks we were sent to Denver Childrens Hospital. I remember her pediatrician telling us just the week before, "There's nothing to worry about. If you needed to worry then you would be on your way to Denver"...and so the voyage began!

We cried the entire way to Denver. Emma got sick 3 times on that trip. We finally arrived at 1:00 AM. We needed to be at the hospital at 7:00 AM. We held Emma so tight between us that night as we had nightmares about what was to be. We admitted Emma to the hospital the next day. Five minutes after placing her in her crib, the geneticist (a man that to this day gives me horrific nightmares) came in and just threw out the name to an awful syndrome. I calmly asked, "what does that entail?" He throws back at me, "Severe mental retardation. She will probably never talk and she will not walk until she is 3 or 4...if that. However, that does not explain the jaundice. There has never been a child with this syndrome that has had liver disease with it". Then, the "wonderful" doctor left. He left us in a dark and lonely place with so many unanswered questions. YUCK!!! Within the next 30 minutes, at least 15 other doctors came in. They were snapping pictures of her, asking my pregnancy history over and over again, they took x-rays, blood draws. THIS IS NOT MY REALITY!!!! Please let this just be a bad dream....remember that my life is PERFECT and so is my child!! DAMN all of you as you are just making this up!!!

Well, Emma had a liver biopsy later that day. She was diagnosed with Biliary Atresia, a liver disease that effects 1 in 15,000 children. She also had blood drawn for the "syndrome" that came back negative (however, only 25% of children with the syndrome will test positive). The geneticist also came back in later that day and told us "he was hedging on this"...after looking at all of the data he just was not sure that she had it. HELLO, THIS IS MY LIFE THAT YOU ARE TREATING AS A YO-YO!!!

When we went back to Denver for a liver transplant evaluation in December of 2003, the same geneticist came in to tell us that he absolutely did not think that she had that syndrome. (that syndrome effects 1 in 300,000 has never been linked to liver, the chances that she has both Biliary Atresia and that syndrome are 1 in 200 BILLION!!!) What are the chances??? So, after being told that exciting news...we were on cloud nine...only to be struck by lightening again!!

At birth, Emma's valve in her heart that usually closes when a baby is born (something to do with the oxygen supply) did not close. We were told that 50% of babies it will not close right away, however it will close within the first 3 months. Right after being on "cloud nine" we were told that hers had not closed, and it was causing pulmonary hypertension. "We will be doing a heart catherization on her tomorrow morning. We will insert a spring into her heart and get the hole to close. Then, we will administer different drugs to see which will react to the pulmonary hypertension". If we cannot control it....she will not be able to be listed for a liver transplant. No liver transplant= death!!!!! NO....MY "PERFECT" CHILD CANNOT DIE!!!

She came through with flying colors. She was listed for transplant, and she received her gift of life in March of 2004. She has a beautiful personality, and she does wake up every day with a smile on her face. However, she is still NOT walking on her own, and she is NOT talking. Even though we have been told "no, she does not have that syndrome" it will linger in the back of my mind until she appears "normal" to me. Is she not doing these things because she was SO sick for SO long...and she just needs time to catch up (please GOD let this be the reason), or is there more to come??? How much more can one family take?? Is this My REALITY!?!? (could it be that she is the "lucky" 1 in 200 billion)... Stay tuned......