Tuesday, September 22, 2009

Best Summer Weekend EVER!!

Just to give you a little glimpse into our fabulous weekend....here are a few pictures. We went to a campground about 100 miles from home. Our campsite had a creek running RIGHT behind it....and the kids LOVED it! It was about 90 degrees and perfect weather for splashing about in FREEZING cold water (why is it that kids tolerate it so much better than us? They watched Daddy fish, we saw a spectacular waterfall, made smores, and just enjoyed our little family. Life is good!!

I had the greatest A-HA moment while we were camping. Em jumped off of a log and shouted, "Yeah Baby!". It just sparked my memory that last year at this exact time...her PT was THRILLED that he got her to say that....because it was a 2 word utterance. Up until that time she was only saying single words. It is amazing because now I can carry on full conversations with the girl...and I LOVE every minute of it. Yes, she does ask the same questions over and over and over at times.....I don't mind one bit! I just cherish every word.

The beauty from the weather and our surroundings just added to the beauty of the days. Life is good...and we are loving it!
Sweet Home away from Home
It's great Dad!
Sibling FUN!
Daddy teaching:)

Friday, September 18, 2009

She's a Trooper

Once again Emma showed me the fighter that she is. No crying as she sat and watched them put the IV in, and when she woke up all she wanted was Pizza hut breadsticks. That' my girl! We're going camping now and she is so excited. We won't have results until Monday. I'll post then. Have a great weekend. We will be enjoying our girl (and our boy too of course).

6 years ago today....and again....

Today is a day of remembrance, and one that I would like to forget. However, I know that words that I heard 6 years ago today have helped to shape me into who I am today. I know that today I am a much stronger person than I ever knew I could be, and my daughter is the strongest person I know. 6 years ago today we first heard the words Biliary Atresia and Kasai. Emma went in for her first procedure (a liver biopsy) 6 years ago today. She was 6 1/2 weeks old....and weighed 6 1/2 pounds. Yes, the first time that I handed my baby girl over to someone that I didn't know to find out what was wrong with her....why she was yellow...was one of the most difficult times of my life. I also remember that day because it was the first time that my baby girl smiled. Tim and I were both in her room with her.....getting ready to say good-bye to her....and she looked up at us and smiled. It gave us hope. We knew that everything was going to be OK.

Fast forward to today....as we sit here waiting....trying to explain to her why she can't eat until after we get her "pictures" taken. Today, we will once again hand her over to strangers to find out if there is anything wrong with her....why she continually is getting sick (2 months now), and why her blood work is "off". If I said I wasn't nervous I would be lying. If I said that I thought today would be easy...I would be lying. I'm always nervous when she is put under, and today we are going to be in our home town hospital. While it will be close to home....they do not specialize in children, and that has me just a little bit nervous too.

But, Em will pull me through. She'll look at me with that beautiful smile that I saw for the first time 6 years ago today and she will make it through with flying colors. She's my miracle and my hero.

If you have some extra thoughts or prayers for my girl today they would be GREATLY appreciated. She'll be sedated for a head and neck CT in 2 hours. I'll let you know how it goes:).

Thursday, September 10, 2009

1st Day of School...A Success!

Wow! Where do I start? It has been so long since I last blogged....and life is absolutely INSANE!!! However, it's all good...it's just life:), and most of it I am loving:).

We started school on August 28th. Em started her 2nd year of kindergarten in my class....right alongside her best buddy Brindi. Life is good in Emma's eyes. That's all that really matters, right? She has had a few (OK quite a few) physical interactions with her classmates, and we are really trying to curtail those (diet and drugs...good combo right). She LOVES school, but it breaks my heart when her classmates don't want anything to do with her because she is so physical right now. OUCH! It stings a mama's heart. So, we are working on it.

Emma is also in the midst of some medical issues. At her last yearly transplant exam it was found that her EBV (Ebstein-Barr Virus) titers were elevated. So, they wanted to watch them for a month. Well, they were still elevated a month later so they put her on an anti-viral medication (at $700 a month...YIKES!). Well, she has been on antibiotics on top of the antiviral for 2 months now. The DAY after she gets off of antibiotics she spikes 104-105 degree fever! UGH! So, next Friday the 18th she will be getting a CAT scan of her head and neck (to check her lymph nodes) they are basically looking for a post-transplant lymphoma that can be present in post tx patients. I am living in denial!!! I am thinking that they are just being overly cautious....over-reactive!!! But, this is the GI doc that has followed Em since transplant, and I KNOW that he doesn't overreact. I know that this is possibly serious. But, I don't want to put the cart before the horse, so I am choosing to remain calm. YEAH for me!!! This is a BIG step!!!

On a VERY positive note! Our speech therapist told me the other day that the therapy team considers Emma a "success story" because she has come so far in the last year! She thinks by the end of this year Emma will be completely articulate. WOW! That is AMAZING from a child that had approximately 20 words at the beginning of last year! It is SO awesome to actually have conversations with her now and to hear her opinions on things! It is truly incredible....something that I thought might never come!

I'll try not to stay away so long the next time! Life is really just crazy right now. The thing that we are most looking forward to is Emma's Make-A-Wish trip that will take place in November. We are going to DisneyWorld during the week of Thanksgiving. Emma is counting down the days until we see Mickey Mouse and the princesses. It is going to be SO much fun!!

Here is a picture of Miss Em on the first day of school:
Em's 1st day of school 2009