Make-A-Wish Day 3

OY! This time of the year is absolutely CRAZY!!! I love it, but I never seem to find the time to do all that I need to do. I'm doing the big school count down...only 3 1/2 days of school left (yes, we do go until the 23rd, crazy, right?).

Anyway, I apologize for the extended intermission between photos. So, here is the slideshow from day 3. We had another incredible day. We started off seeing Minnie and Mickey Mouse. They came to GKTW which was SO nice because there was NO crowd. Emma did pretty well with them (as long as dad was right there with her). Owen however did NOT like Minnie Mouse! He kept hitting her in the face:(. I was in awe because....are you ready for this?......they were shorter than me!!! Even with their big heads on they were STILL shorter than me (I'm only 5'3"...on a good day). So, I think they were a little less intimidating to the kids. Then, we went and saw Goofy, Pluto, and Mary Poppins (also all at GKTW). Goofy and Pluto were OK to Em AS LONG AS her daddy was with her:). Mary Poppins was VERY stern:).

After we got done with the characters we went to the Magic Kingdom again. We rode on Dumbo, It's a Small World, the teacups (Owen was GREEN the entire time we were riding it....and so was I), then we went to see Ariel in her grotto. She was AMAZING with my kids. She spent about 10 minutes with them. She kept asking Em if she had used a "dingle hopper" in her hair (because she still had the wild pop-star princess hairdo).

You can go here http://www.youtube.com/watch?v=cCkErs1iHnE to see Owen with Ariel....HILARIOUS!! He was definitely playing hard to get with her.

After Ariel, the kids played in her splash pad and had a blast! We spent a good part of the day at Magic Kingdom. Then, we went back to GKTW and the kids played in their incredible splash pad and pool! It was BEAUTIFUL! By the splash pad there was a place where you could take the kids pictures. It looked like they were riding a wave. Emma had fun pretending to surf:).

It was another fantastic day! More to come soon!

Make-A-Wish Day 2 part 2

Sorry about the pause in postings...you'd think it was the month of December and I teach Kindergarten and 1st grade while raising 2 small children or something:). Anyway...on to the rest of our trip!

As we emerged from the Bippity Boppity Boutique, we found Daddy with a sacked out Owen...he had had it!....to the point that Emma sat right on top of him....and he didn't even stir:). Anyway, we headed back to GKTW to rest (after Emma had her movie star debut). The kids took a nap at GKTW, then we headed back to the Magic Kingdom for the most magical night ever! We saw the Spectromagic parade (it was very difficult to take pictures of) and then we headed down the street to an amazing firework display that was combined with wonderful music. When it finished Emma announce, "That was AWESOME...I want to see ONE more". It was perfect! She absolutely LOVED it!

It was midnight by the time we got home, but seeing all of the lights (parade, fireworks, AND the way the castle changed colors) was DEFINITELY worth it!!!

More to come soon:).

Make-A-Wish Day 2 part 1

We awoke on our 2nd day of the trip to a BEAUTIFUL 80 degree day! I absolutely LOVED the humidity:). The kids took a bubble bath in the enormous bath tub. They loved the bubbles. After that we all headed to the Gingerbread House restaurant inside GKTW. It was GREAT and Emma loved the Christmas tree so much that she had to hug it every time that we left:). You will see a picture of the awesome shaped foliage (the heart shaped bushes). Next, we went to the big Mushroom carousel, and Em loved riding the magical reindeer. Owen and I got to ride the rooster (it was the only 2 seater). Then we went in the castle of miracles. This is a magical place where the wish child gets to put a star in the ceiling that has their name on it (we didn't put Em's star up that day....I will post about that later). However, in the casle of miracles there is also a Pillow factory where both of the kids got to make a pillow for sweet dreams. They push all kinds of buttons, and it plays music and bubbles come out, then a pillow pops out of the bottom. Emma got a pink pillow with ballerinas on it, and Owen got a red pillow with dinosaurs. In the castle of miracles the wonderful volunteers also put on a puppet show for us, and Emma and Owen got to pretend they were the King and Queen for the day:).

Next, we were off to the Magic Kingdom (yes, this was a VERY big day!!....so much that I am going to have to make it 2 posts). Emma had her Princess Make-Over at the Bippity Boppity Boutique. Of all of the hairdos that she could pick, she chose.....are you ready.....the POP STAR PRINCESS that made it look like she had fireworks coming out of the top of her head. Who am I to stop a pop star princess, right?? Her make-over was in the Cinderella Castle, and it created a wonderful memory for all of us!!! On the way there we ran into a parade....where you will see Sebastian the Crab (love him). All of the parades at Disney are AMAZING!! UNBELIEVABLE!!

You will also see a picture of Em riding in a yellow sports car convertible:). Of course it is just a toy....but, they had it right outside of the main building at GKTW!! We laughed about that every day. It was too funny!

I will post more later today, but enjoy these pictures for now:).

Make-A-Wish Day 1

The best word that I can think of for our trip is WOW!!! It was absolutely magical, and I want to remember and share every detail of it. Emma was just a "normal" "typical" kid for a week. No hospitals, doctors visits, therapies. She was a princess in everyone's eyes that saw her. She just glowed the entire trip. She made memories that will be with her for a long time. WE made memories that will be with us FOREVER! I cannot say enough good things about the Make-A-Wish organization. The entire trip was flawless. Every single detail was thoroughly thought out and planned. WOW!

I hope to share on here in the next few days the highlights of every day of our trip. Day 1 was really a travel day. We left our house at 4 am and arrived in Florida at 4 pm (our time). It was a VERY long day, but our kids were troopers. I was very proud of how they traveled there and back. Give Kids the World (the place where we stayed throughout the visit....AMAZING place!) had a greeter (Ms. Dee) meet us at the airport. She helped us find our bags and took us to our rental car....then, we were off!!! Emma really thought we should have a yellow convertable race car, but she settled for our blue mini van:). OY! That girl's got some expensive taste:).

When we arrived at our villa (2 large bedrooms, 2 bathrooms...one with an enormous jacuzzi tub, a kitchen and living room...AMAZING) there were all kinds of snacks in the fridge for us.....and there were gifts for both of the kids! Emma got a plush Mickey and Owen got Shamu. There were also some other gifts there. The weather was fantastic!! 80 degrees...I LOVED it! Tim and I went to an orientation about GKTW that night....then we ran to Wal-Mart. It was the first of many REALLY late nights:).

Enjoy!

Difficult Situation

The perfect placement for my Em has turned into a difficult time in my life. We worked hard to get Emma placed at the school where I teach. I teach in a rural school. We only have 27 kids grade Kdg. through 5th, and it truly is a wonderful place. The kids at our school are like family to each other. Sure they bicker from time to time....but they also look out for each other, and that was the main reason that I wanted Emma to come to our school....that, and one of my good friends is the special ed teacher and I have always thought her to be one of the best. However, there are so many issues right now that just do not feel right....and it puts me in such an awkward situation. Why are there NO BREAKS when you are the parent of a child with special needs? Why do I always feel like I am walking straight up a mountain and conquering every single obstacle along the way. I am proud of where I have come from, and I am amazed that I have conquered the obstacles that I have....but, I need a break...I need some time to breath and I need some moments where I do not need to worry. I KNOW that those moments have been there and they will be there again....but, right now I feel like I am drowning. I feel so helpless, and I HATE to not feel like I am in control.

12 LONG days to go

"Only" 12 days until we take flight on the adventure of a lifetime. Yes, we have been planning this crusade for more than 6 months....so 12 days should seem like a walk in the park, right??? WWWRRROOONNNNGGGG!! The closer it gets...the closer Emma thinks it should be:). So, we made a paper chain to show her how many days we have until we leave to see Minnie Mouse...you know...so she can visualize it to SEE how many days there are until we leave. Well, tonight she came up with the brilliant idea (really it was quite savvy) that we can just, "Cut off all of those papers and we can leave tomorrow". Yep, what do you do with that one?

I am really enjoying watching videos about different characters on YouTube with Emma. Emma has always been petrified of anything that has a mask....and Santa Claus??? She is extremely excited about seeing Minnie Mouse, Mickey Mouse, Goofy, etc. But, I wonder when she sees them if she will freak? So, I am doing everything I can (hence the dressing them up as Mickey and Minnie for Halloween) to get her used to seeing the characters including size, costumes, etc. I really hope that it eases her anxiety because there will be many masked characters as we travel through the different parks.

OK, maybe I'm having a hard time about thinking about 12 more days too! For some reason I had it in my mind that we were leaving THIS Saturday. Do you think if I just cut those extra chains off of the paper chain that those days will melt away?? I don't think I'll try it though because I truly think that I NEED the visual also:).

Does it make me a bad mom?

Tonight....I got "the look"...you know the one...the look where other parents look at you like, "I would NEVER do that". I wanted to just yell, "Never say never!!!" and stick my tongue out at them:). That would be the mature way to handle it, right?

OK, here's the scenario...and I want your honest opinions on this. So, Tim had to work late tonight, and we got home later than usual. I was bound and determined to work out, so I did. Then I remembered that we had to pick up Emmas $850 (UGH!) medicine before 6:00. So, I got both kids in the car and I decided that I really wanted Subway for dinner. So, I drove to Subway and I parked right outside the window. I could clearly see my children (who were safely buckled in...and have not figured out how to get out), and I ran into Subway to order my sandwich. There was only one person in front of me. As it became my turn I looked out the window to see a car park next to mine. A couple gets out of the car, and they get their child (single child with 2 parents) out of the car. Then, they both look into my car to see my children and the mom shakes her head. They came into Subway and gave me "the look". Then, I noticed that the lady was pregnant. As I walked past the couple on my way out I just smiled at both of them and thought.....You just wait!

What do you think??? Bad mom??? It's OK tell me the truth...I have thick skin (wink wink).

Happy Halloween!!

M-I-C-K-E-Y M-O-U-S-E
Mickey Mouse (and Minnie)
= SO MUCH FUN!!!!!

Marvelous...or Mortified???

Look at this sweet face....then, listen to this story....

When you are a parent, and you are told that your child will never speak you brace yourself. You mourn the future that you saw for your child, and you begin to reconstruct a new plan, a new path to travel to help your child in every way. You work, you cheer at each milestone, you shed many tears, and finally a tiny light is in the distance. The words begin to come, and you feel victorious. You have been your child's best cheerleader and biggest fan. Now, you see the voice coming to life and you are so incredibly proud.

Then, it happens.....the words that you have only spoken once (in a very heated argument with your husband because you VERY rarely curse) pop out of that sweet child's mouth.

The other day Emma was going out to recess and someone came by and popped the ball out of her hand, and she yelled at them...are you ready for this....."THAT'S BULLSHIT!!!" (Oh yes, she did....and remember that I'm the teacher too). So, I talked about how that is not appropriate. That night her dad talked to her about how we don't ever say those words because they are not nice words.

So, the next day we got home from school and Emma climbed up into her dad's lap. She looked up into his eyes and said, "I was a good girl at school today Daddy". He said, "That's very good Emma". She said, "I didn't even say any bad words". He said, "That is very good Emma. I'm proud of you". Then, she gives him the sweetest smile, and in her cute little voice said, "I didn't even say Bullshit Daddy". OY!!! What do you do with that?

So, the battle from within....I said that I would always be happy no matter what she said. or how much she said....as long as she would talk. I would never EVER take anything for granted. So, yes I am the mom who thinks my child is marvelous...even if she DOES say Bullshit, yet I am also the Mom (and teacher) who is mortified that my child said BULLSHIT!!

18 months

Dear Owen
Wow! I can't believe that it has been 18 months since your grand entrance into this world! What a blessing your arrival was, and you continue to bless our lives every day. You are becoming such an independent little toddler. It is so much fun to see you exploring your world. Here are some of the things that you are doing:

*You love to listen to music and dance...your current favorite is Backwards by Rascal Flats...as Miss Donna (daycare) says, "You've got the rhythm...you just haven't quite found it yet".

*You love to take things apart, but become really frustrated when they won't go back together.

*You really love sleeping with your mom and dad. You've only come to our bed 2 nights, but last night (the 3rd night) I decided you needed to stay in your own bed all night...and you cried for 6 HOURS!!! Who needs sleep, right? Tonight (so far) you have gone to sleep like a champ.

*Usually your bed time is 7:30 and you sleep until 6....much better sleep schedule for your mama:).

*You love waiting for your daddy to come home so you can help him with things around the house. You are quite the fix it man.

*You are saying so many words. You add a new one every day, and I am amazed at your enunciation. Your current favorites are Dora (the dog at daycare), doggy, mommy, daddy, Memmy (Emma), Uh-oh, look, see, there go (there you go), hi, bye-bye, dee doo (thank you), night night.

*You love to run away from me when you have something that you are not supposed to have (and laugh and laugh while doing it)....like the remote control from the TV.

*You often throw various things into the garbage (my cell phone, the remote, numerous toys, etc.).

*Dirt is your best friend...mixed with water is even better.

*We cannot forget the number one thing that you love to do....torment your sister....and she loves to do it right back. I enjoy watching the two of you interact and grow together.

Yes, life is wonderful! We are enjoying you to pieces little man. You and your sister have completed our little family, and we couldn't be more happy.

Love to you on your 18 month birthday,
Mama

The Changes of Fall

Fall is upon us and that means many changes. As I look out my window I see brown with a touch of green around the edges. This is usually one of my favorite times of the year, with all of the beautiful colors of fall. However, this year we had a major cold spell (10 degrees F. for 8 days) that made our fall colors non-existent. We are now back to fall-like weather...without the colors of fall. It is a little unsettling in reality.

We've also had some unforeseen changes in Emma's health. It seems just when we think that we've got her little immune system figured out we're hit with another whammy. Sometimes it just seems like I'm waiting for what is to come next. I had finally moved beyond that feeling when I received the phone call from our transplant coordinator saying that her numbers are off again, and we would need to start monthly infusions (4-5 hours each time) for 4-6 months. I have to say that it came as a bit of a blow, but I have regained my ability to see things optimistically and this is just another bump in the road. I know things are going to work out just fine. Emma is a fighter, and I wish that I had half of her strength...I really do:). So, here we sit today with Em hooked up to an IV and watching the Little Mermaid. Fingernail painting, beaded necklace making, and smelly stickering to come:). Let the fun times begin:)

Our excitement is mounting with the approaching Make-A-Wish trip that Emma (and all of us) have been looking forward to since May. We will leave on November 21st for Disney World and return on November 28th. We are all very excited! Emma and Owen will be Mickey and Minnie Mouse for Halloween:). Pictures will be coming.

When we first were contacted by Make-A-Wish we were very hesitant about having Emma accept a wish. However, after much thought and consideration we decided that Emma absolutely deserves this. She is going to have the time of her life. And, while she is not terminal right now....and hopefully will have many many many more years of happiness.....her health is more fragile than the average child. She endures countless blood draws, medications, and hospitalizations....more than most of us as adults have undergone. Therefore, we do feel that she deserves some time to just be a kid....in the greatest place on Earth. I am looking forward to seeing the sights through her eyes and watching the magic ignite.

Here are a few pictures of Em and Ow playing in our crunchy brown leaves:) (the pictures are having trouble). We are enjoying the fall weather....even though we do not have the fall colors. We hope that you are also enjoying your fall.

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!

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:).

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: