Trevor's MAW trip!

The reason for this trip is that my son, Trevor, was born with a congenital heart defect. In May of 2012 we found out that he would be granted his one true wish!! He has a slight obsession with Star Wars so that is what has led us to Star Wars Weekend in Orlando! We have been looking forward to this trip as it is our first family vacation and to experience Trev's wish to Star Wars Weekend. You can learn more about Trev here: http://www.disboards.com/showthread.php?t=2960002

We decided to take a red eye so we could enjoy 7 full days in Orlando. We had a shuttle van come pick us up at 6pm on Saturday night. Here we are SO excited for Trev's wish to come true! And to soak up the sun... Little did we know that we were leaving the nice weather behind us...


All loaded up and ready to go!

This was the first time the kids have been on a plane AND the first time we have gone on vacation... I was a little nervous about the 5 hour flight but they did WONDERFUL!! Allie and Kara slept about an hour and a half and Trev about an hour! My Dad luckily slept the most of the flight. Scott got about an hour in. As for myself I had not slept since I had woken up at 7am that morning!


Here is Trev in the cockpit! His sisters had the chance too but they declined On the way down we ended up getting comped the movie players and free food... The downside is that it was the middle of the night so we ended up getting a cheese/fruit platter to share and the kids did watch one movie before trying to fall asleep... Who was I kidding thinking they would sleep on the plane!?! They were awesome during the whole trip though! There were a few other young kids on the plane and you did not hear them either! The flight was a little rough in spots. There was a 2 hour stretch where you could feel the turbulence the whole time! I was really wishing I could be sleeping at that point

We arrived a few minutes early which was wonderful news to me! The kids enjoyed the take off and landing. They couldn't wait to do it again! It was 5:58am when we arrived in Orlando. We took some more pictures with the pilot and crew. Then we made our way into the airport. We were suppose to be greeted by a GKTW volunteer but did not see anyone. We stopped at the bathroom to freshen up since we traveled all night. We then went to find our way to where we thought the greeter maybe. We asked a couple different people working at the airport and they had no clue. We went to the baggage claim and ended up at the wrong one. Eventually we ended up at the right one and found our greeter! She had been waiting for us but somehow we missed her when we got off the plane. She was asking passengers and the pilots. They all said they had seen Trevor but in the end we found her and we got our luggage and she took us to get our rental van. We stepped outside and it hit us like a ton of bricks... THE HEAT! THE HUMIDITY!! It was only 7 in the morning... It felt wonderful though! We were sweating within minutes waiting for our greeter to find out where to pick up our rental van.

Make-a-Wish Reveal Party

Here's a few of the awesome photos from Trevor's Make-a-Wish Reveal Party. More to come...

A big thank you goes out to the Make-a-Wish Foundation and Seattle's 501st Legion - Garrison Titan for making Trevor's party fabulous.

Never a dull moment...

Kara ended up getting an infection in her surgery ear so she was on another couple weeks of ear drops and no swimming. I took her back to Children's for a follow up and Allie tagged along. The girls were excited to be going back to the hospital. It is a fun place afterall! Lunch in the cafeteria, playing in the play area downstairs and best of all seeing your ear on ear TV! ( They are able to show you your childs ear on a big screen TV so you see exactly what the docs see...Pretty cool!!)

Kara's ear was not completely healed so she had another 6 weeks of keeping her ear dry... That is a tough thing for a 4 year old! The surgeon is hopeful she can get her ear wet by the time we leave on Trev's wish trip. I asked if they could look into Allie's ears too just for piece of mind for me, plus she has been hearing Kara talk about ear TV since November and she wanted to do it too! The surgeon looked into her ear and her left ear looked infected and he suspected she had the same thing as Kara... I could just cry...

I tried to be strong so I took the kids to the playroom and lunch and thought about having all 3 of my kiddos patients at Children's now. The girls had a great time painting and coloring and bubbles and then off to lunch then home to get Trev from school.

We had about a half hour before we had to pick up Trev. We decided to stop at the pet store as that is a favorite of the kids. Of course the hour long ride home the girls really had to go to the bathroom. The pet store does not have bathrooms so we went next door to the thrift store to use theirs. We were in there for only a few minutes and in that time Kara managed to fall and blood was everywhere!!!

Of course school was out in 30 minutes at this point. Once we got Kara cleaned up and settled down I had about 15 minutes before Trev needed to be picked up. I had to get Kara to the doc quickly as she was bleeding pretty good from her chin and she needed stitches. I called the school and let them know what was going on and at this point I had no idea who was going to pick up Trev or when. They were really nice about it, but I guess what else were they going to do!

After a few phone calls I finally got a hold of a friend who could pick up Trev (Did I mention that she was 9 months pregnant and today was her due date!) She was able to pick up Trev but she had a doctor appointment and dragged Trev to it.

Meanwhile, Kara was a real trooper throughout everything. Allie was great too! It was hard seeing her sister like this! Kara is the proud owner of 5 stitches on her chin! She is loving the idea of having stitches... Silly girl :)

Just when things had calmed down a bit the kids had to shake it up a bit :)

The results are in...

Trev's stress test came back excellent as well as his CPAP. Yay!! He has great exercise tolerance!! His MRI came back showing his right ventricle has enlarged but we knew that already. There is good blood flow from his heart to his lungs without the pulmonary valve so we can wait on surgery at least another couple years as long as nothing changes! It has been a LONG 3 weeks waiting for results! We go back in for a regular cardiology checkup in a few months and hopefully it will be a "routine" one instead all these crazy appointments he had this last time!

Now to keep him active in swimming and soccer to keep his heart nice and strong. Praying he can make it until 12 or 13 before he needs anymore intervention. We are SO excited that everything turned out well! Thanks for the prayers everyone!

MRI

Trev had his cardiac MRI today. He needed to be under general anesthesia because the test is 90 minutes long and he has to be completely still. They did the dye contrast to check the function of his heart. Depending on the outcome of this test he may have open heart surgery this year.

We got an early start and left at 9:30am. Good thing we left so early... There was no parking!! We finally found a spot to park and it was a compact spot of course... I had the truck which is not so compact :) After about 15 minutes I finally got the truck to fit in that small space! We got checked in and had about 15 minutes before our appt. About 12:30 Trev was finally prepped and ready to go to sleep in a big machine! He was pretty excited about the whole thing... He has been telling his friends for days all about it :)

I got to go back and watch as he fell asleep to root beer flavored gas. I have never watched him fall asleep before as cardiac kids can not have their parents in the OR with them. It was hard to watch him.

After 90 minutes he was wheeled back to the room and was sleeping soundly. It took him about 30 minutes to stir. Another 30-40 minutes to wake up. He was really funny waking up :) He tried eating his popsicle and kept missing... He was a happy camper though as he got popsicles, juice and pop in recovery.

After he got his wheelchair we went to the playroom and he played XBox for about 20 minutes then we headed to the cafeteria and he got something to eat. We had another fun day at Childrens. It was about 5:30 when we got home. Next time he misses school though hopefully it will be something a little more enjoyable :)

Again he was a ROCK STAR!!

Stress Test

Trev went in for his stress test last week. He was a ROCK STAR!!! We started the day early and picked up Grandpa on the way. Trev ate a light breakfast and snack so he would be ready for his big test! This was a first so we did not know what to expect. Overall it went pretty smoothly.

When we got to Children's we headed for cardiology and were ready to go. Trev was measured and weighed. As soon as he was measured they said we might have a problem. He was 1.5" shorter than needed to be on the bike. The nurse decided to have him sit on the bike to see if his legs were long enough. Luckily the boy has long legs!!

He had the EKG leads put on then went to the room for the stress test. He did some breathing exercises to get some base line tests. He then got on the bike with his EKG leads, mask, head band and blood pressure cuff. He was a trooper throughout the whole thing!

He ended up making it 7 minutes on the bike with a lot of resistance. Great Job Trevor!!

When I grow up....

If you asked this question a few months ago the answer was: A builder: Trevor, a doctor who works on Trevor's heart: Kara and a teacher: Allie.

Well A LOT has changed in those past few months. Trev still wants to build everything from houses and hospitals and schools and the tallest building in the world. The girls however have different plans.

The girls have been obsessed with Ariel lately. So that is where their new dream has grown. I was informed when they grow up they are turning into Ariel and Daddy will turn into Prince Eric and they are going to marry Prince Eric! Oh yeah, first I need to dye their hair red so they can turn into Ariel. I wonder what they will want to be next week!?!