The Disney Wish Trip Photo Album

I finally got around to organizing all of the photos from the trip that are worth sharing and uploading them to the web. So here they are all in one place. Click the photo below to get to the entire photo album.

Disney Wish Trip

Day 7: The Return Home

Our final day on our wish trip to Florida was spent shopping for souvenirs and traveling. We had a final breakfast in the village, spent some time just relaxing and enjoying the Florida weather, and then packed our bags for the airport. At 11am, we checked out of the Give Kids the World village, and hopped over to Downtown Disney for some souvenir shopping. Josh quickly spotted a Lego store and both Josh and Katie browsed every section of the store and came out with enough Legos to keep them busy for the next several days. Lego and souvenir shopping complete, we grabbed a quick lunch and then headed for the airport. Shortly after 9pm we arrived back in Burlington Vermont right at the tail end of a snow storm. There were 6 to 8 new inches of soft, powdery snow waiting to welcome us home. A limo was waiting to transport us home from the airport, a 2-hour trip in good weather. The trip took about 3 hours this time and all four of us ended up falling asleep during the ride. Our Disney vacation had tired us all out.

Even with a good night's sleep behind us, we are all still moving slowly today. The kids have both been assembling their Lego creations and watching movies. We need a couple more days of rest. With school starting up again on Wednesday, life will resume its normal pace soon enough.

Day 6: Universal Studios, Magic Kingdom & GKTW

This was another long day and the kids are both tired. We started off with Universal Studios, and spent several hours exploring the park. There wasn't enough there to hold our attention for the whole day, so we eventually headed back over to the Magic Kingdom. Since this was our second trip to the Magic Kingdom, we focused our attention on the two rides that we wanted most - The Thunder Mountain Railroad and Splash Mountain. In just 3 hours, we managed to ride Thunder Mountain 3 times and Splash Mountain twice. Then we left Disney World and came back to Give Kids the World in time for their weekly Christmas celebration. Christmas at Give Kids the World was quite fun. The kids got to meet Santa and have their picture taken with him. They were given Christmas presents. They had a sleigh ride. They saw a parade and participated in a dance party with other kids and all of the Give Kids the World characters as bubble snow fell to the ground around them. When everything was finished, we took the kids out for dinner and they barely made it throuh dinner awake. When we got them back to the villa, they collapsed into their beds without argument and passed out for the night. This was our last big day of park hopping. Tomorrow, we check out of the village, do a little shopping and then we are headed for home. Our wish trip is almost over.

Day 5: GKTW, Sea World & Medieval Times

We are on our way back to Universal Studios so I don't have time to post much right now. However, below is a video montage of everything that we did and saw yesterday at Give Kids The World, Sea World, and Medieval Times. Medieval Times turned out to be the real highlight of the day with Josh being knighted in a ceremony with the king and Katie winning the red knight's favor after he won a tournament. We are having the time of our lives.

Day 4: Universal Studio's Islands of Adventure

Today was another big day. We spent the whole day at the Islands of Adventure in Universal Studios. It is another huge park, similar to Magic Kingdom in that there are rides and attractions everywhere. We spent much of the morning in the Dr. Seuss themed park, had a huge lunch at Bubba Gump's and then headed into the Harry Potter and Jurassic Parks. The Harry potter park was amazing and the rides (3) were terrific. Katie found another roller coaster that she absolutely loved, called "The Flight of the Hippogryph". We rode that 6 times. Josh and I also discovered the Harry Potter simulation ride where you fly over, around, and through the Hogwarts school on a broom. This was the one ride that has come the closest to making me sick. It was also so realistic that Josh was afraid to go on it again. But WOW! What an experience. 

We finished the day by getting absolutely soaked on a couple of different water rides and then heading back to our villa for some pizza. Tomorrow, we head to Sea World!

Day 3: Animal Kingdom

Today started out slowly. After dragging the kids and ourselves out of bed this morning. We spent some time at Give Kids The World getting a good breakfast and having some photos taken with Mickey, Minnie, Goofy, and Mary Poppins. I spent some time updating the blog while Amy and the kids rode around the village on the little train that they have here. Then, we headed over to Disney's Animal Kingdom - an extra large version of Granby Zoo but with a safari ride and live entertainment. It was a good choice for the day after Magic Kingdom because meandering slowly through the animals and taking the time to sit and watch the live shows gave us a chance to recouperate. The shows were spectacular and the animals were lively and active. However, Josh couldn't wait to get to the parks 2 major ride attractions, a tube ride down a river designed to soak every rider; and a roller coaster named Everest. The river ride soaked Katie to the bone. Luckily we brought extra clothes for just such an incident. The roller coaster was big, fast, and scary - I know from personal experience because Josh needed someone to go with him and this being a wish trip I couldn't say no. At the end of the day, we came back to Give Kids the World early enough to catch a late dinner and get the kids into bed at a reasonable hour. Tomorrow. We're off to Universal Studios! :)

Day 2: The Magic Kingdom

Yesterday we went to Magic Kingdom and we had an absolutely incredible time. What a way to start a Disney Vacation. The rides were fun, but the presentation and the amount of effort that goes into making everyone feel welcome is just incredible. Katie WAS a princess for the day and everyone went out of their way to make sure she was happy and having a good time. We spent more than 12 hours in the Magic Kingdom and still didn't see everything. Part of the reason might be because the kids fell in love with Splash Mountain (3 tiimes) and the Thunder Mountain Railroad (5 times).
Our Give Kids the World pass and our Make-a-Wish buttons granted us access to more than we coud have ever imagined. We were able to walk past lines that others would have to wait in for hours for rides, for photo ops, for everything. If a park employee caught site of our credentials, we were treated like royalty. Below is a video that shows just some of the things we did and saw at the magic Kingdom.

Day 1 in Kissimmee at Give Kids the World

There is no easy way to explain how much fun we are having. For starters, the limo ride to Burlington was very cool; for once, we were all in the backseat and not separated, so we all curled up and lounged (after the kids had tried out every last seat in the limo). Thanks to my folks for dinner and to our wish granter, Joe, for breakfast. The plane ride was a huge hit. The kids loved flying, and they were great on the plane; no one got sick, and we all behaved ourselves. (And we got to see the cockpit...) After a quick lunch at Katie's Kitchen (really--it's Boston Market, and it's really good), I went to the orientation at GKTW, where it was frankly overwhelming to realize how much there was to do and how much we had access to during our stay. Picture an enveloped FILLED with theme park tickets. It was like an informercial: "But wait:  There's more..." We played in the interactive water garden (so cool) and then played in this huge pool with several other families. That's right--We swam in a heated pool OUTSIDE in February. Fun! We had dinner at the Gingerbread House, which features real entress (pot roast!) for the adults and kid food for the kids. The kids were almost asleep at dinner, but they rallied for the carousel, which we rode again and again. Katie would have stayed on the carousel all day and happily. Last funny story: There is a party every night at GKTW. Last night's shindig was a party for Mayor Clayton, a six foot tall rabbit who tucks the kids into bed at night. There were tons of kids running around having fun, dancing and getting their faces painted. There were party hats, cotton candy, sno cones and cupcakes. The rule here, by the way, is that we can all have ice cream all day--whenever we want it, as many times as we can eat it and not get sick. Here's a hint about day two: Ice cream featured prominently in our breakfast plans. :)

On another note: Everything about GKTW is wheelchair accessible. Wheelchair bound kids can ride the carousel and the train. They can play on the pirate ship. They can use the slide at the playground. This place is nothing short of  miraculous--and it staffed primarily by volunteers, who smile all day long and who spoil the kids rotten. My cheeks hurt when I went to bed last night. I don't know when I have ever had this much fun.
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Off to Disney...

Katie Gets a Wish!

In November of this year, we contacted Make-a-Wish on Katie's behalf and they gladly granted her a wish. A couple of wish granters came to our house to speak with Katie about her wish and without a second thought, she told them exactly what she wished for. She is a happy, healthy five-year-old who believes that she is a princess so what do you think she wished for? Of course, she wish to go to Disney World!

So Make-a-Wish jumped into action and made all the arrangements and Katie is going to Disney World. She will be treated like a princess during her stay at Give Kids the World, "a 70-acre resort complete with over 140 Villa accommodations, entertainment attractions, whimsical venues, and fun specifically designed for children with special needs"(gktw.org). Just 10 miles from Disney World, Sea World, Universal Studios, and the many other attractions in Kissimmee and Orlando, Give Kids the World will be Katie's home base for 7 days while she visits theme parks and has experiences that she has only ever seen on TV and dreamed about. As an added bonus, parents and siblings are expected to tag along and have just as much fun as the wish kid!
We will post pictures, videos, and more blog entries about her wish trip soon.

Success

Katie's port surgery was a smashing success. She was in and back out of the hospital before she even knew what was happening. The idea of the surgery, of losing the port that had been with her for so long, was scary for her. She was very brave about going in to have surgery, but every now and then, she showed us that she was actually quite afraid. She would get upset and tell us that surgery was scary and that she was afraid of having her port out. However, when the doctor put the grape smelling gas mask on her, she went right to sleep without any complaints. When she woke up after the surgery, she had another moment of fear and told us that she was afraid of having her port out. She was quite shocked when we told her it was over and that her port was gone.

Her recovery has gone very well. She has showed no signs of discomfort or infection. In fact, she had some regular Tylenol at the hospital on the day of surgery and hasn't had any since. We were sent home from a prescription for Tylenol with Codeine, but we didn't have to fill it.

Today, we are headed back down to Fletcher Allen for a follow-up appointment and her end of treatment party. The doctors and nurses in the children's specialty clinic are actually going to throw a small party for Katie today to celebrate the fact that her treatment is over.

Relay for Life Fundraiser for Katie

Katie's cousin Eric organized a fund raiser for Katie and our Relay for Life team. He and his soccer team raised $300 for the Relay for Life in Katie's name. At a soccer game today near Katie's home town, the whole team wore pink arm bands to signify their support for our fight against cancer and they gave Katie a giant check for $300, one pink rose from each person on the team, and a soccer ball signed by every person on the team. It was a heart warming event and we are very happy and thankful to the team and the parents who support them. We are especially proud of Eric's efforts to organize this fund raiser and make his little cousin Katie feel so very special. Thank you.

The Last Infusion and a Farm Update

Katie had her last infusion of chemotherapy Friday. She is still taking chemotherapy drugs in pill form for another 16 days, but she will not have to go back to Fletcher Allen for any more chemo through her port. She is feeling good and her blood counts are up. With any luck, she will finish out these next 16 days strong.

Back on the farm, we added another calf, 36 more chickens and 3 turkeys. Katie's favorite farm critters right now are the chicks. She really loves them when they are young, cute, and fuzzy.

Relay for Life Coming Up Fast

We are participating in the Relay for Life again this year. The relay will take place on Saturday, June 26th this year at North Country Union High School. Katie and Josh both plan on attending and staying through the night. Last year, Katie lasted late into the night and walked lap after lap despite having had a heavy dose of chemotherapy that included intravenous Vincristine and intrathecal Methotrexate just two days before the event. This year, she will get her very last dose of chemotherapy eighteen days before the event. This will be her very first Relay for Life as a post treatment survivor.

If you want to join our team or donate to our cause, please visit http://main.acsevents.org/site/TR/RelayForLife/RFLFY10NE?team_id=664088&pg=team&fr_id=23452

An Over Due Update

Katie has fully recovered from her sprained ankle. Once again she is actively running and playing. During her recovery she was still able to have some fun. She celebrated Easter with not one, but two outdoor easter egg hunts. One with her friends and immediate family and the other with her extended family. Although she was a little sore at the end of the day, she was happy. Since that day, she hasn't favored that leg again.

She did, unfortunately, run into a little trouble with thrush again. This time, I'm sure that it was caused by her inhaler. We were issued the inhaler with specific instructions to rinse thoroughly after every use because the steroid in the inhaler could encourage the growth of thrush in her mouth. One morning, in our rush to get to school on time, I helped her use the inhaler and then we forgot all about rinsing. The next morning she had a white growth forming on the tip of her tongue. Luckily we still had some medication left over from the previous case of thrush so we started having her rinse and spit the medication twice a day immediately. The thrush never got any worse and two days later it was gone. We caught it quick.

This past week Katie has been dealing with a case of the croup again. It was keeping her up at night and she was coughing so much that she was having trouble taking a breath. However, we managed to get it under control by putting two humidifiers into her small room, rubbing her chest with Vics Vapor Rub and closing the door as she slept. In the morning, the inside of her windows were covered with condensation, but she slept well and that is all that matters. We continued to use both humidifiers until last night when her coughing seemed to be under control. She slept with just one humidifier running and the Vics last night and she still slept fine. She might be getting over this round of croup.

Things have happened on our farm since the last time we updated the blog too. One of our pigs, Charlotte, had finally grown big enough for the slaughter house and was sent to the butcher. The kids said their tearful goodbyes as we loaded her up, but they were smiling again shortly after when it was time to feed the newest addition to the farm. We acquired a new calf. He is a Jersey/Holstein mix and we named him Mocha. He is only three weeks old and has to be bottle fed by hand. Katie thinks he is absolutely adorable.

Back on Her Feet

Katie is back on her feet and walking around on her sprained ankle. She is limping a little bit, and doesn't dare to run or jump yet, but she is successfully walking all day long at school. She is very proud of herself.

Healing

Katie's sprained ankle is healing slowly. The bruise, which was magnificent, is now reduced to just a purple area about 4 inches long and an inch thick along the side of her foot below her ankle. She still can't walk on it or even bear much weight on it, but she has stopped wearing the air cast and is now back to wearing her sneakers. With some prompting, Katie can use her leg enough to balance herself on two legs although the leg with the sprained ankle is just barely touching the ground.

She surprised us all this morning by trying to and succeeding at a very short crab walk in which she successfully bore at least some of her body weight on the injured ankle. She proudly exclaimed that it didn't even hurt. Hopefully for her, the worst of this injury is behind her and things will just keep getting easier from here.

Infection Free

Katie's ear infections are officially gone. Apparently the Augmentin did what it was supposed to do and the pain that Katie was complaining about for the last couple of days before going back to the doctor for a follow-up was caused by the fluid that is still in her ears. The doctor prescribed a nasal spray to help drain Katie's Eustachian tubes and sent us on our way. To help keep the ear infections at bay, Katie is also taking 2400mg of Xylitol each day. Xylitol is a natural sugar-alcohol that comes in the form of gum, syrup, or candy and our doctor recommended giving it a try. We bought the candy from our local health food store and Katie has no problem gobbling it down. Although I just read that Xylitol needs be given in a dose of at least 8400mg to be effective. We will probably increase her special candy allowance now that she is infection free again and try to keep her that way.

School vacation starts this week, and Katie is looking forward to both down time and time for play. She took a 3 hour nap this afternoon and only woke up because I woke her up. I wasn't interested in her staying awake all night after sleeping too long in the middle of the day. Tomorrow, if the weather cooperates, the whole family is going skiing and riding at Burke Mountain. Hooray for vacation!

On The Road to Recovery

Katie hasn't had any follow-up appointments since her last visit to the hospital, but things appear to be getting better. She is no longer suffering from fevers at night, she claims that her ears are not bothering her, and the color is returning to her cheeks. We put her back in school this week, and although the first and second days back were rough with school directly followed by a nap, she finished out the week strong. She even got out to play on her snowshoes today with her other preschool pals and she appears no worse for her experience. It looks like she may be declared healthy at her follow-up visit next week.

Now, how long can we all stay healthy?

One Big Update: Good, Bad, and Ugly

It has been a long while since we added entries to the blog, but this has not been an uneventful stretch.

First there was Christmas. We wished for and received a Christmas at home. Katie's health was good, and we enjoyed ourselves tremendously. The kids had lots of energy, and they immersed themselves in parties and play. Santa spoiled us rotten, and we had time to breathe. It was glorious.

New Year's even went off without a hitch, and the kids were happy to return to school, as were we. It is hard to believe that we are halfway through the school year. Katie continues to love school. She is always happy to get up and go. She has learned her letters. She recognizes her numbers. She can recognize (and even spell!) some words. She plays school. When her Nana asked Katie about her career ambitions the other day, she explained the full plan: She will teach at Lake Region with her parents. Then she will be President. Then she will be a surgeon. (Hmmm....Oddly enough, Joshua wants to be an engineer or an art teacher. It's hard to know whether or not to encourage the teaching madness...) Whatever the final outcome, we are thrilled that Katie takes such pleasure in doing well in school and that she has made sweet, thoughtful, energetic friends. (Joshua is also thriving at St. Paul's and has friends that we truly love.)

Katie's new project involves lots of snow and some fast skis. Joshua is a very skilled skier. He is brave, and he is fast. Katie is determined to catch up. She seems far too small to be skiing--in ski pants and a parka she is as wide as she is tall--but she got right into the J bar line at Burke with her dad, and off they went, proud mama trailing behind as Joshua went flying past. After two short sessions with her dad, she ventured off bravely on her own. Now we just need to teach her to stop (and maybe turn).

Unfortunately, we will not be skiing this weekend, as together we have managed to contract half the infectious diseases known to man in the last two weeks. Katie went to North Country hospital with ugly ear infections in both ears and with a fever that spiked through Tylenol and that continued for five days, causing her to miss an entire week of school. Before she had finished the amoxicillin, I ended up with impetigo, a skin infection that is surprisingly unpleasant and really unattractive. Joshua dragged himself through the week, tired and weepy. We thought he must be having another growth spurt. Wrong again. The lymph nodes that stuck out past his ears brought us back to our beloved pediatrician on Tuesday, where he was tested for mono. Despite all the physical indicators of mono, the test came back negative, but he is still pooped, and his swollen glands indicate that there is some kind of an infection swamping his system; because the infection remains unidentified and he cannot make it through the day without a LONG nap, he is home from school all this week. Is he contagious? Does he pose a threat to Katie? Who knows? North Country Hospital loves us, but our health insurance must have different feelings...

Katie returned to Fletcher Allen today for a lumbar puncture and her monthly chemo. She struggled with anesthesia, coughing a lot while under and producing phlegm during the procedure, so doctors had to sedate her more deeply than usual and vacuum the mucus from her airways. Gross...We are hoping that the contagion finds another family to torment and that the cough is not a sign of bad things to come. Despite the variety of germs and viruses that are likely actively attacking her body right now, her ANC is holding at 1600. Well enough to continue to live and play like any other 4-year old. Oh, well. Snow coverage is spotty after some rain last week, so we will abandon all hope of skiing and focus on getting well.

Smooth Sailing

It seems like the whole world is getting sick right now, but not Katie and Josh. Kids in the high school where Amy and I work were getting sick left and right a little more than a week ago. Many of them had H1N1 symptoms, but our local hospital did not test them to verify the illness. Now kids in Josh and Katie's school are getting sick one after another. One of Josh's classmates is out of school today with a fever that approaches 104 as soon as the fever reducing medication wears off. Another classmate was out for an entire week with fevers every day.

Katie and Josh have both had their seasonal flu shot and the first H1N1 shot and we feel very fortunate that they were able to get them. Up to this point at least, those shots have done a fine job of protecting our children from the worst of the worst.