Saturday, February 28, 2015

Wish Trip Part 6

Our wish trip continued on Friday with our favorite park: Magic Kingdom. This was the only day we skipped breakfast at the village to eat fast food to arrive at the park early. We wanted to be there when it opened and we were! Jaycee was in character heaven again meeting Cinderella, Elsa, Anna, and some other friends.

The new mine train ride was our family favorite. We rode it once and the attendant must have heard us talking about how we'd get back in line to ride it again because as soon as we got off, she showed us back to the front of the line immediately. Wow!

We decided to splurge on lunch. We reserved a character lunch at the Crystal Palace. Pooh and his friends made their way around to our table while we ate off the buffet. We had to wait quite awhile to see Tigger, which is Jaycee's favorite. It seemed like he was with his 30 seconds and then was off to the next table. Maybe it was longer than 30 seconds, but Jaycee felt ripped off. She cried when he walked away. I'll put a happy picture instead:
The Magic Kingdom is my favorite Disney park. There are so many fun rides and ways to see characters. Jaycee loves it too! We ended up staying there until 7 pm.
We arrived home too late to eat dinner at the village but their pizza delivery was available. So we ordered some pizzas to eat in the village as we ran through some of Jaycee's medicines. This was our last night at the village, so I had to take Jaycee swimming one more time even if it was a cool night. We were the only 2 people in the heated pool that night. We swam for about 45 minutes when the pool closed then we shivered all the way to the villa. While we swam, the boys went to the ice cream parlor.
The next morning (Saturday) was our final few hours at the village. We awoke early to pack up and check out. We were sad to be leaving such a wonderful, happy place but grateful for the time that we did have. The horses were back at the village, so of course we had to do the horse rides again. Jaycee still loved them.

Then it was time for us to go to the Castle of Miracles and find Jaycee's star. Every child that has been to the village has a star in the Castle. So yes, there are thousands of stars. Earlier in the week, Jaycee was given a gold star that she doodled on and then sent to the "star fairy" The fairy took the star and placed it in the castle and then gave us the location of our star. The volunteer showed us where Jaycee's star was located.

It was too high above to see, but the workers had pictures of her star and pointed it out for us. It was an incredible thing to know that Jaycee has left her mark on the village forever. We said our good-byes to the village and headed off to Sea World.
At Sea World, we were given front of the line access again at rides, special seating at the shows, and a free wheelchair rental. Jaycee loved the dolphin and killer whale shows. We were excited to attend Jack Hannah's animal show but Jaycee was not. This was a dark theater, so she immediately sunk to the floor until she felt safe enough to sit in her seat.The Sea World staff were kind and accommodating to us. The other people though.... Ugh!
Having a child in a wheelchair requires patience. The animal exhibits were next to impossible to get Jaycee up close to the front for her to see due to the crowds. I think everyone is focused on their view of the animals and getting their money's worth, that they didn't see that Jaycee in her wheelchair was blocked and couldn't get to the front. Either that, or the people didn't care. After being in parks all week and everyone wearing down, we didn't have the energy to fight the crowds for a glimpse of an animal. Maybe some other time....But she did love the shows!
We gave up on Sea World without seeing half of it. Leaving Sea World, we drove to Cape Canaveral and checked into the hotel we'd be staying at for the next few nights. We took the advice of other people on-line and added 3 nights on to our trip at our expense to decompress and relax before flying home.
Stay tuned....... only 1 more post to go & this wish trip series is over!!!!
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Friday, February 27, 2015

Wish Trip Part 5

The wish story continues picking up on Thursday. The Disney characters were back at the village. Today, Belle was the one Jaycee wanted to see. She loves Belle!

Rain, wind, and cool temperatures dampened our original plans today. So we looked for an indoor activity. We decided to go to the Kennedy Space Center at Cape Canaveral. It was at least an hour drive from the village with several tolls along the way. The kids loved the outdoor rockets and exhibits, which we did first before the rain hit. The kids did not appreciate the IMAX movie. Jaycee didn't even wear her 3D glasses, so I'm sure it was all a blur for her. The bus tour was neat. There were many movies here that didn't capture the kids attention at all. We left without seeing much of the center because the weather was just awful and the kids were done. We were glad to have gone, but it was more of an adult place.

We arrived home in time for dinner and to see what gifts were in the villa for the kids. Thursday night was Christmas at the village. There were Santa hats for the kids, Christmas trees to decorate, hot chocolate, and of course...Santa! As you can see, Jaycee debuted her new princess dress tonight.

After meeting Santa, we were escorted in a room with several shelves of really nice toys. Each child was allowed to choose one toy that they wanted. Elijah picked a transformers toy. Jaycee kept picking up toys she already has at home, as usual. But I finally got her talked into a Doc McStuffins play-doh set. Apparently, Hasbro, Inc. donates the toys used for Santa as well as other gifts we received. These were nice gifts too, not just toys that don't sell. There's so many companies that donate their goods to make this place special.

We went to bed with Christmas songs in our head or at least I did.
To be continued.....
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Tuesday, February 24, 2015

Wish Trip Part 4

Continuing our story of Jaycee's wish trip....

It is now Wednesday and our plan for today was to end up at Epcot for fireworks. So we spent the morning at the village to try to take it easy. First up, the horses at the village! Jaycee had a few pony rides when she was younger, but none recently. So it was exciting to see her so interested in the horse rides. She loved them! When Jaycee's turn was over, she got off the horse and signed "my turn, horse." She even tried to say horse for the first time ever. It sounded like "ss" but it was something. Needless to say, she got a few extra horse rides.

Then we decided to try the village putt-putt golf. The kids have never done this before so we knew this would end up being a little wild! And it was! The mini golf course was first class with neat surprises. Jaycee hit any ball she found whether it was hers or not. Elijah kept using his club backwards. Jaycee got tired of hitting her ball and ended up throwing it in the hole. I laughed and laughed at the kids but my husband and I aren't planning any putt-putt golf adventures any time soon.

It's was 10:30 in the morning by then, so of course it was ice cream time!! Why not? Rules don't apply at the village. With full bellies (again), we headed to Downtown Disney. After we finally figured out the parking due to the construction, Elijah hit the Lego store with dad. Jaycee and I went in search of a princess dress nearby. Success!

Epcot was next! We did a few rides before getting in line for all the princesses. Belle, Sleeping Beauty, Jasmine, and Snow White were all there. Elijah was bored, the poor kid! But, Jaycee was happy.
Later that day, we visited with Mickey, Goofy, and Minnie. I decided to get in a picture with Jaycee and Minnie. Jaycee cried and got so mad. She didn't want me in the picture. Here's that magical moment:
We loved several rides at Epcot. We successfully stayed around for the Illuminations fireworks show. Staying out late is not my idea of fun, but Jason wanted to see it. It was neat. I'm glad we stayed. I'm always thinking about the medicine we have to do when we get back, but I tried to not let the medicine and vest treatments dictate the schedule. It was a late night, but it was good.
More wish trip coming next time............

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Sunday, February 22, 2015

Wish Trip Part 3

We woke up on Tuesday morning extremely excited as this was Jaycee's day to meet Barney the dinosaur. First, we had to meet the Nickelodeon characters at the village. It was a treat for Jaycee to meet Dora.

Then on to Universal Studios for the day! We tried to cram all of Universal in to 1 day. (We aren't Harry Potter fans so that did cut some things out.) We loved Universal! Jaycee loved the Transformers ride and the Spiderman ride. Elijah.....he liked shopping. Those rides were a little much for him.

Then Jaycee's moment came...Jaycee watched Barney's show in his theatre. She lit up when she saw Barney on stage.

Jaycee loves Barney. She watches him EVERYDAY! This was such a special time for her!! After the show when all the children were gone, Jaycee had her special time with Barney. She hugged him, danced with him, and took many pictures. Barney spent more time than I expected with Jaycee. This is when I wish she could talk. I wonder what she was thinking when she saw him.
After the Barney visit, we spent the next several hours taking in Universal. The characters here went out of their way to greet us and find Jaycee. They were amazing! They spent time talking to the kids. The people were nice too. One fellow park-goer handed Jaycee a stuffed animal that he was holding since he knew she was a wish child. That was neat! We met lots of characters at Universal but I'll just post one picture of that. How about the Grinch?

We arrived back at the village for a busy night. After dinner and a few spins on the carousal, we went to Mayor Clayton's birthday party. The Mayor of the village is a rabbit and he has a wife too! Jaycee loved the dancing at the party as well as all the games. The kids made birthday cards for the Mayor. At the party, he opened each card and got a photo with every child. Here he is opening Jaycee's card.

During the party, we split up to do some other things going on. The boys went fishing at the pond. It was too cold to catch anything though. The girls hit the salon. Jaycee was able to get her fingernails painted. She chose green, her favorite color. Jaycee loved getting her nails painted! It's funny because it's a struggle when I do it at home.

We headed to our villa to get the kids ready for bed. But, there was one more surprise in store for the kids! The Mayor came to tuck the kids into bed. You can schedule 1 tuck in while you are staying at the village. The kids loved it. Jaycee started jumping on her bed like a rabbit. Then Elijah started imitating her. The Mayor had to calm them down. It was so sweet! A great end to a great day!


More about Give Kids the World: When we were in the decision mode, I debated on whether or not GKTW would be a good place for us. I have never really been at a place surrounded by other children with major health conditions other than the hospital. I read great reviews about the place, but I was still wondering if it was really going to be a happy place. Yes, it was! It was beyond happy. The volunteers are happy, the staff are happy, and the other families are all happy. It was kind of amazing to see so many happy people in one place.

The other thing that was good about GKTW is that Jaycee didn't stick out. She used a wheelchair because long walks are hard on her. People here instinctly knew to open doors for us if they saw us coming. Everything was accessible (even the pool). Jaycee wasn't the only child there using a wheelchair. If I gave her a syringe of medicine, no one stared. We fit in here!

I asked Elijah, "Isn't the village nice? And there are other children there in wheelchairs just like your sister uses."  I said this to acknowledge that other children were like his sister.

His response: "There were? I didn't notice." He's one of a kind!
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Saturday, February 21, 2015

Wish Trip Part 2

Our first full day in Florida for our Make-A-Wish trip was busy. We knew this was a once in a lifetime experience so we were determined to do as much as possible since Jaycee was in good health at the time. We visited the characters from Disney at the village first thing. That day it was Mickey, Goofy, and Pluto. Jaycee was in heaven already. After breakfast, we drove to the Animal Kingdom. We have been to the Disney parks before, so we had a good idea of what we wanted to do and not do again. There is no way you could ever see all the Disney parks in just 3 days, so we were glad this was our second Disney experience.

Being with Make-A-Wish gave us a pass at all the parks to be given access to the front of almost any ride and character line. Depending on the ride or the park, sometimes we entered through the exit, the disability wheelchair entry, or the fast pass line. This saved time everywhere!! It was the best part of the trip, skipping all those long lines. We also wore our Make-A-Wish shirts or buttons and the pink Give Kids the World button so we were easily identified by park staff. Jaycee was supposed to be the one wearing her pink button to identify her as the wish child, but she hated having something pinned to her shirt. She kept taking it off, so I wore it. Elijah was given a special Lightning McQueen ribbon by the village. He called it his special ribbon, and he was pleased to wear it everyday.

We enjoyed the Animal Kingdom until lunch when the rain started. We darted into the Rainforest CafĂ© to stay dry. Jaycee's meal and drink were free since she was the wish child. That was a nice surprise!

After lunch, the rain stopped and we headed to Hollywood Studios. There are so many great rides and shows here that we had never done before. The wish pass allowed Jaycee to sit in the front row in most shows. After the Frozen show, Jaycee was asked to stay around and meet all the characters. It was amazing. She loved it! They were genuinely sweet and caring to Jaycee. It was an unbelievable moment!

When we were walking through Hollywood Studios, one the green army men (from Toy Story) spotted my shirt. He literally waved us down and gestured to follow him. I didn't know what we were doing but we followed. We were soon surrounded by 2 more army men who danced with Jaycee and acted silly. Again, didn't know what we were doing since the army men didn't talk.
Then we were taken to a room to meet Buzz and Woody. The picture we got was awesome!! Jaycee felt so special and so did we!
We finished up our day there and headed back to the village. It was Halloween that night, which we don't celebrate. Still, there was plenty to do with the rides and ice cream. There was a volunteer with his big telescope that the children were able to look through. There were neat surprises like that all over the village all week. And of course, there were gifts for the kids waiting for us in the room when we got home.
On this day, we started paying attention to the volunteers that serve in the village. They come from all over the country and some were outside the country. It was neat to see so many people joining together to make this place run. There are volunteers that help run the rides and volunteers that carry your meal trays for you. They make the place special. What can I say? -Give Kids the World is neat!
We went to bed that night completely exhausted from all the walking and activities but ready for the next day! 
To be continued.....

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Wednesday, February 18, 2015

Wish Trip Part 1

The day finally arrived for our Make-A-Wish trip!!! The local Make-A-Wish Illinois volunteers provided us with shirts, a debit card for expenses, an informational packet, and other goodies. Because we live 2 hours from the airport and had to fly out early in the morning, we were put in a Drury Hotel closer to the airport to make things easier. We were all so excited about starting this special trip. Jaycee couldn't sleep. She was up past 11 pm, which never happens. So, 5 am came very early! We had to get Jaycee up that early because her nebulizer treatments, vest therapy, and medicines take 50 minutes to complete. At 6:30 the limo arrived to take us to the airport. It was dark and rainy so we didn't capture the limo pick up with a photo.

Off to the airport we went. I was the only one with flying experience and that was for one trip over 10 years ago. So, we had no idea what we were doing at the airport and it showed! Fortunately, it wasn't too crowded so the people were patient with us. Of course, Jaycee's vest therapy machine, nebulizer, and bi-pap machine were all flagged by security for an additional screening. Jaycee's liquid medication was also flagged, but we had anticipated this.

Like any new experience, we had spent time talking to the kids about what a plane ride would be like and how they should behave. They were prepared. We boarded the plane with two happy kids. The ride went smooth. They loved being on an airplane.

We arrived at the Orlando International airport and looked for the greeters from Give Kids the World. They were easy to spot and they guided us through picking up our bags, getting our rental car, and navigating to the village. We would have been lost without them!
We made our way to the Give Kids the World village, which was about a 40 minute drive. I had read up on the place, so I prepared. But, it was so much more amazing than words can describe. From the moment we arrived, we were greeted with happy, smiling people who seemed to love being there. We got checked in and introduced to our village. Wow! It was amazing! The kids had their own bedroom and bathroom. There was also WIFI, a kitchen, a living room, and a washer/dryer. Snacks were waiting for us as well as gifts for the kids.
I went to orientation that day. Orientation is the only requirement this place has. There you learn about the week's activities, the village, and get your theme park tickets. You automatically get a 3 day hopper pass to Disney, 2 days at Universal Studios, and 1 day to Sea World. There were many other options of possible places to go if those weren't appealing. We were provided with a meal card that gave us access to have all 3 meals at the village for free. We could also eat ice cream free anytime the ice cream shop was open. Drinks were free. Everything was free. (While I'm giving some details, I'm not going to give too much away since I don't want to spoil all the magic for future families.)
We took the rest of the afternoon and evening to explore the village. There were a few rides to ride. The carousel was our favorite. We checked out the arcade, watched an amazing model train display, and drove some toy water boats. (Everything was free!) We made special pillows in the castle, got ice cream, and swam in their heated pool. Jaycee loves to swim, so this was her favorite!
We enjoyed lunch and dinner at the village. We never had a bad meal; it was all so yummy! We later learned that Perkins restaurant and Boston Market supplied the food we were eating. No wonder it was so good!
That night we planned out the week based on what was happening at the village and what we wanted to squeeze in. Tough decisions!  To be continued.....
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Tuesday, February 17, 2015

Making a Wish

It started in the ICU. It was Jaycee's fifth time in the ICU for an illness. She was very sick, requiring a bi-pap machine to help her breathe continuously for days. Fortunately, it didn't get to the point of needing a ventilator, but she was close.

The social worker paid us a visit and recognized our family from previous admissions. She talked to us about seeing if Jaycee was eligible for Make-A-Wish. This wasn't the first time someone had mentioned this to our family, but this was the first time I actually gave it some thought. I guess after some major health crises within the span of a year it didn't seem right to wait to see if she was eligible. I decided I should pursue it for Jaycee while Jaycee could enjoy it.

I made the call to Make-A-Wish Illinois a few weeks after we got out of the hospital. There are some diagnoses that automatically make you eligible to receive a wish but Jaycee didn't have one of those. So instead, I had to give them a list of her conditions, medications, and doctors who had to be contacted to determine if she did have life threatening conditions. I hung up the phone and cried.

I wanted Jaycee to get a wish if she was eligible but her being eligible meant that her conditions are serious. It felt too real when I made this call. Sure, Jaycee has had two open heart surgeries, three heart caths, three other minor surgeries, and has been admitted to the hospital multiple times. She takes several daily medications, twice daily vest therapy for a lung cyst, and sleeps with a bi-pap for obstructive sleep apnea. In the past year, Jaycee has started to require special precautions for some type of staph infection on her skin, which has required weekly bleach baths to help control it. Her reflux disease has gotten so bad that we have taken additional steps like elevating her bed, limiting certain foods in her diet, and trying to eat the evening meal early. Still it seemed like I was admitting just how bad things have gotten over the past few years when I made this call.

I believe it took a few weeks to hear back that Jaycee was eligible for a wish. I was excited for her to have this opportunity. When the organization says you can wish for anything, they mean it. Nothing was off limits that they wouldn't at least look into. But, the child's doctor does have the final say if it is safe for the child or not. Staying in the continental United States was important to me for Jaycee's health and breathing.

I spent hours and hours googling and searching for things that Jaycee might be interested in. Her main interests are movies, tv, and the characters that go with them. So after much searching, it was decided to just do what many other wish families do: Disney. Disney Florida or Disney California became the decision. My husband and I just couldn't decide. So, we let our minimally verbal child decide.

I made these two pages and explained to Jaycee the differences in the trip in words she could understand. Then I asked, "Where do you want to go?"  We asked her about 10 times over a couple of days and she pointed to the page to respond. The winner was Florida by a landslide. So, our wish became to meet Barney the dinosaur (at Universal Studios) and stay at Give Kids the World, which is a special village for families specifically on wish trips. This also would give her the opportunity to go to the Disney parks and Sea World. Our doctor recommended that we go in the off season to avoid some germs, so February was our month to go!
I'll be sharing details about our wish over the next few posts, so come back if you want the rest of this story.

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Wednesday, February 11, 2015

Public Interactions with my Minimally Verbal Child

Jaycee says less than 20 words due to severe childhood apraxia of speech (CAS) and her low muscle tone associated with Down syndrome. She has a small amount of consonant sounds she can produce and can usually only put very simple word forms together. For example: mama, dada, oh for no, hot, bubba, papa, "ss" for please, etc. She's trying more words than ever before but it is extremely hard for her to produce all consonant sounds and to sequence those sounds into words.

Interacting with the public when you can barely speak is tricky. These are common experiences I have with Jaycee while we are in public.

1. When a stranger asks Jaycee a question and she doesn't respond (because she can't), they ask me if she's shy. Sometimes I say yes and walk away. Other times I explain why she can't answer.

2. When Jaycee doesn't respond to a question asked by someone unfamiliar with her, they will make a comment like, "Aren't you going to talk to me?"  No, she can't talk to anyone. She only says a few words!

3. When people ask her what her name is, I usually have to answer for her. She does have a communication device but doesn't usually tell people her name with it.

4. When people see her signing, they ask me if she's deaf. No. Why can't she speak if she can hear? My answer will vary in length depending on who is asking and how interested they really seem to be on this subject.

5. When Jaycee does say a familiar word, people act as if they have witnessed a miracle and make a big deal out of a word I have heard her say a thousand times.

6. Children who approach her on a playground may say things like, "She can't even talk!" Some will ask me, "Can she talk?" She can say a few words but her mouth just doesn't work like yours. She uses sign language and can communicate other ways though. Then I usually teach them a sign or interpret Jaycee's gestures for them.

7. At restaurants, I generally have to order for Jaycee. We do try to have her use her communication device when the food is on her device and if she will cooperate. Sometimes, she'll order pizza at a fast food hamburger joint, so that's when I have to jump in.

This is just a few encounters for you to get an idea of what it's like for Jaycee and I when we go out and about. If you are a teacher or a professional, then I hope this helps you understand what some of your families deal with regularly.

Jaycee signing "deer," her name for her cousin Gabby. Signing is one of the many ways she communicates daily.

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Wednesday, February 4, 2015

My Attitude Adjustment

A few years ago, I had one word to sum up how I felt being Jaycee's caregiver.   That word was: WORK!

It was a hard time for me as I struggled to find balance between everything I had to do to care for Jaycee. Just going out in public with her took so much concentration and thought. One second of letting go of her hand to pull the car keys out of my pocket would result in her running off.

Then there was the bed wetting due to her sleep apnea. She went through a long span where her night diaper wasn't holding everything. She would wet the bed sheets nearly every night. I would walk in her room in the morning and be so upset if I had to wash her sheets, dry her mattress, and clean her up. I don't know why I had such a bad reaction- maybe because I'm not a morning person. It just started my day off wrong.

There were other challenges too like keeping up with her therapies and medicines but those were the two main issues.

I was struggling at this time. I felt overworked.

One Sunday, I went forward for prayer for Jaycee's running off. I asked for wisdom to know how to handle her and for her to understand the dangers I was trying to teach her. The guy prayed with me for awhile and then he asked if I dealt with fear and panic while taking Jaycee out. The answer was yes, especially when I was chasing her through a busy parking lot. Then he started praying for me and encouraging me to fight off those feelings.

The prayer was great. When I had time to think though, I told God: "I know that I shouldn't be fearful but this would be pretty simple if Jaycee would just listen to me and not run off!!!" In other words, if Jaycee could just change in some areas, I wouldn't be as stressed and tired and fearful.

But, it seemed that God would only address me and my reactions instead of performing a "miracle" with Jaycee and the problem areas. I kept muddling through. Trying to unsuccessfully to maintain a good attitude.

Then one Sunday, there was another opportunity at church to learn and grow. I don't remember the message specifically but I do remember what God spoke to me during it. Basically, I realized that my problems weren't Jaycee's behaviors....My problems were ME!!

It was my attitude that stunk. It was my reactions to the situations that were awful. And I had never really thought about the bed wetting from Jaycee's perspective. I'm sure she didn't enjoy it either.

I started working on myself, my reactions, my emotions, and my thoughts. I tried to keep them in check. I stopped being "let down" that she still wasn't doing what I wanted her to be able to do. I just tried to accept things as they were for now and work on myself.

Over time (not instantly), my attitude changed. I didn't see my role as her mother as work. It changed. I started doing things out of love again and didn't feel so burnt out. And I was grateful for that.

Philippians 2:3-4  Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves, do not merely look out for your own personal interests, but also for the interests of others.  NASB

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