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Transplant Day 2

Emily’s blog from last night left us in the waiting room.  Around 11PM I looked up at the status board in the waiting room and all the other procedures had finished, just Patrick on the board in OR 3.  About 11:45 we got a call saying that they were done and the surgeon would meet us in the PICU lounge.  So we packed our stuff and headed back to the PICU.

We got to the PICU lounge and watched a kid try to climb the walls.  We were pretty sure he had family on the floor, and he wasn’t allowed to be in the room, so he was stuck in the waiting room.  I then realized that he probably didn’t get to participate in any of the Halloween fun that had been happening outside the hospital that night.  I couldn’t get to unhappy with him for trying to entertain himself.

Dr. Grant came and sat down with us.  She said everything went well.  He was able to keep his G-Tube, and his belly button.  G-Tubes are often removed because they remove parts of the stomach to try to make food pass better.  And belly buttons are often in the way of the incision, however usually if you tell the surgeon that the belly button is original and it wasn’t created by some other surgeon, they do their best to keep it around.  She mentioned that she removed his spleen and gallbladder partially to make room for the new organs, and partially because they have potential to cause problems down the road.

Dr. Grant was able to completely close his incision.  She mentioned that the likelihood that they will have to go back in and clean things out is about 50% so she only stapled him closed.

We both looked at each other and knew that we were all dead tired, so we agreed that we would chat more in the morning.

We then watched them wheel Patrick by with multiple people from the team surrounding him.  They had told us that we needed to wait before we could come back, but no one really told us how long.  There is a lot to get done when any patient comes out of surgery, not to mention one like this, so they prefer not to have parents around getting in the way and asking questions for a bit, which to us is completely understandable.  Some told us to wait an hour, some said that they would call us when they were ready (that never happens).  So we sat there, half awake.  Finally I decided that I would go ask the receptionist to call back and see if we could go back and kiss him goodnight and head back to our room to get some sleep.  They agreed.  When we got back to his room we were greeted by the main PICU doc with many questions.  Guess we didn’t need to wait that long.

We answered the docs questions, and said hi to the team that would be taking care of him that night.  They mentioned that they would be trying to extubate him in a few hours which caught us off guard.  We asked that they call us if they did, they agreed.  We wandered back to our room which is about a 5 minute walk back.

We both got ready for bed quickly, and were asleep as fast as we could.

We slept pretty well.  We got notification of a voicemail on our home phone, so we listened to it, and it was the nurse asking us to call because she had a few questions.  So we got ready for the day and headed up to his room.

Patrick was still pretty out of it.  He would open his eyes just a little bit look around, and fall asleep.  Which is what he did most of the day.

In the early evening we were doing what we could to try to get him to fully wake up and open his eyes.  I had walked to a grocery store and among the things I picked up was chap stick.  Understand that Patrick obsesses over chapstick, when he has some it is like his little friend, he has to have it everywhere.  We offered him a stick of chapstick, and he immediately wanted it, wouldn’t open his eyes but wanted to hold it.  His hands weren’t really coordinated enough to hold the chapstick though.  He fiddled with the chapstick for a bit, and we asked him if he wanted to put some on Emily’s lips.  He nodded, so Emily put the chapstick in his hand and bent down so he could reach her lips.  The nurse was out of the room when this happened.  As the nurse came back in the room, I heard another nurse comment to her “He is putting chapstick on his mom, I think he is awake enough to come off the vent”.  So the nurse went and got the doc, who gave the go ahead.

They turned off the vent and took the breathing tube out (extubated) him.  He started to try to talk, and had a croaky little voice, but at least we could attempt to communicate with him.

They put him on oxygen using a nasal cannula.  He doesn’t like things in his nose, so he made every attempt to pull out the cannula.

Because he was off the vent, we could ask to hold him.  The nurse happily agreed, and we started getting things ready so Emily could hold him.  This was a bit of a process, with IV lines, monitors and other tubes attached it takes a bit to move him.  But we did fairly easily.  He is much bigger since the last time Emily held him in the PICU.  But they were both happy to be in the situation.

The rest of the evening was spent with Emily hold Patrick trying to keep his hands away from the oxygen cannula.  I did what I could to keep them both comfortable.  Patrick got a little more voice back, but it is still not what it should be, but that will come with time.  He is still quite out of it.  He hasn’t had any pain meds or sedation since this morning, but he is not really complaining about pain.  He is a great little trooper.

As I finish this blog Emily is already asleep.  It is amazing how tired we are.

Thanks again for all the thoughts and prayers.  Tomorrow is the sabbath for most please join us in thanking our kind Heavenly Father for this amazing blessing, and asking a blessing of comfort on the family wherever, whoever they are for making the choice to help so many other families at such a hard time.

Sea World (Wish Trip Day 7)

Today was a busy day.  We had to be out of Give Kids The World (GKTW) by 11:00.  That meant that we had to pack up all the stuff we brought and all the stuff that was given to him.  I also needed to switch cars because our reservation for the Wish Trip ended today.

While I went to switch out cars Emily and Patrick finished packing up and then went an played on the amazing playground just down the street from our villa.

We got to the front desk to checkout at 10:55.   They presented us with more treasures.

We stopped in and had one last lunch at Katie’s Kitchen (Boston Market sponsored).  I kinda looked around with a heavy heart at all the love and service that goes into GKTW.  I expect that someday we’ll be back at GKTW.

We then headed to Sea World.  We arrived and checked out the schedules first.  We headed straight to feed the dolphins.  The goal was to catch the dolphin show right after that, when we entered the dolphin stadium it was nearly full, when we showed the GKTW badge and expected to be shown to special seats, the greeter looked at us like what do you want me to do?  I know we are spoiled.  We decided to catch some other rides, and get to the dolphin show a little earlier.

We went to ride some rides, they kept being worried about Patrick’s TPN backpack, which is attached to him.  We tried to ride the kids roller coaster and were told that he couldn’t ride because of his backpack.  We left the ride a little unhappy.

We went back across the park to catch the dolphin show.  We got the very last handicap seat available.  The show was good until they stopped the show because of lightning in the area.

We left Sea World a little unimpressed.

We headed up to my Aunt and Uncles house.  We’re going to spend the next few days here.

Here are some pics from today:

 

 

Magic Kingdom Round 2 (Wish Trip Day 6)

Today we had one last day at Disney, we talked to Patrick about what he wanted to do.  He could have gone to Animal Kingdom, or he could go back to Magic Kingdom and do what we did on Monday.  He chose Magic Kingdom, so that is where we went.

When we finished with breakfast, Patrick was already asking for a nap.  But we headed to the park.  We went directly to “Be Our Guest” which is a new Beauty and the Beast restaurant, which has reservations booked months out.  We just asked if there had been any cancellations, the cast member said no, but then her eyes caught the magic badge, and she sent us directly back.  When we got to the gate the cast member looked at us like we were crazy, so went back to the front and said we weren’t ready for dinner at 9:45 AM, she asked when we would like to come back, I said any time after 11.  She handed us a paper with 11 o’clock written on it.

We did a few of the rides Patrick loves, we also tried the Seven Dwarves roller coaster.  Patrick loves roller coasters, the Seven Dwarves was no different.

We headed back to the restaurant and got there a few minutes early.  People were milling around saying that they were 2 minutes early so they needed to wait.  I was afraid that we would be doing the same.  But we caught the cast members eye, and she told us to go in.  This was a different restaurant, you order at kiosks and they give you a “rose” (think Beauty and the Beast).  You go find a seat, and grab your drinks.  A while later the food magically appears on carts.  The food was good.

We told Patrick he could ride a few more rides, and then he needed to rest.  He happily rode a few more favorites.  We gambled that the rain would hold off enough for us to run back to our villa and get Patrick some rest.

Patrick and Emily took a nap, I started to look at email I have been ignoring all week (not much on the work side).

We woke Patrick and asked if he wanted to go ride some more rides, which of course he did.  So we headed back to the park.

We did a few more favorites, and then headed towards Big Thunder Mountain.  And of course it started raining.  We detoured to “It’s a small world” which isn’t as magical in Disney World as it is in Disneyland.  When we got off the ride, the rain had mostly stopped.  So we kept going towards Big Thunder Mountain.  For those of you who aren’t Disney followers, Big Thunder Mountain is a big people roller coaster.  Patrick has been tall enough for a bit, but we hadn’t dared take him on it, but his love for roller coasters made us think he is ready.

We go onto Big Thunder Mountain and Patrick didn’t look super excited to be there.  We got off and he asked to do it again.  We told him not quite yet, so we headed to the Seven Dwarves ride again.  When we got off that, he asked for the “big” coaster.  So we walked all the way back to Big Thunder Mountain.  This time around he giggled the rest of the ride.

We had about an hour left, so Patrick named the rides he wanted to go on, the first of which being on the far side of the park, but that is ok.

We finished off the day doing what Patrick wanted.  Which in our opinion is how it should be.

Tonight is the last night at Give Kids The World.  I’m kinda sad to see it go.  Tomorrow we will pack everything up, and go to Sea World.  We will then go and spend a few days at my Aunt and Uncles north of Orlando.  I’ll try to get another blog or two done while we are there.

Here are some pictures:

 

Epcot / Hollywood Studios (Wish Trip Day 5)

(Before I start my brain has reached mush state.  I apologize for the rambliness and or typos that will be in this blog, I mean more than normal.)

Today we had lunch reservations at an Italian restaurant in Epcot, so that kinda framed our day for us.  Patrick had yet another rough night, he doesn’t ever sleep great when away from home, but the last two nights have been short on sleep.

We got up and got ready.  My cousin was going to come and hang out with us for a while today, which meant that we needed to get out the door at the correct time.  We were running behind schedule but so was she, so it all worked out.

We got to Epcot and parked right up front and wandered into the park, it was nothing like getting into the Magic Kingdom on Monday.  We started out with the Nemo ride, when we finished we met my cousin and her two youngest kiddos.  We wandered around the aquarium a bit.  Patrick was seeking sensory input so bad that he couldn’t stand still.  So we headed for another ride.  We ended up on a ride about the five senses, and what imagination can do to them, it was a fun ride.  Patrick wasn’t so thrilled about the beginning, but once the colors got bright he liked the ride.

When we got off it was time to head to the back of Epcot and go to lunch.  We got there right on time.  We were seated.  I was amazed that all the staff I saw were Italian.  At first I wondered if their name tags just had Italian places on it because it was in the Italian portion of Epcot, but they all spoke Italian to each other.  When Emily ordered her dish, the pronounced it correctly, and that caught the waitresses attention, she asked how come she could pronounce it so well, and we admitted that we speak Italian.  She switched over to Italian, which was kinda fun.  Been a long time since I spoke about food though, I’m a bit rusty.  The food was good, I haven’t a real arancino in a long time, these were small ones, but they were good.  Patrick did ok, for the mood he was in.  The chef came out and talked to us, and made sure that Patrick’s allergies were avoided, too bad he didn’t eat any of it.

When we finished there we wandered a bit more.  Patrick was asking for rides.  We decided to give the “Test Track” ride a go.  The ride was ok, took a long time to get to the ride part.  You start out by designing a concept car, which he enjoyed.  Then you get pushed out into another line that didn’t ever seem to move.  Patrick was doing anything he could for his sensory needs, which made him very naughty.  At the end of the line were cars on a track (think Radiator Springs Racers in California Adventure), the cars go through testing, and then out onto the track which picked up speed, Patrick liked that part.

When we finished we decided that it was time to head to a different park after consulting with my cousin, we decided we would head over to Hollywood Studios.

We got there and it seemed pretty crowded.  We hopped on Midway Mania (Toy Story shootem up ride), which Patrick likes, but the lines are always long.  Our magic pass helped a bit wit that one.

When we got off it was tubes off time, so we took another break, and took off Patrick’s tubes.  My cousing pointed out that we weren’t too far from where Lightning McQueen and Mater are.  So we stopped in and met them.  Patrick enjoyed meeting them.  Next to them were Phineas and Ferb (my favorites), so we stopped in to meet them.  We used the magic pass to meet them because the line was long.  Phineas spotted us waiting, and pointed his handler at us, which made smile.  The handler came to us and told us that they were going to take a break, but we would be next, and had us stand in the shade (thanks nice handler, it was a hot day).  When they came back out they came right to us, and got hugs from all the kids, it was a great encounter.

We thought that Patrick would enjoy a stunt car show – what car obsessed kid wouldn’t like that?  So we headed in and got great seats.  The show was a little too slow, and Patrick just wasn’t having it.  We decided that it was time to be done.  So we headed out, and said goodbye to my cousin.

We came back to our villa, and all took a rest.  Emily spent some time getting Patrick’s tubes (TPN) ready to go back on.  Tonight was Christmas at GKTW so we needed to be up and have dinner on time.  We woke Patrick and headed to dinner.

Patrick is really good at not eating anything until we are finished with our food, and then he started to nibble on things.  Tonight was no exception.  We finished our food, and he kept asking for mashed potatoes.  The beauty of GKTW is they prepare food in the most allergy friendly way possible.  Usually mashed potatoes have milk and butter in them, which are no-gos for Patrick.  But here they are safe.  Patrick nibbled on potatoes for 20-30 minutes.  Which put us a little behind schedule but that is ok.

We headed over to meet Santa.  The line was long.  We did all we could to entertain Patrick, but it took some doing.  Patrick met Santa, and then picked out a present.  A transformer, i’m not sure he would have picked that out before yesterday.

When we finished with Santa the Christmas party was almost over, so Patrick met some of the characters at the party, and it was over.

He decided to ride the carousel.  GKTW has a carousel, that runs all day long, and you can ride as many times as you want.  This time around Patrick rode twice.

I was in the mood for ice cream, so we headed over to the ice cream palace (also all you can eat, open 14 hours a day).  Emily noticed that they had popsicles at a party a few nights ago, so she decided to ask for one for Patrick, lucky enough they had some.  Patrick would say “take a picture of me eating the popsicle” and stick the popsicle in his mouth.  In my mind if that will get him to eat he can have as many pictures as he would like.

Today was a pretty good day.  Thanks to my cousin Leah for driving the 90 minutes each way to hang out with us, and sorry to make you wait so much.

Tomorrow the plan is to back to the Magic Kingdom for one last Disney day.  We might end up missing the Animal Kingdom park, but Patrick wants the rides in Magic Kingdom, so tomorrow we’ll make him happy.

We are almost at the end of this wishing week, we’ll be sad to leave GKTW.

Here are a few pictures from today – we didn’t take many:

 

Universal Studios (Wish Trip Day 4)

Today started off with Patrick having a rough night.  I’m not sure what time he woke up, but he didn’t want to go back to sleep.  When we finally let him get up, he was super tired, and quite grumpy.  We got up and got him ready.  We went to breakfast, but decided we would take a slow morning to see if we could get the day back on schedule.

Wednesday mornings Give Kids The World (GKTW) has horses for kids to ride.  Many of the kids haven’t had the chance to ride a horse.  Patrick had ridden one long ago at a fair, so it was a good experience for him.  He was more interested in the buckles and straps on the sadle than actually being on a horse.  At the end they gave him a hat, because he was now a cowboy.  He tried to give the hat back because it was too big for him.

We came back to our villa and Emily tried to get Patrick down for a nap.  That took some doing, but it worked.  We all fell asleep, I set an alarm.  I didn’t want to miss the day because we got a late start and got caught by rain.  Patrick decided again he wasn’t really sure that he wanted to get up.  We coaxed him up.  It was 11:30 when we got out the door.  We stopped in at a Katies Kitchen a rebranded Boston Market for some takeout lunch.  Emily ate while I drove to Universal Studios.

When we got to Universal we were smart and asked about seeing characters.  The Dispicable Me characters were out, so we headed that way.  Patrick wasn’t really impressed.  He wanted to ride a roller coaster, which is his way of saying that he is bored and wants to have fun.  There was a kids zone not to far so we headed that direction.  Patrick wasn’t sure he like it, but again wouldn’t tell us that.  As I got off I noticed that there was no line, so we asked to ride again, and they had no problem with it.  That time around Patrick giggled, and laughed through the ride.

We wandered around a bit, and decided that we would try to meet Captain America, but we needed to hurry because we wanted to try to see Sponge Bob as well.  So we hustled over to the other park to see Captain America.  When we got there, Captain America was no where to be found.  People were waiting around for Spider Man.  I stopped in to ask and the worker kinda brushed us off, and aid well he might be out later, but you never know.  That kinda bugged me, so I complained a bit to him, probably shouldn’t have done that.

We got back to the other park and met Sponge Bob.  And Patrick Starfish.  Kinda fun to say the phrase “Patrick meet Patrick”.  Patrick was excited to meet the characters.

Emily had researched last night a few things to do today.  One of the things she was excited to see was a stage show about animals that performed in movies.  I wasn’t sure how Patrick would do, but we were in the right place at the right time.  When we arrived, an employee took to Patrick and chatted with him until it was time to go into the theatre.  We got front row seats.  Patrick did fairly well.  The animals did great.  We were told to stay seated and we would be able to meet an animal.  We followed the instructions, it felt kinda funny to have them usher everyone out of the theatre.  But we got to meet Marley from “Marley and Me”.  A very nice gentle dog.  Patrick was happy to see the dog, but more interested to play with the head trainers radio.

We got out of the show, and it had been raining, but cleared up by the time we got out.  It was almost time to meet Dora (one of Patrick’s current favorites).  So we wandered and found Bumble Bee the Transformer that he could have his picture taken with.  Bumble Bee really wanted to interact with Patrick, but that was fairly difficult to do when you are dressed as a car.

We headed back to where Dora would be.  We sat on a curb and didn’t tell Patrick who was coming.  When the music started to play, Patrick started to smile, and then he spotted Dora and Boots.  He was super excited.  They characters danced around, and Dora had a bit of a costume malfunction in that the back of her head was coming open, and they pulled back.  I was afraid that she was done, but came back just in time for Boots to join her and start taking pictures.  Patrick was super excited to meet them, and see backpack.  He was also excited to see Diego.

We decided to head back over to Islands of Adventure to see Captain America.  We got there a little early.  So we hung out where we thought they would come out.  The super heros came out and Captain America wasn’t there.  I was worried that he decided to take the afternoon off.  But we walked to where he hangs out, and he was there!  After 4 tries, we succeeded in meeting Captain America!  Captain America chatted with Patrick and showed him his shield.  We got a great picture with him.

We had checked off all the goals for today.  So we decided that we would wander back up to Hogsmead, get some Butter Beer and take Hogwarts Express back over for the parade in Universal Studios.  We had received tips on where to be to see Dora in the parade.  To get to Hogsmead you have to go through Dr. Seuss land.

On the way through Dr. Seuss land we spotted the Cat in the Hat, and they pointed us in the direction of other Dr. Seuss characters.  The last character we met there was The Grinch.  He had a lot of fun with Patrick, including picking his nose and wiping it on Patrick, Patrick proceeded to pick his nose and wipe it on Grinch.  They played for a few minutes, we were all laughing when we walked away.

Patrick saw the One Fish, Two Fish ride and declared that he wanted to get on that ride.  Since we didn’t really have anything firm to do we said sure, and since I rode it with Patrick yesterday it was Emilys turn to go with him.  He laughed the whole. Chances are good he’ll be talking about the fishy ride for a while.

We got to Hogsmead, and grabbed some Butter Beer, and headed for Hogwarts Express.  We arrived back in Universal Studios, and went to the spot we had been told about.  It took the parade a long time to get to use, so we let Patrick run a bit.

The parade arrived with all of Patrick’s favorite characters yet again.  Dora and her crew stopped just down the street from us.  Patrick was fascinated with them, the crew came by and high fived Patrick.  One of the flowers chatted with Patrick for a long time, she let him touch her costume, Patrick loved it.

From there we hit a few more rides and decided we were done.  We headed towards the car and came back to our villa.  This was the latest we had been out all week.  The rain stayed away pretty well, so all the rides were up and running.

The GKTW activity tonight was Village Idol, one thing that Patrick wouldn’t be into, so we ordered pizza to our villa, and had an evening in.  GKTW offers a non dairy pizza, something that we haven’t seen anywhere else.  Patrick actually took a few bites of his pizza which was great.

As Patrick went to sleep he talked about meeting Captain America, the fishy ride, and Dora and Boots.  He seems to process the day as Emily helps him go to sleep, so we find out what he really liked at the end of the day.

On the schedule for Tomorrow is Epcot and another park (haven’t decided which).  Sounds like my cousin is going to come down and spend some time with us which will be fun to have a local.

Here are some pictures from today:

 

Islands of Adventure (Wish Trip Day 3)

Is this really only day 3?  Seems like we have been at this for a long while.

Today we did our normal morning routine (mommy ended up spending the last few hours of the night helping Patrick sleep), and set off for Universal Studios.

I yet again had trouble spotting the handicap parking instructions.  This time it was easy enough to fix.  However both parks have a blue line painted on the road to guide you to the correct place.  Why I can’t follow that I’m not really sure.  Oh well, that is a side note.

Getting into Universal Studios was fairly easy, crowds were fairly light.

We decided that we would head to the back of Islands of Adventures and start at the Harry Potter world which included Hogwarts, and Hogsmead.  There was a kids roller coaster there that Patrick really liked.  I rode the Adventures of Harry Potter ride which was fun to see, but was a bit much for so early in the morning.  We wandered around a bit.  Emily and I read the Harry Potter series of books in preparation for this visit.  Patrick didn’t really care, but it was fun to see.  We tried out the Butter Beer, which was pretty good.  We watched a wand pick its wizard, which almost held Patricks attention.

After Harry Potter, Patrick was bored, so we headed to the Dr. Seuss part of the park.  This was the kids part of the park.  It wasn’t busy.  We rode all the rides, which Patrick had fun with.

We decided we would head to lunch.  En route to that there was a guy in the middle of the walkway holding a “Meet Spiderman” sign.  Patrick is currently big into superheros, so we decided we would stop.  That was a good choice (see the pics at the bottom), Spiderman had a good chat with Patrick.  He also pointed us to where Captain America (Patricks current favorite) was.  When we got to Captain America he had to go, so we barely missed him.

We stopped in for lunch, Patrick was fairly grumpy because he was tired.  After lunch we headed back to where Captain America was supposed to be, on the way we were stopped so all the super heros could ride there motorcycles to wherever they go.  Missed Captain America yet again.

We wandered through the park looking for rides for Patrick.  It started raining.  Today we were prepared with umbrellas for Patrick and Emily.  We ended up back in Hogsmead and decided that we would take the Hogwarts Express to the other park and see what things were like there.

Hogwarts Express was a fun ride.  We had a cabin to ourselves because Patrick was in a wheelchair.  Reminded me of a newer version of an Italian train, which I think is what they were after.

We checked out the newest part of the Harry Potter world which was diagon-alley.  It was done very well.  Outside diagon-alley was the Knight Bus, which Patrick refused to go near the wheels because they were scary.  Patrick has a phobia of some wheels.

We headed down to Minion Mahem, which Patrick says he liked, but I’m pretty sure he didn’t.

We took a break and took Patricks tubes off, and decided that we were tired.  So we headed back to our car, and drove back to Give Kids The World (GKTW).  It poured rain on use as we drove back.

We all took a good nap.  When my alarm went off I didn’t want to get up, but I did.  When Emily tried to wake Patrick he wouldn’t get up, so we let him sleep a little longer.  We got his TPN ready, and got ready for a special guest that would be arriving at bed time.

We finally coaxed Patrick to get up, and headed to dinner.  Patrick isn’t eating much this week, which meant he got bored quickly.

Tonights activity was Mayor Clayton’s birthday party.  Patrick had a great time at the party.

We also too a few minutes tonight for Patrick to turn in his start to be put on the ceiling of the  Castle of Miracles.  Patrick also picked up his pillow, which was grown on the pillow tree by a magical owl (makes sense to me because I was there).

We headed back to our villa to get Patrick ready for bed and ready for our special guest.

At a little after 9:00 there was a knock at the door.  Mayor Clayton came to tuck Patrick into bed.  Patrick hoped into bed, and Mayor Clayton tucked him in and gave him a good night kiss.  Patrick thought this was great.  As Emily was putting him to sleep Patrick asked if Mayor Clayton would come in the morning and help him take a bath.

Today was a fun day.  Tomorrow the plan is to go back to Universal Studios.  Emily is currently researching what we missed today.

We took a lot more pictures today.  Here are a few.

 

Magic Kingdom (Wish Trip Day 2)

For the first time in a long time, Patrick slept the whole night in his bed without mommy while traveling.  I think I can say we were all very tired after yesterday.

We started off the day introducing Patrick to a jetted tub.  He wasn’t so sure about it until dad came into the room, and then he had to show off so he splashed, and kicked water everywhere, which made the jets ok.

We got everything together, someday we will blog about what it takes to get Patrick out the door.  I’ll just say that it is a process that takes a lot of time, and preparation, and usually a few moments of “what about this” to be figured out.

Give Kids The World (GKTW) has characters come to the resort during the week.  Today Goofy, Mary Poppins, and Mickey were at the resort to meet the kiddos, and take pictures.  We were also instructed that if we brought the stuffed Mickey, we would be able to get it signed by Mickey.  We met Goofy first, and he decided that he would sign it as well, which was fine by us.  After the fact Patrick decided it was naughty, which makes us smile.  Patrick liked meeting the characters, and having a little more time to spend with them than in the parks.  We had a nice chat with Mary Poppins, if you ever get the chance to meet her in one of the Disney parks, take it.

We set out for Disney World.  I missed the turn for handicap parking, so we had to go around.  Once we got parked we headed towards the park, only to meet a long line for the ferry.  We got to wait for two ferries, and finally made it on.  After we got off the ferry, we got to wait in yet another line to go through security (that was a large crowd trying to get through).  Then yet another line to actually enter the park.  At this point, I don’t think any of us were in a very magical spirit.  We had to stop and get a sticker that identified Patrick’s stroller as a wheel chair, which was another line.  However this line was different, one of the cast members noticed Patricks GKTW button and took special care of us, which was appreciated.

After roughly 2.5 hours since leaving GKTW we were finally ready to see the park.  Not intending to complain here, just remembering how the day went.

Patrick loves autopia in Disney Land, so we headed to the “Tomorrowland Speedway” (i.e. Autopia) for the first ride.  We presented our special access pass, and hopped on the ride.  Patrick did his normal, lets not steer so we bump as hard as we can into the guide rail (thanks Emily for being willing to take the abuse of these maneuvers.)

We wandered around taking in the park riding a few rides.  Patrick wanted to meet Donald Duck, so we headed to where he spends his days.  A cast member saw his button, and said follow me, he lead us through a store, and into a back hallway.  Next thing we knew we were standing next to Goofy and Donald, he had taken us to the front of the line through the exit.  Minnie and Daisy were across the room, and they also took over to meet them.  Patrick was super excited to have met Donald (even remembered it in our prayer tonight).  We had a similar experience meeting Tigger and Pooh Bear.

We snagged some lunch.  I had mac and cheese with pot roast on top of it – don’t knock it until you have tried it.  The only problem with it was that it was hot, and the day was quite hot as well.  Patrick was starting to zone out, so we decided we would checkout the Wish Lounge.  This is a room in the first aid building set aside for wish kids to take a break, and gives them a place to take care of medical needs.  We knew that hopes of getting Patrick to nap were very low, but a rest would do him good.  I set a timer, and he laid with us on a big pillow until the timer rang.  He almost fell asleep a few times, but resisted it well.

We caught a few more rides, and then it started raining.  At first I was smiling at all the people that were hiding under any cover they could find.  It sprinkled for about 20 mins, and then the rain hit.  We were drenched, and Patrick wasn’t so happy about it (he really doesn’t like having rain or snow on his face.)

Because of the rain many of the rides were closed, so we went and met Mickey again. This Mickey was different in that he talked.  Patrick wasn’t so into Mickey coaching him to fly like Peter Pan, but he was super impressed that Mickey could talk.  Tinker Bell was in the same building, so we took the time to meet her as well.  She spent a long time talking to Patrick, he didn’t really catch what she was saying, but enjoyed meeting her anyway.

We rode It’s A Small World one more time.  That ranks as a close second for favorite rides.  (And in Patrick’s opinion the one in Disney Land is better).  It was time to go.  We caught the monorail back to parking (much faster than the ferry).

We got back to GKTW and got ready for dinner.  We called a train to come pick us up (a fun way to get around the resort).  We went out on our porch and waited.  Patrick took my camera and started taking pictures, mainly of our car (See the photo gallery, I’ll include a few).

We had dinner then it was time for Halloween.  GKTW has Halloween and Christmas every week.  Since it was raining Halloween was inside which made it a little cramped, but fun none the less.  Patrick ran around the room getting candy full of all kinds of things he is allergic to, but thats ok, he was having fun collecting candy.  We then got his face painted.  When we got done with that the party was a little too overwhelming for him, so we headed out to see what else we could find to do.

As we were walking Patrick rubbed his face, and got face paint in his eye.  We detoured to the nearest rest room, to try to get his face paint off.  When we finished he looked kinda like a zombie.

After wandering a bit more, we stopped in for ice cream.  GKTW has soy and rice ice cream, both are safe for Patrick.  We decided we would try to get him to eat rice milk ice cream.  The only problem was that Patrick will only eat while bread this week.  He wouldn’t go near the ice cream.  After we forced him to eat a bit, he said it was good, but still wouldn’t eat it.

We made it back to our room, and did the evening preparations for Patrick (almost as much as morning preparations).  Emily got Patrick to sleep while I talked to some family to make plans for the end of the week.

Today was a fun day.  As Patrick was going to sleep, he was no longer Boots (from Dora the Explorer), he was now Mickey, Emily is Pluto and Minnie, I am Goofy.  We’ll see how long his name will be Mickey, but that means today was a very big day for Patrick.  His wishes truly were granted today.

We are so thankful for all that do so much for Patrick.  The volunteers here at GKTW, and the countless people that help us so much back at home.

By the time I sleep I will have taken 25,000 steps according to my fitbit.  That is roughly 12 miles walked today, it is time for bed.

PS – Sorry for the rambling of this post, I’m trying to record memories that we can reflect on.

We have taken some pictures, but all of the pictures taken with the characters will come at the end of the trip.  Here are some pictures from our cameras taken today:

 

 

Off to Orlando (Wish Trip Day 1)

Today we set out for Patrick’s wish trip.  We woke early.  Patrick was very excited.  When we got through security at the airport (always amazes me what security comes up with as the official policy – different every time – and we aren’t allowed to tell them what the policy is, even though we know it.) Patrick excitedly waited for our airplane to arrive at the gate.  Once it did, he watched all the bags come off, and all the happening around the plane.  Then we boarded the airplane.

The flight was fairly uneventful.  Patrick played, and kicked the seat in front of him, wanted to un-latch the tray table, and play with the video screen in front of him.  And when we tried to get him to nap – he screamed, and kicked.  This is normal behavior for flights.

When we arrived in Orlando we were met by a nice man named Bill, from Give Kids The World.  He helped us find our luggage, and then we sat down with him to get a brief orientation of how to get to Give Kids The World (GKTW), and what to expect when we got there.  He then helped us to our car, and made sure we departed safely.

When we arrived at GKTW we had a very personal checkin with yet more information.  They also presented Patrick with a stuffed Mickey, he immediately hugged him.

Emily and Patrick rode in a golf cart and I followed in our van to our villa.  Larry the GKTW volunteer showed us around our villa.  I have never seen a place that has a kids sized jetted bath tub, and yet the grown-ups have a shower.

We headed off to dinner – I was hungry and no-nap Patrick was running wild.  We had dinner at the Ginger Bread House (sponsored by Perkins) that was staffed by a bunch of very helpful volunteers.

I got done with dinner before Emily, so while she was having desert, we snuck over to the Carousel (free, and ride as many times as you want).  Patrick happily rode, when we finished Emily met us at the gates.  Mayor Clayton and Ms. Mary (they were married a while back by Mother Nature) were greeting guests, Patrick was excited to see them.

We hopped on a GKTW trolley, we dropped Emily and Patrick off at the Candy Land party, and I headed to orientation.

From what I hear Patrick had a great time at the party, he gathered a bunch of candy (which he probably shouldn’t eat), and a prize.

I got officially oriented on our tickets to Disney World, Universal Studios, and Sea World.  If anyone is like me and searching to find out if GKTW gives you disability access passes, the answer is yes.  We have everything we need to make our time at the attractions magical and wonderful.

When I arrived back at the villa, Patrick was ready for bed.  He is now asleep.  Tomorrow Mickey and some of his friends come to GKTW, and then we will go visit them at the Magic Kingdom.

Been a busy day, looking forward to fun tomorrow.

Here are a few pictures from todays adventures:

The “McDonald’s” House

Making this a quick little update. We got a call yesterday morning to preregister Patrick for a procedure scheduled for Friday morning. Check in at 5:30 a.m. I spent most of the afternoon trying to confirm that we knew all that we were scheduled for, and then booked a last minute flight from Utah to Nebraska.

We made a mad cleaning/packing scramble last night and this morning. Patrick went to his second day of preschool, then we picked him up early and went straight to the airport.

The flight was uneventful, despite having to carry so much IV fluid that it filled an entire carry on bag. (Had to bring TPN and the substitute fluid, too.)

We arrived at the Ronald McDonald House a little before 6 p.m. When Patrick heard where we were going he tried to put in his favorite order, a powerade and fries. There was none of that here, but we were here just on time to get dinner brought in by one of the local hotels. Patrick was excited about the yummy roast potatoes and actually ate dinner for the first time in several days.

Then, we let Patrick play in the toyroom while Brian brought in our luggage.

What a refreshing change staying here is! Instead of a hotel where everything is overwhelming and nothing is kid-friendly, we find ourselves nestled into a very homey little environment where I already know some of the other families from our support group and everything is designed to make kids and their families feel at ease.

I just set an alarm for 4:40 a.m. so we can be up and on time for check-in. Hoping to be posting some good news by tomorrow afternoon.