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:



Driving "bumper cars"

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:


Patrick and a Santa statue.

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:


Can't you see the look of excitement on his face while meeting Boots?

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:


Meeting Spiderman.  Thanks Spiderman for taking a few extra moments with Patrick.

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.


The masked crusader - Patrick.

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:



Our own personal welcome sign for the next week.

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:

Granting a wish.

Patrick has been learning about Disney World.  For a time when asked where he lived he said Disney World.  Patricks wish granters would send a package every once in a while to let him know that it was still happening.

A few months ago we got the dates for the trip.  There was a lot that needed to happen between then and the trip, so it got put off in our minds.  We had a trip to Omaha, I had a business trip, Patrick started Kindergarten, and we had an attempt at camping (gee most of those should be blog posts, I’ll see what I can do about that).  A few weeks ago we got a call from one of Patricks wish granters Beth, she told us that they were working on planning a wish granting party.  Something to tell Patrick that his wish had been granted, and he was on his way.

About a week ago we got details of his wish granting party.  And started inviting family, and close friends (sorry to those that didn’t get invited, the group was fairly large and we didn’t think it would be right to go larger, we still love and appreciate you).

We had coordinated the details with Beth.  We would send Patrick to the neighbors, the guests would come, and then we would surprise him, and then an ice cream truck would come as the cherry on top.

As with all things in our life, things change.  Emily started exploring some new therapy for Patrick yesterday.  They said great would it be possible to come tomorrow afternoon.  This caused our plans to change a bit.  The new plan was that I would come home early and meet everyone, help Beth and Natasha setup and then Emily and Patrick would arrive home from therapy to a group of friends.  With the contingency that if they got back too early they would play at the neighbors.

I got home from work early thinking I needed to help clean the house.  Cleaning the house with Patrick around is sometimes an effort in insanity.  When I arrived home Emily had the house in great shape.  I sat down and read for a while.  Then I decided to grab some chairs.

As I got outside Beth pulled up with balloons.  We tied balloons around our front yard.  Guests started arriving.  Natasha arrived with more balloons, which made things look all the more festive.

The majority of the guests arrived, and I texted Emily to let her know we were ready.

Patrick was taking in all his guests at his surprise wish granting party.

Patrick was taking in all his guests at his surprise wish granting party.

A few minutes later Emily pulled into the drive way.  Patrick looking out his window noticed we were all there, and started grinning.  Emily reports that Patrick saw everyone and yelled, “Hey! Why everyone here?” Then, grinning ear to ear and climbing out of his seat before we were even parked, “I want talk to them!”

Patrick got out of the car as fast as Emily could get his door open.  Ran to the driveway and just grinned.

He saw the present that was waiting for him on the porch and ran to it.  Beth cut him off, and presented him with a certificate stating that his wish was granted.  Then he resumed his quest for the gift.

He pulled all the things out of the gift bag, and around the corner comes music from and ice cream truck.  It stops at

"You are officially granted your wish"

“You are officially granted your wish”

our house and Beth leads him over to the truck.  Emily got there just in time with Patrick safe (soy) ice cream.  Patrick was more fascinated with the van than the ice cream, but none the less it was a hit.

The rest of the evening was spent with everyone getting ice cream, and Patrick running from person to person hugging and saying hi to them.

Then Beth let him play with her car (big points from him).  And she led him up and down the street naming all the car makes, which is one of Patricks favorite games.

I pulled Patrick aside and told him we were going on a trip on Sunday, and that we were going to go to Mickey’s



other house (he’s been to Disney Land a few times).

The night was great.  Big thanks to those who came.  Even bigger thanks to our wish granters Beth (and her husband Tim who accompanied her tonight), and Natasha.

We are super excited to go on our adventure.

The ice cream truck came just for Patrick.

The ice cream truck came just for Patrick.


The left overs of the balloons.  Each child took one home as well.

The left overs of the balloons. Each child took one home as well.

Wishing a wish.

So its been a long while.  Happily we can say that Patrick continues to grow and progress.  It is an understatement to say that he keeps us busy.  I guess in this case you can say no news is good news.  I’m going to try to pick up the blogging duties for a bit.  We’ll see how that goes.  You will soon find out that Emily is the writer in the family.

To understand this post we need to go back a year.  A year ago about this time we were in Omaha hoping and praying that the docs there would be able to place a new central line.  The docs here did their best but we unable to place a central line that would work for transplant (still love and trust the docs here).  Every once in a while we have moments that remind us just how fragile  the balance we have found with Patrick is, this was one of those moments.  The docs in Omaha were able to place a new line, but were quick to remind us that he is more or less out of central line access, and line placements were only going to be harder.

We decided that it was time to explore Make-A-Wish for Patrick.  This is something that we discussed off and on since Patrick was very little.  We had decided that he wouldn’t understand how special his wish is and wanted to wait as long as we could.  The opposite of that is if something were to happen to Patrick we would regret not giving him the experience.  The experience told us that it was time to explore things.

We we got home from Omaha, it was the start of the school year, and there was a lot going on.  Emily got in touch with Make-A-Wish early this year.  We followed the process, and waited to hear.  In early March we were notified that Patrick would be able to make his wish.  We were to bring Patrick and a small group to the wishing room to make his wish.  Small group was interpreted to grandparents.

We received a key to the wishing room in the mail.  Patrick was (and still is) fascinated with keys and cars.  We ended up hanging the key on the wall so he knew it was there but could wander around with it (and probably lose it).

Finally the day came.  We took the key down from the wall.  We met his wish granters for the first time.  Wish granters are volunteers whose priority is to make sure that we wisher is completely spoiled.  They are also our interface with Make-A-Wish.  Our wish granters are Beth and Natasha.  Who succeeded in making the day special for Patrick.

Patrick throwing his wishing token in the fountain at Make-A-Wish.

Patrick throwing his wishing token in the fountain at Make-A-Wish.

We gathered as Make-A-WIsh and got to know our wish granters a little, and then we went on a tour of the building and the grounds.  They have gardens that are open to all wish families, kinda as a place to go to remember the memories made (jut the thought of this has my heart heavy).  We threw a token into the wishing fountain.  At least Patrick did.  Emily and I kept our tokens, we’ll go wish when the time is right.

Patrick took the opportunity to run around the gardens, over the bridges, and any where else he could think of to go.  I tried to reign him in, as I’m usually the strict one.  The wish granters didn’t bat an eye about letting him be out of control for a while.

Our tour took us upstairs.  They showed us where the wishing room was, but before that each member of the group was given a little slip of paper.  We were asked to write a wish on it for Patrick.

We also got to help Patrick decide what his wish was.  We had to push him in a direction, but we were pretty sure that he would love the experience at Give Kids The World ( and the attractions in Orlando.  We have heard magical things from other wish families about GKTW.  I must admit that it was hard to not have him know exactly what he wanted, maybe that means we have spoiled him too much.

Opening the wishing room.

Opening the wishing room.

Finally the time came to go into the wishing room.  We got out his key and went to the door.  I helped him open it.  It opened into a circular room with glass floor.  In the middle was a waterfall that went from floor to ceiling.  Quite the awe inspiring room.

When we all got into the room we each read our wish for Patrick.  What a touching intimate thing.  To have his parents and grand parents each share a special wish for him.  Tears were shed, but it was a great experience.  We have those sheets of paper, they will be memories for a life time.

Following the path to make his wish in the wishing room.

Following the path to make his wish in the wishing room.

Finally the time came to make his wish.  The room went dark, and spots on the floor lit up to show Patrick the way.  I helped him go from colored spot on the floor to colored spot on the floor. We finally made it to the wishing spot.  Patrick put his wish in a tube, and then put it in the wishing stand.  His wish was made.

Then we went and had doughnuts and cupcakes.  Two things Patrick was into at the time.  Emily and I got to fill out paperwork.  And Patrick had fun with the personal attention he was getting.  Because Patrick runs a high risk of dehydration in the summer heat we asked that his trip be scheduled for the fall.

Sending his wish to the wishing wizard.

Sending his wish to the wishing wizard.

His wish was made, now we just had to wait until it was time to go.

Wish made.

Wish made.

Summer vacation

Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.

Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.

Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.

A practical life mommy school lesson on how to sweep.

A practical life mommy school lesson on how to sweep.

And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.

Teddy Bears

B is for Bears, and a teddy bear picnic.

The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall.

Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.

In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond.

Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.

The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.

Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.

So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.

Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.

So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.

Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.

Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.

And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.

Builder Patrick

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.

Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.”  Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?