Day 6 - Day off

DAY 6 - DAY OFF

We woke up this morning to a very beautiful and hot day. It was sunny and upper 80s!

We decided to take a day off the big parks, and instead planned to do some fun activities and check out Legoland.

We started off the day with McDonalds for breakfast. By this point I was in desperate need of a Mocha Frappe! :) Then we went to cash in Callie’s winning token at Pirate Island Adventure Golf. We played a great round of golf and had a lot of fun.

                                            The kids at Pirate Island Adventure Golf

                                           There was a stinky part of the putt-putt course :)

After our golf outing we decided to go see Legoland. We picked up our free passes from the Village that morning and headed out! Ethan was so excited - he is VERY into Legos right now so we figured this was a perfect place to go! We made the 45 minute drive to Legoland only to find it was surprisingly not at all crowded. Hmmm. After a few minutes of circling the empty parking lot trying to find another entrance where all the people were, we looked the park up on our phone. Yeah, it was definitely closed that day! Oh we were so disappointed! So we drove all the way back to the village.

By that point we decided it was too late and too hot to try and make it to Hollywood Studios or Epcot (those were our last two parks on the agenda). We decided to take the day off and enjoy the Village.

We unloaded the car back at the villa, got into bathing suits, and headed to the pool.

                                                   Sand castle in front of the pool

We spent the afternoon playing in the water - they had a splash pad and beautiful pool. The kids had so much fun - and so did we!

                                                   Surfboard pictures at the pool

                  We tried to explain to Ethan he needs to put his arms out to look like he's surfing. :)

After a few hours of swimming in the sun we decided to take a break for a late lunch. We headed over to Katie’s Kitchen (Boston Market) and picked up a huge lunch to take back to the villa. By that point we were too hot to eat outside. We hung out around the villa trying to rest and cool off for a bit - Ethan does not feel that great when it gets really hot out. He gets pretty cranky and tired, so we hoped to let him relax and get back into a good mood.

                                                                 Ordering our food

That night the Village hosted Kid’s Night Out/Parent’s Night Off. It was where the kids in the Village all met up at Amberville Train Station and each child had a volunteer to spend the evening with. Our volunteer group was the girls’ softball team from Grove City Community College. They were having a softball tournament that weekend and they all decided to come over and spend some time with the kids at the village. So nice of them! Callie and Ethan each picked a girl to hang out with and said goodbye to me.

The kids played at Amberville for a little bit, then they all went to the Gingerbread House for dinner, and then to Julie’s Safari Theater to have “Village Idol”. The kids and their volunteers all picked songs to get up on stage and sing/dance for everyone else. Our kids and their girls picked “Thriller”! And I wasn’t even there to influence them! :) I had a video to put up here of the kids doing their dance, but unfortunately I'm having major difficulties getting it transferred over. :(

While the kids were off having fun John and I took a little nap. Yeah, I know we are so old. Lol! This had been an exhausting week!!! After that John and I went and explored the Village on our own for a bit. We played some dinosaur putt-putt, played pool, ping-pong, basketball, and took a nice long walk all around the village and checked out the playground. We really enjoyed our evening too!

                                                      John picking "Old Elmer's" nose

At 9pm it was time to pick up the kids from Village Idol. After we got them we decided to go grab some ice cream since we hadn’t had any today. :)

Then it was time to head back to the villa and for baths and bed. The plans didn’t really work out for us today, but we had an awesome day soaking in the sun and having fun at the pool and all the fun things to do at the Village!

Hospital stay

So this past week we've had a bit of a trouble with keeping Ethan's INR therapeutic. He's supposed to be in the 3.0 to 3.5 range. This is the best place for him to be in in terms of how thick/thin his blood is. Well on the 15th we did a blood check at home to see what his INR level was. We do these checks at scheduled times usually once every week or two. His INR level on the 15th was 3.8. We didn't think too much of it since it was only a little high. Then last Wednesday we checked again and our monitor read ">8.0"! I couldn't believe it! Our monitor didn't even read that high. We called into the doctor and they sent us to the lab to get a full blood draw. We all kind of had in the back of our minds that the monitor must've been wrong. Well Thursday morning we got a call from the hospital. It turns out the labwork showed that his INR was over 11.0! We were all floored. They wanted to admit him right away to monitor him and make sure he didn't bleed to death. We went in and settled in for our stay.

                                                    Ethan waiting around in bed

This stay wasn't terrible since he looked really good. His vitals were good and he wasn't covered in bruises or anything (surprisingly). They didn't give him an IV, hook him up to the monitors, or confine him to his bed. They did try to put him on restriction to his room, but he begged all the docs and nurses so much they finally gave in and let him roam the hospital. :) Basically we playroom hopped for two days!

Playing with trains

                                                          Making a train out of beads

Bringing a wagon of toys back to the room after the docs made him stay in his room :)

After a long day it was time for bed. We were exhausted - well I think I was a little more than him! :)

                                                                    Ethan sleeping

At 4:30 am of course they came in to do more bloodwork. What a terrible way to wake up from a good night's sleep! Poor little man. :( Thankfully they got his labs drawn on the first attempt. That is a pretty rare thing with him.

In the morning he went down to the cafeteria with me to pick out some breakfast. He wasn't in the mood for the hospital food. After breakfast we met with the docs for rounds and found out his INR that day was all the way down to 2.6! We were pretty surprised that his levels dropped so much so quickly! During this stay we met with Dr. Golden and Dr. Zahka. They both discussed the upcoming plans for another cath, bronch, and surgery. This process will start sometime in April. I'm just waiting around to find out the plans and the days - they're still trying to coordinate schedules with pulmonology. I also was able to meet Dr. Stewart quickly. He's the cardiothoracic surgeon there and seems very nice.

After chatting with the doctors for a while Ethan was ready for the playroom. Surprise surprise. :) We made our rounds again. We were even able to visit with some friends (thanks Danielle and Kurt for coming and visiting!)

                                                Ethan painting in the playroom

We met with nutrition that afternoon as well. Ethan has lost almost 5 pounds in the past month, so we're pretty concerned about that. He doesn't have that much excess so we definitely can't afford to lose any of it! Thankfully he's still on the growth chart so that's a big blessing! They want him to drink PediaSure to help get some more calories into his diet. Hopefully that will help him gain back some of this weight. However even though he loves chocolate milk, he doesn't want to drink this stuff. It's getting a little frustrating, but hopefully he'll start turning this around soon! This is definitely something we'll have to keep a close eye on.

                                                    Ethan trying to drink his PediaSure
The docs switched us from generic brand coumadin to name brand. They want to make sure that he didn't have a bad batch of medications or something since different companies produce the generic brands. We got the meds from the hospital pharmacy that afternoon and were told we were getting discharged! :) Yay!

                                                                Heading for home!

By the time we got out of the parking garage and out onto Euclid (our first street) Ethan was sleeping soundly in the backseat! Poor boy doesn't get enough rest in the hospital!

                                                         Sleeping on the way home

Saturday morning we did another blood test at home to check the INR levels. He is at 1.9. Friday we were told that if he got below 2.5 we would have to restart the Lovenox injections. These are the shots he has to do in the belly -- definitely not a fan of these at all! Needless to say we had to do those and will have to continue them until he is back in his therapeutic range. Hopefully that will be very soon!

Today's blood test showed that he was 2.1. Since we were still too low we had to continue with the Lovenox shots today. His poor little belly is bruising terribly from it already. :( Hopefully tomorrow's bloodwork will show numbers good enough to get off the shots!

We will have to continue doing the daily blood checks at home. Then tomorrow we will go into the lab and get a full workup. They are going to check his INR then as well as checking his CBC to make sure he doesn't have a hidden infection somewhere. If he does that might be a reason for this crazy spike in his INR to begin with. We still really don't have a clue why this happened. Dr. Zahka said that he doesn't think we're going to get his blood all stabled out and where we want it until we fix his pulmonary artery. That might be causing this after all, so we'll just be up and down trying to stabilize him until surgery. :( Hopefully the bloodwork will give us some good answers. That also could be a cause for the weight loss.

Ethan also woke up this morning showing signs of pinkeye again! It seems that our little time in the pod has exposed us to more sickness again! :( I'll have to make an appointment in the morning to get him some new medication for this at the pediatrician.


Thank you so much for all of your prayers and messages of support! I also want to thank everyone who donated for the Hoops for Heart that Callie is participating in. She turned in $350 to her school! Awesome! :) I'll keep you all posted with any changes and with the information we get about Monday. Please keep him in your prayers!

CARDIOLOGY
Yesterday we spent the day at the hospital for Ethan's cardiology appointment. It was a long day (our 10 am appointment lasted until 2!). Ethan had an echo to start the day off. Unfortunately the echo didn't turn out quite as well as we had hoped. They weren't able to find his left pulmonary artery again. This is the artery that keeps clotting off that we keep working on. The last time we couldn't find it was right before this last cath. It couldn't be found because it was completely clotted off. We can't be 100% positive yet, but it seems that it's clotted off again. This is pretty shocking since it was just opened and enlarged at his last cath less than two months ago!

                                                             Ethan during his echo

The docs are discussing some options, but Dr. Zahka (our cardiologist) said it looks like Ethan will need another cath in April. :( They are going to look at putting in a shunt since this clotting and stenosis seems to be getting a bit out of control. This will be a separate surgery though.

Dr. Royce (pulmonologist) talked with cardiology during the week. He told Dr. Zahka about his plans to take Ethan off coumadin and do a bronchoscopy and CT scan. Dr. Z basically said no way. Lol. But he is now saying we can do a bronch during the cath. That should give both sets of doctors some of the answers they need. Dr. Zahka mentioned the fact that we really need to see what's going on with his left lung before too much damage is done.

Please keep Ethan and the doctors in your prayers. We really need to figure out a way to stop this stenosis and keep Ethan's heart and lungs functioning at their best! I'll keep you all posted when I find out some more information. Dr. Zahka is going to contact me once he talks to Dr. Golden (our cath doc).

Now back to our trip!

DAY 5 - MAGIC KINGDOM

Today was another gorgeous weather day! Sunny and mid 80s!

We started out the day with a delicious breakfast at the Gingerbread House. Ethan woke up with a little case of diarrhea (or the juicy toots as he calls it!). Thankfully it was gone by late morning!

After that we headed to the Amberville Train Station to see the model trains and play some arcade games. Ethan worked on mastering Whack a Mole.

After that we loaded up the car and headed out to Magic Kingdom!

                                                    "Where Dreams Come True"

                                                       Magic Kingdom entrance

When we got there we decided to take the ferry across to get to the park. The kids were so excited to go!

                                   The kids playing with bubbles waiting for the ferry to arrive :)

                                        John and kids on ferry to Magic Kingdom

                                        Ethan lounging on the ferry bench on the ride

When we made it into the park we headed of course had to use our Photopass card and get some professional pictures with the castle in the background. I can’t wait to see how they turn out! All the pictures and video turn out with terrible quality when I download them onto here!

                   I apparently can never get a picture with EVERYONE looking nicely at the camera!

                                                                  Callie and Ethan

Then we went over to Frontierland and Callie and John rode the Haunted Mansion. Ethan and I stayed out since he’s not a big fan of ghosts. We watched a paddleboat load up and start off around the river. He enjoyed that.

While Ethan and I were waiting for John and Callie to come back from the Haunted Mansion we did a little exploring. It turns out we were right by It’s a Small World! :)

                                                              It's a Small World

                                Don't be fooled by his expression. He actually did like the ride :)

Of course we had to head over to Fantasyland once they got out of their ride. We rode It’s a Small World and the carousel. Then we decided to go eat lunch.

                                                           Lunch at the Starlight Cafe

After lunch it was back to Fantasyland to check out the places we missed on our first walk through. We rode the Winnie the Pooh ride and then I conquered my old fears and rode Snow White’s Scary Adventures. :)

Then we saw a sign for Mickey’s PhilharMagic 4D show. We all LOVED the show!

                                              Mom and kids by PhilharMagic entrance

After the show it was off to Tomorrowland. There the kids drove us around on the speedway. After racing we headed over to ride Toy Story Spin. That was a pretty fun ride where you get to shoot laser guns at aliens. Ethan enjoyed it a lot - and I have to announce that I beat the pants off of everyone! Lol!

                                                      Getting some ice cream

                                                   Callie driving on the speedway

Next we went to the Monsters Inc Laugh Floor. It was this cute comedy show where they pick people in the audience to participate in their jokes and stuff. Unfortunately I wasn’t feeling awesome at this point so I had to sneak out of the theatre halfway through the show. Apparently my aversion to ice cream did not go well with my decision to consume a root beer float earlier! Woops.

After that it was getting to be time for the Electrical Parade. We were really excited and lined up with tons of other people to see it. While we waited we were able to watch the Dreams Come True show at the castle. We bought some light up toys for the kids to play with. By this point Ethan was pretty tired and cranky. He started throwing a giant temper tantrum once his bubbles ran out and he wanted another toy. *sigh* I ended up having to find a corner to put him in (TWICE) because of this! He has to be one of the only kids to be put in the corner at Disney World! Lol!

Kids waiting for the "parade"

After a lot of waiting we found out that the parade wasn’t even happening that night! GRRR! Everyone was really disappointed at that news. So we headed over to Adventureland since we hadn’t made it to that part of the park yet. There we were able to meet with the fairies and explore the Swiss Family Robinson treehouse. It was a lot of fun and Ethan started getting a little happier getting some attention from the pretty fairies! :)

Callie was in Heaven for these! She's still very into fairies!

On the way out we were able to catch some of the laser light show on the Magic Kingdom castle and then some fireworks on our way out. Ethan was scared of the noise from the fireworks so unfortunately we weren’t able to sit and watch it from up close. :( We did find a man selling some awesome light up balloons though. I figured they would be like $5 a piece so we bought two. Well they were actually $15 a piece - WHO CHARGES $15 FOR A BALLOON?!? - but we got them anyway since the kids already expected them! Lol.

The castle at night

 very blurry picture of the Disney at night

We took the boat back to the parking lot and headed for home. When we got back to the villa we ordered pizzas from Mama Merry’s Pizza. Then it was time for baths and bed. Everyone was very tired after today, but we did have a great time!

Day 4 - Universal Studios!

DOCTOR APPOINTMENT:

Thursday we went to the pediatrician to see what’s going on with Ethan’s arm. He had his pneumonia shot 2 days ago and it has been terribly painful, swollen, and discolored. He has such a huge pain tolerance I was so surprised that this hurt him so bad. The doctor looked at it and said he had a severe allergic reaction to this shot. Poor guy! It’s starting to improve a bit, but she said it’ll take a few more days before he’s back to normal. We’ll just keep trying to convince him to move it around a bit, switch around with warm and cold on it, and continue with the Tylenol for pain.

As of yesterday his arm was feeling a lot better. So much better he was able to go to school! The poor boy hasn't made it through a whole week of school since before Christmas! I believe he'll be repeating preschool next year instead of moving ahead to Kindergarten. :( We'll find out that soon at conferences!

DAY 4 - UNIVERSAL STUDIOS

Today was probably the best day of the trip!

We woke up in the morning to the kids snuggling together reading Harry Potter. Needless to say Callie was excited to go see Hogwarts!

                                                   Kids in bed reading Harry Potter

We decided to just pick up breakfast this morning so we went to Burger King on the way to the park. Then we were off to Universal! Today the weather was gorgeous - sunny and 80s!

                                                         John and the kids at Universal

                                        The sun was apparently in Ethan's eyes :)

When we got to the park we were able to get a great parking spot since the parking attendants saw our Village Parking pass. They let us park with the VIP parking so that was pretty great! Everyone at Universal did an amazing job spotting our buttons and having us avoid any lines or waits! They were all so helpful and kind it was awesome!

We headed to the Islands of Adventure first (mainly because I couldn’t wait much longer for Harry Potter lol!) First we went to Suess Landing. The kids loved it there! The first ride we went on was One Fish Two Fish. You ride in these fish in a circle and they squirt water at you. They do have a little instruction “If you want to stay dry listen to me. Red fish up blue fish down.” Ethan and I were in blue so we went down...and lo and behold got SOAKED! Easily tricked I guess! Good thing Ethan loved getting wet! Haha!

                                                    John and Callie on the blue fish

 

Callie and Ethan

After that ride we headed over to hit a little roller coaster that Ethan was tall enough for. It was his very first roller coaster and he loved it! After the coaster was done we went for a ride on the carousel.

                              Getting ready for the roller coaster (that's his thumb's up sign lol)

Next we headed to Hogsmeade - Harry Potter’s area! We were all so excited to see it! We checked out the Hogwarts Express for a minute then went in search of the rides. Callie and John tried out the little roller coaster there - Flight of the Hippogriff. Callie loved it but thought it might be a little quick for Ethan, so we decided to hold him off of that one. It was pretty hot at that point so we went and bought a frozen Butterbeer to drink. I wasn’t sure how it would taste, but we were very happy to learn that we all LOVED it!

                                              Everyone trying out the butterbeer - yum!

                                   The kids and I at Hogsmeade - very crowded!

                                                                 The Butterbeer cart

By this point Ethan was getting cranky. I think we just weren’t quite used to the heat yet! We decided to leave Hogwarts for a while. We walked over to sit near a fountain that talked to people and squirted water at them. It was pretty funny to see the interaction between this thing and all the people around it. After checking it out a little (from a safe distance) I saw that any donations for it go to Give Kids the World Village! :) We had some drinks and snacks while we rested there.

                                                 Ethan resting by the gardens at Universal

Once Ethan was snacking and playing in the garden there I snuck back over to Hogwarts to ride the Harry Potter ride! I know I’m a nerd! :) I walked right on and loved the ride! Unfortunately Callie chickened out so I had to ride alone, but it was still great!

                                            The talking sorting hat in line for Harry Potter ride

After that I met back up with John and the kids and we headed back to Suess Landing. The kids wanted to ride the Cat in the Hat ride that we skipped earlier. Everyone thought that was a great ride too so Ethan was happy again. :)

After that we headed over to Toon Lagoon. There the kids played on Popeye’s ship and squirted waterguns down at the people on the water ride below. They had fun on the slides and ship toys too.

Over by the Popeye ship       

Kids at the squirtguns  

After that we walked around to check out Superhero Island on the way out. Then we headed to the other side of Universal.

                                                    Superhero island

                                           The kids and I in front of the Universal globe

Once we got in there we saw the big Shrek 4D line. We found out we were just in time for the next show, so that was perfect! Of course we didn’t have to wait in the long line, so we went right in to see the show. That was a great show! You watched a 3D movie along with the seats moving, water squirting at you, and you can feel the wind blowing at you! We all loved that show.

Of course we had to get pictures with Shrek and his friends after the show! We were given a pass for one free picture at Universal.

                                                   The kids with Shrek and friends :)

After Shrek we went over to the Kidzone. We hit a little pizza eatery first then went to play.

                                                The Woody sign for the pizzeria we ate lunch at

                                                       Then we found the real Woody!

There was a playground that the kids absolutely had a blast on. There were climbing ropes, slides, tunnels, and best of all a waterslide! I took the kids up to the top (there were a ton of stairs) and planned on sending them down together. Well apparently I needed to go down the slide too once I was up there. Nice. At least we were in a raft! Callie went first and then Ethan and I went down. It was pretty fun and I was surprised at how much Ethan loved it! He kept wanting to do it again and again, so from then on they let us use the elevator and the kids just rode together! Much better plan. :)

                                         Ethan and mom on the waterslide - he loved it!

                                                           Climbing on the ropes

                                                                       Dino drum

                                             Callie on the dinosaur skeleton slide

We were able to see Spongebob in the area so we went to stand in line to get a picture. He spotted us standing there and ran over to us to get pictures! I doubt the other people in line were thrilled, but the kids loved it! Lol.

The kids with Spongebob

After our pictures we headed to ride Woody’s Express roller coaster. This was the fastest one Ethan would have ridden so we were a little leery about it. Apparently that worry was for nothing. He loved it! In fact he loved it so much he threw a giant temper tantrum when it was over and we got off!

We decided to try out the ET ride since we were right next to it. It was a pretty cool ride. Ethan was a little spooked because of all the aliens and smoke everywhere, but he still said it was fun.

After that the park was almost closed so we headed out and went back to the village. At the village we picked up some free passes to try out Pirate Adventure Mini Golf. It’s this amazing putt-putt course right around the corner from the village. Definitely worth a trip if you’re even in the area! We all had a great time and Callie even got a hole in one on the 18^th hole! That gave her a token for another free game sometime!

                                    (bad pic) night fun at Pirate Island Adventure Golf

We were pretty hungry by this point so we headed to a Waffle House for dinner. After that it was back to the villa for baths and bed. When we got back home we saw that the “Gift Patrol” had left Gator Golf and Simon Flash games for the kids! The loved it - especially Gator Golf -- and played it all week!

                                  Here's a video of the kids playing with their new Gator Golf :)
                    (please don't mind the fact that Ethan doesn't feel the need to wear pants. ever.)