Onward through DisneyWorld!

Disney World Adventures, Day1, Part2:

 disney1-24 So we left off with all of us sobbing at the Princess Meet and Greet in Storybook Theatre in Main Street USA at the Magic Kingdom. Meanwhile the sign outside that used to read 25 minute wait was now a 75 minute wait – i’m sure due in large part to how much time our family sucked up in there! Walking out of there and through the store was one of the VERY few times anyone whined to buy something, and it was Kaylen who really wanted a Sleeping Beauty crown. We talked about how many other stores there were to get through and that we WOULD get her a crown or some ears, and that was the end of that. Truth be told, those Disney people are marketing geniuses. I am not a fan of plastic breakable crap for toys. But if I had money falling out of my pockets, I would have dropped a GRIP of cash on anything and everything my babies wanted. Honestly though – I was so proud of them. They never really whined to buy much of anything. I think they were too overwhelmed by the billions of choices!

Anyways – we headed out of there and over to the bathrooms to deal with Kendall’s bodily fluids.disney1-14 While we were standing there, I caught a glimpse of the Barbershop. The Main Street old timey singer people were all standing around Kendall’s wheelchair and helping her play with one of their little toys, and then they saw all the sisters, and they all just stood there for a few minutes getting this awesome one on one attention from REAL  LIVE DISNEY people! I put our names in at the Barbershop for the Pixie Dust treatment, and we waited the 20 minutes for our turn. Meanwhile the parade started up coming out RIGHT where we were standing to wait, so it was AWESOME to see that real close up! All of the girls, and even Ben and I, were in full on starstruck mode by this point. It was just SO MUCH magic coming at us fast and furious!

The girls got their hair all glitterfied, Kendall saw Mickey and Minnie and Donald for the first time and i thought her vocal chords were going to snap from the strain of her yelling – MICCCCKKKKEEEYYYYYYYYY!!!!!!!!!!!!! MINNNIIIIIIIEEEEEEEEEEEEEE!!!! DONNNALLLDDDDDDDDD!!!!! more tears from me.  Kaylen was actually near disney1-31 speechless and was just bouncing up and down and pointing – so excited she couldn’t even get words out! If you know Kaylen, you know that this is nothing short of a miracle, and you know EXACTLY that non-stop bouncing i’m talking about!

We eventually made our way back through the throngs of people to Fantasyland. I had no set plan for where we were going or what we were going to do – I just knew the general direction of the “teacups” which the girls had seen on the tear-jerking Disney commercials and knew they wanted to ride. We could not come to a unified front on riding the teacups (Ben and Kaylen said no way, I wanted everyone to ride together first, it was just the typical arguments we go through as a family with 6 opinionated people! And for the record, Namna and Poppa remained QUITE neutral during all discussions about rides!!!) So we headed over to Dumbo and everyone was happy! More magical joy on everyone’s faces! Our first ride!!!

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After Disney we went right next door to the Barnstormer Great Goofini coaster. It looked like a nice easy kiddie coaster. Kendall was very much in one of her “i want to be attached to mommy at the hip” episodes the entire disney1-45 trip, so she wanted to ride most of the rides with only me. We get settled into the backseat of the ride, do the inevitable slow clacky-clacky climb up a long hill, and we went HURTLING down that first hairpin drop/turn combo and i thought Kendall was gonna fly right out of the seat! She’s so light that I literally had to pin her down to the seat with my leg and hold her with my arm around her! That first turn she turned absolutely green with nausea, eyes rolling back in her head and in a very slow motiony voice she goes “ohhhhhh noooooo mommmmmyyyyyyy”….. I really thought she was done for after that one. But we pull back into the ride unloading area and she was all giggles and huge smiles and asked if we could go again! Thereafter, that was a favorite ride of everyone! It was one of the few rides that we had almost zero wait for, everyone loved the thrill of it, and it was just short enough to not be super scary to anyone, but fast enough that it was actually a thrill!

After that I get confused on what all we attempted to do – but I know that at some point shortly thereafter we ended up in the line for Belle’s Enchanted Theater. The line was very long and was VERY slow to move. disney1-46 Like ridiculously slow. Like we hardly moved ever in an hour. At that point, a CM came out to tell us that the ride was shut down for a while due to technical difficulties. It is one of the newer rides and isn’t even really a ride – but it has a lot of animatronics apparently. anyways – the big girls were not real happy with me for “wasting so much time” and the reason we were there in the first place was because Kendall has recently discovered Beauty and the Beast and we wanted to show her Belle and the Beast. We managed to have a lot of fun in line though – this was where we came up with the challenge for Ben that if the girls’ picture could get 500 likes that he would put on Minnie Ears and actually smile for a picture in them!

disney1-66We ended up next at the Carousel, and then it was onward to “It’s a Small World”. Waiting in the long line for that, Kendall started to look very out of it and beyond exhausted. It was starting to lightly sprinkle rain outside, so the indoor rides were just getting PACKED. Kendall continued to go downhill in line for this ride, and we were making contingency plans for who would go back to the hotel with her/which girls would stay/if we would switch off later.  But we finally loaded into the ride, and within about 30 seconds of going through that tunnel on the “Happiest Cruise that ever sailed” – Kendall made a total 180. Her face just LIT UP at the sight of all those dancing “kids” as she called them. She could NOT sit still through the ride and was yelling at all of us – “yook at dat daddy! Poppa! See doze kids!!! ooooo mommy – what doze kids doing on da ceiling???” Once again – I was in awe of “Disney Magic” to get her to forget her disney1-73exhaustion and pain for a few calm minutes. It wasn’t a magical cure-all. But it was a definite change for the better, and I think part of the second wind she needed.

 

Peter Pan’s Flight was another completely packed ride that the girls wanted to attempt, but since I was still in the doghouse for the wasted time at Belle’s, we said we would try it. I am not sure exactly how but we were allowed to go into the exit of this ride and bypass a VERY long line (one CM had told us there wasn’t a GAC entrance, but another one quickly shuttled us over to the exit and plopped us into our flying boats!) I think this is probably one of my favorite pictures from the whole trip! It was pitch dark in the ride, and I rarely even shoot with a flash on – but I aimed the camera at us and took a picture hoping to get some of the blacklight effect captured. The look on Kendall’s face is pretty much priceless! She LOVED this ride – well actually they all did!

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Next (i think – i’m probably messing up the whole order of the day but oh well – you get the gist!) we were going to tour the Haunted Mansion. This was one of Kealey’s “must do” Disney things, and even though I wasn’t super sure how the little girls would react, we decided to risk it! After a slight foley bag mishap in the middle of line (unfortunately not our last one of the trip!), we made it in to the cool air conditioned ride. “Last to Load, Last to Leave” as we got used to hearing. (Guests in Wheelchairs have to stay to the back of the room so we go in last disney1-85 and are the last to leave the stretchy room.) We were ushered again to the exit of the ride and had to beat hoof in order to jump into the moving “coffin-y” things. Kendall was enthralled through the entire ride – Kaylen was slightly hesitant about it all, but everyone loved it!

In some kind of order we did Big Thunder Mountain Railroad (Kaylen declined to ride this one, but was BEGGING to go on it as soon as we came off of it!), got dive-bombed by seagulls going after someone’s Leg O Turkey, got cotton candy (one of the few splurges Ben was ALWAYS willing to go for!), and headed over to Pirates of the Caribbean (my favorite!) The line for this one was insanely long but moved along at a good clip. Since it was recently “renovated”, it did not have an actual GAC access line – and the CM’s were semi-confused about where to send us. This was really the only ride disney1-93 we encountered anything BUT extreme helpfulness, and even then, it wasn’t bad – just confusing and hard to follow in the midst of a VERY crowded ride! My girls LOVED this ride as much as I do. Ben and I were preparing them for the “big drop” in the middle of the ride – and we were all like “was that it?” to the little speed bump we went down. Apparently the original ride in DisneyLAND in California is a MUCH bigger (better & scarier) drop!!! But the re-done animatronics made to look like THE Captain Jack Sparrow are AWESOMESAUCE!!!

Kendall’s chair was waiting for us at the exit of the ride and I went to set her in it and it was SOAKING wet! I was like – did they send the chair through the ride??? When we rode the elevator upstairs we figured out why. It was POURING down rain. All the cute little prepared people had on their cute little plastic Mickey ponchos and we were all “We don’t need no stinkin’ PONCHOS!!!” (Ok we did, but I was not about to drop $8 on a piece of plastic in which to drape myself.) Everyone else had some kind of coverage so I just sucked it up and got drenched. Being cold and wet did not in ANY way dampen my desire for a Dole Whip Float. I don’t know exactly what they are – I just know I had heard a lot about them, had pinned a recipe for how to make one a few months back, and that it had pineapple juice in it. Sold. It was like eating heaven. It was like pineapply ice cream floating in fresh pineapple juice. A shot or two of Malibu coconut rum would have been THE PERFECT touch but apparently they don’t sell shots of alcohol at the Dole Whip stand.

We made our way over to Tomorrowland at this point (we had basically made one huge circle all day long). I think disney1-55 we had tried the car driving thingy (Raceway/speedway? I dont’ pay attention to ride names) earlier in the day. It did give us a glimpse into how high our insurance is going to skyrocket if/when Karissa is ever given a license…

We did pretty much every ride in Tomorrowland – the People Mover (Kaylen’s favorite ride!), Buzz Lightyear’s Laser Gun Shooter Ride (not the actual name) – where Ben became enthralled with trying to have the highest score EVER – Space Mountain and the best ride in the history of amusement park rides—> CAROUSEL OF PROGRESS. No I am not kidding. I seriously love love love that ride. I do not know why. I am a huge history buff, love all things “old timey” and kitschy and cheesy – and this ride is replete with all of that. It takes kitschy to a WHOLE notha level!!! Complete with ROCKING song: “It’s a great big beautiful tomorrow – shining at the end of every day – there’s a great big beautiful tomorrow, and tomorrow is just a dream away!!!” someday if I get bored disney1-112enough, me and kaylen will sing this on video for you all. You will love it.

Space Mountain. This was the big girls’ and Ben’s favorite ride of all (I think? Ben can correct me if i am wrong!). It is fast and dark and gives you whiplash and is just really really cool. At the entrance to this ride, we realized that Kaylen and Kendall weren’t tall enough to ride it – so we asked the CM if we could do a parent switch. The basic premise of this (or so I had heard/read) is that one parent takes the riding children on the ride, meets the party at the exit, and the other parent is basically allowed to swap places there at the exit. The CM told us this was absolutely allowed, and directed us where to go. We talked to the next CM about this plan and again, she said it was totally fine and took me and the babies to our waiting spot while the big girls and Ben rode. They got off the ride all giggles and huge smiles and we made our way back up to the appointed spot to wait. A NEW CM was waiting up there and proceeded to lecture me on the proper use of a GAC and basically accused me of lying because I couldn’t remember the name of the original CM who had told us this was ok. I spotted that original one out of the corner of my eye across the entire staging area and proceeded to yell and jump and get her attention to come over by us, where she opened the gate and pulled us right past the Whistle-Blowing CM! That ride was SO worth that minor hassle. disney1-111

Except that by this time, what had started as a handleable but annoying sinus headache had turned into a full  blown raging migraine, and the jostling of that ride on my neck was nearly enough to make me pass out from pain. We walked around and did a couple more rides and then realized we were going to have to SPRINT out of the park to beat the parade/firework crowd. As much as I had wanted to view both of these things – after completely packed days, they were just not a high priority with four exhausted starving children and two very tired parents! (The grandparents had smartly headed back to the hotel after the rain started coming down!) We made it back to the bus that was going to take us to the hotel, and Kendall was in her chair tilted back, still not having shut her eyes for more than a wink or two all day (which, for a kid who routinely takes a 3-4 hour nap DAILY when at home, was a HUGE feat!). She was laughing at a little girl behind her who was being silly one minute and in a matter of literal SECONDS had passed out from exhaustion. she did not move a muscle from that point on – including being wheeled into the hotel, undressed, hooked up to all her various tubes, and the rest of us eating dinner that Ben scavenged from the row of fast food behind our hotel. HE FOUND A CHICK-FIL-A!!!! This is why i love this man. He knows the way to my heart is through my stomach!

disney1-113 We basically had to manually move the girls’ jaws to chew their food for them because they were SO tired after such a long full day – but boy did they sleep good that night!

It was truly an amazing and magical and LONGGGGG day! We were at the park for almost 12 straight hours, and packed so many fun memories into that time!

More on Day 2 next time!

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(the album of pictures includes all of the pictures above. sorry for the duplicates!)

Dreams Do Come True.

In which I will try (and likely fall supremely short) to recapture all of the magic of our first day at Walt Disney disney1-1World. For the record (and the purists), I often interchange the terms – Disney/disneyworld/disneyland. I know that Disneyland is a whole separate thing across the country. So as i’m typing, if the wrong one slips off my fingers, forgive me! Also – I’m going to try to just do a chronological retelling of what happned in sort of diary fashion, and will do a separate post or two about my thoughts on certain aspects of doing Disney with a special needs/medically complex child. Otherwise this will turn into a BEYOND epic-length post! (but really, what else do you expect from me???)

Ok so i last left off with our first night in Florida at the hotel and we had eaten dinner at Downtown Disney.

Bright and early Monday morning, we woke up and rushed to get everyone dressed and upstairs to the breakfast at our hotel so we could catch the shuttle bus to the tram station. Mistake number 1: not paying enough attention to that stupid schedule the night before! I should have woken up at LEAST an hour earlier than I did because in our rush, I forgot to pack pretty much EVERYTHING Kendall needed. Extra fluids, her formula/bottles, her meds, sweatshirts and jackets for me and her (everyone else had theirs though!) – so much stuff. All the stuff I had so meticulously thought through when planning what she might need at a day at the park – I forgot it all. she has a bag on the back of her wheelchair that has “emergency” stuff in it, so we managed ok, but there were a few times when her real stuff would have come in handy!

anyways – the little girls were SO LOUD and SO EXCITED all throughout breakfast – it was hard to keep trying todisney1-2 shush them even though no one else in the breakfast room was really sharing their enthusiasm at 7:30 am. Finally we made it to the shuttle bus, got Kendall loaded up, and started the LONNNGGGG drive over to the tram station. I was shocked by how far away our hotel was from this place. But it did serve to emphasize the fact that once we were at the park, we were STAYING at the park. None of this back and forth stuff! We made it to the tram station, waited in a long line, got loaded into the handicap car of the tram, and started to make our way to the Magic Kingdom. After about a 5 minute ride, the castle came into view, and Kaylen’s little voice yelling “there it is! I see it! I see the castle! that’s disneyworld!!!” was so cute. I had tears in my eyes from that moment onward – just SO overwhelmed with gratitude that we had made it there, we were really doing this, and wanting my babies to all be in AWE of the true magic of the magic kingdom at the happiest place on earth!

We made it through the bag check/turnstiles with no problem (I didn’t think there would be, but again with all of kendall’s fluids and such, I wasn’t sure what to expect). Our first stop, as I was instructed by so many wonderful friends and blog readers, was at City Hall for a Guest Assistance Card. I had actually read a lot of stories/tips on the GAC, and knew that it wasn’t designed to be a “skip the line” card as many people think it is. What it does though is signify to the Cast Members at the front of every ride that you need to wait in line at an alternate entrance (usually the exit) because your child’s wheelchair (or a scooter or whatever mobility device you need) cannot fit through the tight curves or handle any stairs that are in the regular line. disney1-3 I know there are a lot of nuances to the GAC, and I will go more into detail about OUR experiences with the GAC in another post. But we stopped in there, got the card, got our “1st Visit” buttons, and waited in line right outside the door to meet Snow White. She is another one of Kendall’s favorite princesses, so again the tears started to flow as I saw her ease out of her chair and gingerly walk up to Snow White for a hug and to have her book signed. We got our first PhotoPass pics and card, and we were on our way.

In City Hall, the CM told me that the princesses were right across the street in the Storybook Theater, so off we headed to go get in line for that. The sign out front said there was a 25 minute wait, and we could have opted to get FastPasses for this, but I thought “you know what? THIS is the reason we are here. To have Kendall (and the other girls of course) have their most magical dreams come true. Meeting the princesses is IT.” so we waited in line. I was unsure how it went, but i knew that Rapunzel (Kealey’s princess), Sleeping Beauty/Aurora (Kaylen’s princess) and Cinderelladisney1-4 (duh) were all in the same location, so it had to be magical gold. Merida/Brave (Karissa’s princess) was in a whole other part of the park, but if we could hit 3 out of 4 in one fell swoop, all the better! Waiting in line was TORTURE for the girls! They were so excited to be AT disney finally, they wanted to see EVERYTHING all at once, not be standing in line! But we told them that a lot of Disney was waiting in lines, and we were able to look at maps and plan out where else we wanted to go after the Princesses, and talk about the autograph books and how they worked – and before we knew it, our 25 minutes had flown by and we were so close! Kendall started doing her crazy “i’m overwhelmed by too much input” flapping and tongue-flicking thing, and then her stupid bladder spasms kicked in in the middle of the line so it was interesting trying to get her laid back, hook up her catheter bag, calm her down in the middle of a busy line with lots of curious little eyes all around. I started to think maybe it would be too much for her, two whole days at Disney. I just wanted her to meet her princess Cinderella and have that magical moment.

disney1-5Doing her crazy hand-flapping/tongue flicking thing. SO overwhelmed by the hugeness of this moment and the WAITING…

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Feeling a little crappy but still able to give me a thumbs-up.

We entered the room where each princess had her own little meet and greet station. Rapunzel was first, Aurora disney1-7 next, and last was Cinderella. I was so blown away with how much time each princess took with our family. Granted, 4 kids is a lot. But they each talked to each girl, stayed so true to their character, signed the books, took photos for our own cameras then the PhotoPass photogs cameras, and gave hugs to each girl. I started to have tears in my eyes just a teeny bit for Rapunzel, a little more by Aurora, and when they started to break away from Aurora, and I pulled Kendall over to run over to Cinderella, i was pretty much done for.

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It was almost as if everyone in the room knew this was a magical moment. The other girls hung back, disney1-13 Kendall ran up to Cinderella, they hugged, and I lost it. Cinderella talked to Kendall about her dress, and her hair and her glass slippers, and Kendall was in HEAVEN. All the pain and overwhelming-ness was gone. It was just her and cinderella. The other girls came over then and joined in for the autographs and pictures, and we were about to go, I was fully crying by that point and the CM who was in charge of keeping the line moving through came over to give me a HUGE hug and just said, those are happy tears, you’re in a happy place! So I sobbed even harder, which made her start crying, my MIL start crying, and even Ben admitted to tearing up a little at that point. I told her that it had been a very long hard rough year for Kendall with a lot of medical issues, and we were celebrating that she made it – made it out alive, made it out in relatively good shape, made it to Disney, and made it to meet her princess, her dream come true. At hearing that, everyone in line around us started crying, and i was being handed kleenex from everyone around us. The big girls came over behind us then, and Cinderella sat down to take a few more special pictures with Kendall alone. You can see the huge grin on Kendall’s face. That moment right there – made the whole trip worth it. If we had left after just that – it would have been an awesome trip.

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I cannot capture the magic with words. I hope the pictures somewhat do it justice, but i am sure even they will fall short. This was the magical moment. The feeling in that room for those 15 minutes was palpable – you could reach out and grab hold of the magic in it. I hope Kendall remembers that moment for her whole life. Or at least remembers it by the pictures.

 

Not once did we feel rushed or hurried along in any way. Not by the princesses, not by the CM’s, not by the photographers. Not even by the people waiting in line behind us. Time really stood still for a few minutes there.

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As we were headed out the door, a lady who had been part of the kleenex crusade came up to me and said, can i give you a hug? I know I don’t know you but that was magical. I just wanted to tell you God bless you and your family!

IMG_5252 MAGIC OF DISNEY folks.

I can’t put it into words.

But I can feel it even now, if I close my eyes and think back to that moment of Kendall and her stilted little walk, backpack hiked on her shoulders, fancy Cinderella dress (actually her sister’s leftover ballet costume from two years ago) and light up glass slippers on – going to meet her hero, her idol, the girl who has kept her company through more pain and sickness than any 1 person should have to endure. Magical. Breathtaking. Amazing.

 

 

 

I want to leave you with this feeling, so i’ll continue on in Part 2 of Day 1.

We Made It!

IMG_5219 Writing to you from the comfort of a foldout bed in a hotel room with a view of the most magical place on earth! Two days, two routes (one car/one plane), and a whole lot of luggage later – we are together as a family again, ready to walk into the Magic Kingdom as soon as those gates open in the morning tomorrow!

I have no idea what I’m doing from a “planning” standpoint, but all the MUST DO’s are circled on a map, we have a general direction to head once we enter the park, and we have oodles of excitement here from four girls which i am sure will spur us all onward!

IMG_5208 To recap today a bit –

Getting through TSA was really my biggest “worry” about travelling with Kendall (I mean besides the fact that she requires a whole lotta stuff to keep her care managed and her health optimal and leaving the comfort of all our nicely stocked supplies behind is a bit scary). I mean, i’ve had TSA agents throw away my GOOD BEST LIP GLOSS because they felt it was over the fluid limit or might in some way detonate. LIP GLOSS. And i was gonna trek a kid through their little metal gates with about a thousand fluid ounces of open fluids, another thousand of closed fluids, and hundreds of little bottles or other devices that could be construed as “dangerous” (needles/syringes, hemostats, medical scissors, etc.) Not to mention the oxygen concentrator, IMG_5209 the wheelchair, and our “personal item” carryons. All we needed was a partridge in a pear tree. I was literally shaking as we walked down the hallway towards the TSA checkpoint. That could have been the Starbucks Double Shot though…

So we get down there and it’s us and about 93 other elderly passengers, so of course we stick out like a sore thumb. (Not to mention Kendall is screaming “Mommy!!! There’s BRAVE!!!” about a lady in the next line who had red curly hair.) They quickly took notice of the fact that we werent going to be a “simple” case, and started setting us up our own X-ray line. A few people thought they were gonna be slick and get in our line, and quickly realized that was a horrible rookie mistake. They had to call 2 supervisors down to ensure that we were processed correctly. And we were. They were quite respectful of all of Kendall’s “attachments”, and at one point we had IMG_5216 about 5 officers helping us with various things (they had to scan everything through the machine, do patdowns to kendall, swipe the bags and anything containing fluids and check the swipe pads in the machine) – and they had to put Minnie through the X-ray machine. Holy Hannah – you would have thought they were performing surgery on Kendall herself with no anesthesia from the reaction to Minnie needing an X-ray! And in Kendall’s world, X-rays are a very real experience associated with usually not so good feelings (she gets stretched into position for CXR’s, gets her gj-tube changed out under a “live” x-ray with no sedation/meds, gets CT scans and ultrasounds in the “x-ray room” at our hospital, etc). one of the supervisors yelled out “someone hurry minnie through that machine NOW!” It was pretty funny!

and then my heart stopped when the supervisor comes up to me and says “ok we have a problem. I have a bottle that is over the 2 oz limit, and i’m not sure it is medically necessary….” And proceeds to hold up a bottle of BUBBLES. Yes the kind you blow. I have no idea how or why it was even in her bag (probably leftover from some procedure where they used bubbles as a distraction). I said – please just toss it! we’ll live without the bubbles!

And that was that! your prayers (and mine!) were answered as we breezed through (in just a shade under 30 minutes) security! We got Kendall all hooked up again and headed down to our gate where we were allowed to pre-board. This was a very good thing because i had to take about 3 trips to get all of her bags settled, unhook her from the chair, get her in her seat and hook her back up to everything. She wore her oxygen like a big girl during the entire flight even though she claimed she “couldn’t talk with it on”. (I think the passengers around us would beg to differ with that thought…) She was SO excited for take off – we patted our legs for more power just like in Little Einsteins! We painted with Color Wonder paints (magical!!! She is obsessed with painting and this was such an easy way to not get paint everywhere!), watched movies on the ipad, and then it was time to land. It was HOT when we got to florida (in stark contrast to the 10 degrees it was when we left home!)

We got to the hotel, got mauled by the big girls, opened up the NICEST gifts from some disney1-29 new friends who wanted to make sure the girls ALL had a magical start to their magical vacation, and started unloading all of the medical stuff. I wish I had gotten a picture of the gifts before the girls started tearing into it all, because i won’t do it justice with words. But a group of really amazing people sent some really amazing stuff here to the hotel for us. The girls all got new Minnie Pajamas, some perfectly princessed t-shirts, lanyards with trading pins!, and autograph books for the big character meetings we are hoping to have tomorrow! They were in awe of everything! Kendall fixated on a Beauty and the Beast pin that had a spinning head (hoping she doesn’t break it!), and the big girls dove right in to picking out their favorites. (I’m not totally up to speed on this pin trading thing so please feel free to leave me a comment with the best way to do it, or what else we need to do with them!)

disney1-4 Our hotel is right across the street from Downtown Disney, so we ran over there for a quick dinner. Well, we thought we were “running” on the shuttle bus, but it ended up being a 20 minute ride for what turns out was a five minute walk. But on the shuttle bus, I got to experience my first bit of Disney Magic.  We were pushing Kendall in her chair, and Ben was just going to deadlift the whole shebang onto the top step, but the bus driver said – let me pull up and i’ll help you out. And the bottom step moves forward and turns into a lift – just like how she gets on her bus every day she goes to school! It was so awesome to see. I know its a little thing – but to me it just showed how magical this place can be for ALL kids, of any shape or size or specialness. disney1-5

 

 

The girls are SO excited to be here – they wanted to stay at Downtown Disney for a couple more hours – but you can just tell they are EXHAUSTED, Kendall especially. We went into a couple shops, and my eyes welled up with tears. It really is a dream come true for them – all the princess stuff, the dresses, the dolls, the magical sparkly things everywhere….oh i want to buy them the store! I can just see it through their eyes and it is awesome.

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I can hardly wait for tomorrow.

I can hardly keep my eyes open right now.

but i wanted to get this all out, while it was still all so fresh in my mind. Tomorrow it will fill up with new memories and things to hold on to. I read every single comment on every single post on the Hope for Kendall page, or on pictures or posts on my own wall on facebook. Every single tweet mention. You all have some very wise words. And the one thing i keep seeing you all say is “make memories”. That’s what we are doing. I’m trying to capture memories while still living them. I hope I can be good at it. I hope my heart can hold it all. I hope my waterproof mascara is really waterproof because tomorrow when my baby girl meets Cinderella, it will be a real live dream come true. And I will not be able to hold back the tears. They are falling already, even at just the thought of it.

disney1-23 I noticed today that we get a lot of stares. I guess a kid in a wheelchair is kind of an uncommon sight. And i realized that very few of them were actually rude (in fact i wouldn’t say ANY were outright rude, people are just curious. Perhaps grossed out by the bags of body fluids that I had nowhere to really hide today nor did i have the time to really care!) But all around me I could hear people saying “oh my gosh she’s so cute!” I’m gonna choose to believe that people stare because she’s cute. This has nothing to do with anything other than its just a random observation from today. I just wanted to get it out.

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I hope you enjoy some of the pics! I am not sure if i will have the strength to post a whole post tomorrow – but you better believe there will be at least one pic of the magical meeting.

 

disney1-32Check out Ben’s awesome invention – the traveling o2 holder-turned-IV pole! it is holding her TPN, the pump, and her foley bag!

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Please pray for all my babies, that their sleep is sound and somehow has double the sleeping power so they are all just little energizer bunnies tomorrow. Kendall especially is overly exhausted but refuses to stop. She is the original energizer bunny! She is completely unsafe out of her chair for more than a few minutes or very short disney1-14 distances – and she has a huge goose-egg bump on her head to prove it. she is fighting through nausea that I can’t pinpoint the cause of , her usual autonomic issues being thrown off by exhaustion and the extreme temp swings, and her typical bladder issues.

tomorrow is gonna be a magical day – so i better go get my beauty rest so I can enjoy every minute of it!

Bibbidi Bobbidi Booooo!!!

 

terra.

DisneyWorld or Bust!

In just a shade more than 6 hours, the Atkinson-mobile will roll out headed towards all points south! It is fully loaded with all of our luggage, the portable mobile version of Atkinson General hospital loaded into the back of the Denali, “entertain me” bags for the three big kids stowed by their seats. i wish i was the kind of organized mom who had made up cutesy little personalized color-coded bags with wrapped gifts for the girls on their way down there…Yeah now i’m feeling more guilty.
Ok no time for that!

What we DO have is a boatload of excitement! It was a little tense this afternoon as I went to finalize the girls’ bags that they packed the day after Christmas (they were a teensy bit overzealously excited!), and realized that they had pretty much NOTHING in their bags that was usable. For instance, Kaylen had 14 long sleeve shirts, and 1 pair of pants that matched exactly none of them. Plus two pairs of mittens. And a swimsuit that was too big for Karissa so she graciously passed it on to Kaylen. (For the uninitiated, this would not work. Karissa is a very skinny size 7, and Kaylen is a short but stocky size 5. It was interesting to say the least…) So i had to spend a whirlwind hour re-packing all three big girls (because by this time Ben was home and wanted to pack up the car). Got them all packed, finalized my and Kendall’s suitcase (I couldn’t find her Cinderella dress and holy crap I just realized I don’t have her glass slippers either!!!)

Luckily I had spent a couple hours yesterday getting Kendall’s meds all sorted and bagged up, making sure her “go-bag” (it’s like a diaper bag on crack – has all of her emergency/needed supplies for all of her tubies and attachments) was up to date, updating the paperwork for the travelling chart, etc. I “think” think think everything is set up and ready to go. At least as much as it can be. I am nervous for half my family to be driving without me (not that Ben can’t do it all masterfully – i just hate when we are split up!) I am nervous for getting Kendall and her redonk amount of meds and fluids and STUFF to be screened through TSA. i am nervous for her health. We found out that her blood counts had taken a nosedive in three days (between admit day on sunday and regular lab day on Wednesday.) She is hovering barely above the level she needed transfused at a couple years back, and her body’s stores to make more H&H (hemoglobin/hematocrit) are abysmally low. Overall, she is holding her own against these low values and I am really hoping that between our amazing prayer warriors, our amazing God who hears them all, and a little Disney magic thrown in for good measure, that all of this will be nothing more than the nervous worryings of an over-thinking momma.

Even right now, as I type this in preparation for packing up my laptop to take the trip with Ben in the car, i can hear her upstairs whimpering in pain, coughing up a lung like she’s been doing for a couple weeks now. She will be ok, because she always IS ok. But it hurts my heart a little bit, if i’m completely honest. I just want her to have the trip of her dreams, meeting her princesses, seeing the castle, experiencing the magic of the Happiest Place on Earth.

It’s gonna be awesome. no matter what  – it’s going to be an awesome trip. Because we will all be together, and making memories, and laughing and smiling and in general being crazy. I can hardly wait!

I have a busy full day tomorrow. Running a few last minute errands to get the rest of her medical equipment in place, packing up our airplane bags, finishing up the laundry and cleaning the house so we don’t come back to the chaos it is currently in after a very crazy afternoon. Meeting with a good friend to go over our plan of attack for seeing as much as we can in the two days we are at the park. Just breathing.

I hope I can actually sleep tonight. I’m SO excited for my babies, for all of us! I know some of you are just about as excited as we are – and I can’t tell you how much that means to us! To have so many of you rooting for us and with us! We will do our best to keep things updated – either on the blog here or on one of the Facebook pages that are over to the top left (Terra Talking the Blog page or Hope For Kendall page). Prepare to be buried in bajillions of pictures!

Ok i better go try to figure out something for littlest miss, make sure all the snacks are ready for the car, see if i can get some sleep before waking up at 4 to help get the big girls loaded up in the car!

Thank you so much to everyone who has been a part of helping us get where we are going! Your love, prayers and support mean so much!

Til next time – where i’ll be coming to you live from Orlando! –

 

T-crest.

(Photo credits to Google Images/respective copyright owners)

Merry ChristmaNewDisentines

So…..

It’s been a grip of time since I’ve updated so why not cram a few weeks/holiday updates into one, shall we?

IMG_5163 (Hence the title: Christmas, New Years, Disney and because it’s going to take me a few days to get this one written, we may as well throw Valentine’s in there too!)

I will not be able to do Christmas justice this far after the fact.

It was a good Christmas. (I’m saying that in my best “wind in his hair” accent. Except it’s not from Dances with Wolves, its the old Indian dude Staab from Legends of the Fall. This is why i shouldn’t blog after a bowl of Cherry Berry. Only my husband will understand what i am saying and he will do his little smirk which is about as much emotion as he shows, even though he does think I am hilarious. most of the time.)

ANYWAYS….

where was I?

Christmas. Good. See, I knew ahead of time that their big gift was going to be our family trip to Disney, so it made me very reluctant to get a lot of “real” (wrappable) presents. (Well, that plus a distinct lack of fundage to buy tons of presents. Splitting hairs.) BUT – I wanted to get them stuff FOR the trip as part of their gifts, except that their Christmas wish lists didn’t include “new underwear” and “car trip boredom busters”. It’s not a super huge deal, but I wanted them to get at least one of their Santa list gifts, even though I knew that a trip to Disney (and a whole extra week off school) was plenty gift in and of itself. We were extremely blessed by an agency that we work with for Kendall’s nursing as well as some amazingly generous friends who both helped ensure that some of the financial burden of providing a good Christmas was relieved. Ben has done an amazing job of utilizing some of his travel points to provide the hotel room for our two nights at Disney, a flight for Kendall and I, and we have been saving our pennies up to pay for the gas for the rest of the family to drive down to Florida. Christmas would not have been as Christmasy if it were not for our Christmas angels. Thank you is so inadequate – to all of you who have helped our family out on our journey over the past couple years. You all know who you are. I would fall short if i even tried to begin listing you out by name. I pray that God blesses all of you in the way you have blessed us. Anyways – Christmas rocked.

We were all so excited that we got to share Christmas with “sissy Christine” – a beautiful young lady that Ben and I first met when we lived in Washington and worked at our church in the Awana program. It is hard to believe that she has been like a daughter to us for almost 12 years now! And now she’s a momma herself! She and Baby Sophia came to spend a few weeks with us, and we had so much fun getting ready for the holidays with her! She is getting ready to leave and it is making me sad! It has been an adjustment having a 4 month old baby in the house again – but oh so fun! We are going to miss them so much!

And then Kendall had to go and get stuck in the hospital on December 30 (she had spiked a lowish gradeIMG_5191 fever that i would have likely let go, except we leave for disney in a week and i couldn’t risk that she would pull the stunt she pulled last time she had a lowish fever and needed an ambulance ride within a few hours!) So we trekked up to milwaukee, had a nice little 24 hour long visit (they wanted it to be much longer, but a. i needed to get home to pack and be with my family, and b. you DO NOT want to start the year out by owing your entire out of pocket copay in the first few days!) She’s getting tanked up on IV antibiotics and IV antifungals so we can hopefully “optimize her health” for her quality of life on the trip. In english, this means that we are treating a UTI that we normally would choose to not treat so that her typical UTI symptoms including bad pain, increased spasms, lethargy and nausea will be held at bay so she can enjoy next week’s magic to the fullest of her abilities!

So now we pack and prepare and hope we have everything we need for Atkinson General Hospital to hit the road!

A little bit about our plans:

Ben and the big three girls will all leave early Saturday morning to start driving to Florida. They will have most of Kendall’s medical equipment/supplies, all of our luggage, etc. Then on Sunday morning, Kendall and I will head to the airport to hopefully navigate the TSA nightmare with all of her fluids/pumps/medications that we will need for the day. Trying to pare this down to the bare minimum while making responsible decisions about any “emergencies” that may or may not arise has been a challenge. I think we have the letters of medical necessity/medical care plans/other paperwork all set, her emergency supplies, her daily supplies, her crayons/playdoh/minnie doll/glass slippers…

Ben will stop in Atlanta on Saturday night (because he likes to make it a direct straight 24 hour drive but his dad told him he BETTER stop and take two days to drive down or he would not be buying Disney tickets! Thank you Poppa Bob!!) and then meeting Kendall and I at the Orlando airport to pick us up on sunday afternoon. We will be staying at an off-site Hilton property that “has a view” of Disney’s Magic Kingdom on Sunday, Monday and Tuesday nights – going to the park on Monday and Tuesday. We debated about which parks to try to hit – but in the end decided that for our first trip, and not knowing how Kendall will do with the “overload” of it all, that we would probably get the most bang for our buck by hitting Magic Kingdom for  both days. I mean, Pirates is there, and that’s really all that matters, right? 😉

Just kidding. I honestly don’t even think the girls know there are actual RIDES there besides the teacups (because they see those in the disney commercials). I think they will all get enough enjoyment out of the activities at MK, and for Kendall, she just really really really wants to meet the Princesses. And Minnie. And Mickey. And Goofy. And Daisy. And….And…And… The parades with the characters will hopefully satisfy the “meeting everybody” requirement. I know they are going to love the trip no matter WHAt happens or who we meet or what rides we manage to make it on. They have no expectations so they will be easy to meet/exceed. It will be magical and awesome and I feel like I want to take nonstop videos and pictures to try to capture the absolute wonderment of it all in their eyes. i hope to be able to do it justice in the retelling.  I’ll likely be putting most of it on the Terra Talking FB page and tweeting a lot of little moments. (My tweeter is up on the side on the left if you aren’t on twitter regularly.)

On Wednesday morning we will be driving a few hours south back down to Ft. Myers to spend a couple days with Ben’s family enjoying the pool and beaches, and then Kendall and I fly back home on Friday, with the rest of the family following behind in the car. It was a rather impromptu trip, but will be oh so welcomed! The girls are very happy to be missing a whole extra week of school, and I am so glad that it is for a GOOD reason! They deserve the magic of this trip just as much as Kendall does for all she endures and has fought through the past couple months especially.

So now to finish the last minute packing, making sure all the stuff to fly with kendall’s stuff is in order, putting batteries in cameras, gathering up crayons and markers for the car trip. In the words of a character from my favorite book/movie (the Shawshank Redemption) “I find I’m so excited I can hardly hold a thought in my head. I hope the Pacific Ocean is as blue as it has been in my dreams  (that Disney is as magical as it is in my dreams). I hope…. I hope.”

Thank you to everyone who is or has been a part of us being able to mobilize and move out, getting TO Disney, helping with suggestions or advice on how to fully take advantage of our two days, EVERYTHING. Thank you Thank you Thank you to so many people.

I better get off of here for now and go actually finish packing or it will never get done!

I’m sure I’ll blog one more time at least before we go. So much I want to say and not enough time to sit and type it all out!

Have a super sparkly day everybody!

 

Terra

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