Patrick Hoopes

Church is hard. It’s long and boring and you have to stay on a pew with your family and try to be quiet. Patrick likes to stand on the bench and play with all the people who sit behind us.

The first week of July, he lost his balance doing this. Came down on the corner of the bench in front.

He landed and held his breath and I knew a scream was coming, so I grabbed him quick and hurried out of the meeting as quickly as I could. A woman visiting our meeting stood and tried to follow me with this horrified look on her face.

I didn’t understand why until I got to the foyer.

Thank goodness other friends followed and went back to get Brian, who had no idea what had happened.

We applied pressure and bleeding stopped, but it was pretty clear he’d need stitches.

We debated where to go, but decided that if he had a concussion and needed to be admitted, he’d be most comfortable at the children’s hospital.

He was very happy that they used pink coflex to hold a gauze of lidocaine on the wound.

When his head was good and numb, a very green seeming resident, with supervision from a familiar ER doctor, irrigated the wound. Then they put in five staples. They just stapled hair right in.

Staples are preferred over stitches for children’s head wounds because they are easier to put in and take out. (Stitches would require sedation.) He has a cool scar that will show up if he ever shaves his head.

Patrick didn’t like the staples. He called them “pretties,” confusing them with the bobby pins his aunt sometimes puts in his hair. They were uncomfortable to lay on so we had to change all his diapers standing up for a week. He couldn’t immerse his head in water, but was supposed to wash it often. Every day I cleaned it with peroxide and put an antibiotic on it. He didn’t like that. They made it hard to sleep, too. He asked me several times a day to take the “pretties off.”

But they only had to stay in for 6 days. We took him back to the hospital and it took about 2 minutes for a nurse to remove them with a one-pronged staple remover.

I’m amazed this is the first ER visit he’s ever had for an injury. I have a feeling that, for this active boy, it will not be his last.

Hopefully, it’s the last injury in sacrament meeting, though.

There is nothing like the guilt of eating a molten chocolate lava cake in front of a kid who is allergic to the dairy in the ice cream, the eggs in the cake, and forbidden sugar.

A while ago, we started cheating. We started letting him taste the chocolate syrup on the plate.

When summer started to include ice cream parties, we expanded the spoiling. First, it was a drop of chocolate syrup on a spoon. Then a line. Then a bowl drizzled with it. This is his preferred dessert.

In a 19 food allergy panel, the only food Patrick tested completely negative for was chocolate.

We’ve all gotta splurge sometimes, right?

(In Patrick speak, “chocolate” is pronounced “daw-daw”)

Patrick went back to school this week! We’re both excited, but especially him. He has been all smiles since he understood what was coming.

Of course, there are a lot of logistics involved. Doctor’s orders. Emergency plans. Medical supply kits. New care notebooks. All to give us some added piece of mind.

All in all, it was a good back to school experience. The only kink in plans was when the teacher called me a week before the first day of school to say that, instead of coming Tuesday Thursday, they wanted him there Monday Wednesday. This would give him the opportunity for more one on one time with the physical and occupational therapists and a chance to play in the “motor room” which apparently has a padded floor and things to climb all over the walls. I set up our appointments around the other schedule, so we had some stressed afternoons getting to appointments on time.. But it worked out, I think.

Last week I went to the parent orientation meeting. I walked in and Patrick’s teacher, who just noticed I mentioned speaking spanish last year, asked me to translate the meeting. So, we met the classroom staff, talked about rules, and I mumbled a translation the entire time to another parent there. She asked me if I’d like to be her translator this year. I’d love the excuse to help out at the school, but I’ll admit, the idea of translating another kid’s IEP meeting is a tad bit intimidating.

The next Monday was Labor Day, so no school. And then Tuesday, they had a classroom open house. Patrick was SO excited! I let him pick out his clothes. (He chose a hockey jersey, just to make Daddy proud). And then we headed out to the school. He was so excited walking through his school halls, I thought he’d burst!

I was incredibly proud that he walked in and immediately picked his name from the board to check in. Then he got to show me around the class. While we toured, I got a chance to talk to the new speech therapist. I’m excited because she is coming from the school for the deaf and blind and is, therefore, fluent in sign. In other words, she’s seen kids learn to sign and therefore knows what immature signs like Patrick’s look like. She might understand him!

He showed off for her, signing and saying his ABC’s up to F. (This is a new trick he’s very proud of… he then jumps to O, and finished the alphabet with a few omitted letters.) She was quite impressed.

I told her he has apraxia and, like the last school therapist, she was doubtful. But instead of brushing me off, she asked where I’d gotten the diagnosis. When I told her I’d had it confirmed by 2 private therapists and his neurologist, she said “Oh! Well, then how can we help him?” I explained what has and has not worked and how much we’d like to see him continue to use signs and pictures in addition to words and she was completely on board. Patrick’s teacher made a good effort to sign in circle time for him, too, which impressed me.

I’ve been really worried about Patrick’s signs not being understood in class and very worried about speech therapy at school undoing the progress we’ve made in private therapy over the summer by not addressing apraxia, so this was a huge relief for me.

Last in the open house was a circle time. The kids gather in chairs to sign songs, do activities, and learn. Patrick was SO good! He didn’t bother the other kids. He was completely interested in the teacher and only got up because he wanted another turn. (At least a dozen times in 5 minutes.) He correctly identified all the colors and matched pictures.

One classroom aide leaned over and commented to me that his understanding and participation had grown by leaps and bounds over the summer.

And then, we went home. Snuck in a nap. Went to occupational therapy. And terrorized the house till daddy came home.

His first day of class was the next day. You’ve never seen a kid so excited! Again he picked his clothes. Got his meds. And then was ready too early and stir crazy till I said we could go.

They changed the drop off for school. Instead of meeting with the other preschoolers which was a lot of walking, we meet where the busses drop off the other kids headed to the medical wing. It’s nice to not walk so far, but was very, very busy.

Patrick couldn’t take his eyes off the busses. (Therefore, I don’t have a single picture of him looking at the camera when I dropped him off.)

But he was happy and at ease as soon as we met the same classroom aide at the door. I left him with her and he happily went off to class.

I came home and attempted what I hope will become a new tradition. I went for a jog.. well, ok, a walk with a few minutes of running mixed in. But it hurt like a jog.

3 hours went fast this time. Perhaps cuz I worse myself out. Or because there is so much I wanted to get done.

I was thrilled to find one of my favorite moms from last year picking up her son from kindergarten at the same door. Patrick was less impressed by that, though. They told me he’d had a great day, completely at ease and happy to be there.

He napped more easily than he has for months.

Yup, we’re happy Patrick’s back in school and can’t wait to see what he learns. I’m also so happy for him to be back with friends.

 

Patrick can reach the fridge and get water all by himself.  He finds and fills glasses several times a day… except when he misses and leaves a puddle on the floor.

When he is successful, he drinks the water… except when he pours it on the floor… or on himself…or on me.

So if the floor is wet or my socks are wet or his clothes are wet, nothing is broken or leaking.  He just got a drink. He was “tee-tee” (thirsty).

Patrick has informed me that he can do this because he is smart.

I’ve been receiving e-mails and comments from those of you who live far away wondering if we are ok and why my blog has been silent these past few months. I appreciate your caring and concern and want you to know that it isn’t because I’ve forgotten that there are so many of you out there who love and care for us and Patrick. It’s just that, well, when times are turbulent, I’ve learned it is best to reduce speed and limit distractions. In this case, I decided (unintentionally) that the only way I could make it through this summer was to do a little less. And, in this case, it meant going radio silent.

Last you heard from us, we were coming home from Disneyland. (I still owe a post about our last day.) Well.. we came home just on time for the 4th of July, complete with fireworks and ice cream hosted at our house. And then, just as I finished unpacking and getting settled at home from our trip, Brian flew to Iowa for a business trip.

When he got home, he informed me that while he’d been out of town, his team had decided that in order to meet a deadline, they’d need to work some extra hours. That week, he had a few late nights, but we seemed to make it through ok.. tired, but ok.

But the next week, he had a conference in Portland. This time for a week. And, when he got home, his team had upped their game on the late hours.

His first day back to work, Brian didn’t come home until after 10 P.M. He worked no less than 16 hours a day for the next month.

Meanwhile, Patrick and I were making the best of things at home. By July, it was sinking in to Patrick that he really wasn’t going to be going back to school for a while. Summers are hard for a lot of moms, I know, and I feel a bit cliche saying that having my son home from school made for a tired mommy.

For us, it was a bit more than that, though. First of all, since Patrick was 9 months old, he has had either a therapist (or 2 or 3) coming into our home to help him or has gone to school where he was surrounded by therapists. In other words, Patrick has never, in his memory, had to rely on mommy alone to meet his needs.

And, because of a life full of hospital stays and high level medical care, as well as the effects of his brain injury, Patrick’s needs are greater than most kids.

Have I explained the term Sensory Processing Disorder before? Patrick is a sensory seeker. That means that when he is tired, when he is stressed, when he is overwhelmed, or when he is just plain bored… he needs movement. A LOT of movement. If this sounds foreign, think for a minute. When you’re sitting in a long lecture, what do you do? Do you chew on a pencil? Do you rock back in your chair? Do your twirl your hair? When you’re stressed do you go for a run? Clean the house? Grab a crunchy snack? Drum your fingers or tap your toes? Those are all examples of ways that you use your sensory system to calm or to focus yourself.

For Patrick, however, calming comes in the form of jumping on the bed, running down the street, pushing or pulling a heavy load, or shaking the furniture so hard I think it will break.

And, because he is young and his sensory needs are so great, he isn’t really good at calming himself. If I don’t help him, he just gets more and more worked up until he is hitting, screaming, yelling, throwing… all in an attempt to get my attention and get my help to calm himself down.

And so, here we were… No occupational therapist (the experts who specialize in helping kids cope with sensory processing) at all… no school… no play groups… just him and mommy and a world who doesn’t understand why he can’t hold still. And no daddy at night to help break things up.

And, on top of that, very fragile tubes connected to his heart that were at risk each and every time he felt out of control.

I quickly learned that the only way we’d make it through our day was if I set aside times two or three times a day to go to the playground or to play in the pool or to walk around the neighborhood.

Inbetween those times, I was trying to keep my house together. (A toddler at home can make a big mess. A toddler who is a sensory seeker can destroy a house in under an hour.) I was trying to keep up with family and church commitments. I was trying to meet all of his medical needs. (Remember that he still takes at least half a dozen medications morning and night, requires special diapering several times a day, needs replacement fluids run, needs TPN prepared. Once a week I have to order, meet a shipment of, sort and put away 2 coolers of IV bags and a case of medical supplies. And on, and on.) He developed a deficiency of a nutrient that is on backorder in IV form and the oral form made him so sick he’d vomit every day. The pharmacy changed brands of another of his medications and that tasted so bad he’d often throw it up. And so laundry went up and the floor needed mopped at least once a week. And have I mentioned how much this little boy resents the time mommy needs to cook and eat food that he doesn’t care about? Especially when we’re the only ones home at mealtime. Or how much he hates when your attention is on a computer screen instead of him and how good he is getting at typing or stealing the mouse or resting his chin in the pressure point on your arms o you can’t move your fingers without pain and HAVE to stop and do what he’s asking for?

My days start as soon as the sun rises, somewhere between 6 & 7:30 a.m. and end somewhere around 11 p.m. when the last of his IV fluids are finally hung. Thankfully, he most often sleeps through the night because if he wakes, thanks to his sensory needs, it takes hours to fall asleep again.

There were so many days I’d just sit down during nap time exhausted, look around my perpetually messy house and just wish I could do something to make it better.. But then decide I’d better sleep, or I’d never have the energy to keep up with Patrick when he woke.

And so many days I just wanted to scream to the people who, well-meaningly, would expect me to keep up with the same things I’d always been able to do before. I wished I dared say that if their dishes were done or their laundry was folded or their beds were made or their bathrooms were clean or their weeds were pulled…if they’d read a book, been to the gym, written a letter… or even if they’d done something so simple as showering two days in a row.. that they were probably doing better than me.

But this life is hard to wrap your mind around unless you’re living in it. I’m not unhappy. (Though my anxiety does rear it’s head from time to time.) I’m just doing the best I can. I love my son and enjoy our time together. But there are just a lot of things I can’t keep up with if I’m keeping up with him.

The times I’ve vented to friends about how overwhelmed I am, the reply is often “well, that’s life with a toddler.” And inside I sigh, because I know that it’s a little more than that. But I also know someday I’ll miss these days, too.

Brian’s bosses finally figured out that 16 hour days weren’t good for employee morale or families, either and he’s gone back to a normal work schedule. Patrick started school and I’ve been granted a beautiful 6 hours a week to work and exercise and think and clean without wondering if Patrick is safe or into something… or, worst of all, really standing just behind me stuffing things into my pockets so when I turn to walk, I’ll step right on him and he’ll fall down and cry.

Wednesday was Patrick’s first day of school. He was so tired when he got home, that he fell asleep for his nap without the usual 15 to 30 minute wrestling match that is usually required to help him settle down his mind and body. When he woke up, he was excited and off the walls a little bit, but he knew what to ask for. He asked to play in the basement where he could jump on the beanbag chair and watch signing time until he felt calm again. I folded laundry while he did this, and then when we were both done, he climbed up on the futon next to me and snuggled down with his arms around me and we watched TV together. For half an hour.

I think it’s the first time he’s held still in months.

So, it’s about time I come off radio silent.

It’s been a busy summer and I’m going to do my best to catch you up on all the amazing things that happened with short little posts full of pictures, fun stories and smiles.

If I owe you a personal e-mail, I’m going to do my best to get to those, too, as soon as I can. I’m still trying to catch up on the house and yard and a million other things. But you are in my mind and heart and I will write as soon as time permits.

Thank you for your patience, interest, help and love.

By Saturday morning, Patrick had figured out this Disneyland thing. He woke up at a bright and early 7 a.m. It wasn’t long before he had climbed up in his stroller and was signing “playground.” Thankfully, we were much more efficient at getting out the door, too, so he didn’t have to wait long.

We stopped in the World of Disney store for some souvenirs on the way in. (My head was pretty sunburned by then and I needed a hat before spending another day in the park.) I’ll admit, I’m not efficient at shopping and we ended up staying there much longer than planned.

But soon we found ourselves in Disneyland again. And it was magic from the moment we stepped in.

First, we spotted Goofy, Pluto & Mickey Mouse signing autographs. Patrick was mesmerized. Goofy tried to show him the camera.

Then Daddy tried, too…

And when I said that Patrick couldn’t be expected to look at the camera when meeting Goofy. So, Goofy helped…

Of course, this experience has led to Patrick telling quite the stories about Goofy and Mickey hitting him when he met them.

They did not. In fact, Mickey was just leaving when we made it to his line, so we got to meet him and take a picture, but it was really quick.

So of course, Patrick isn’t looking at the camera.

By this point, we were hungry. So we stopped at a bakery on Main Street. I accidentally proved the quality of Disney’s special diets program again here. I ordered a carrot cake muffin and thought I’d just check to make sure that it did have eggs in it. But when I asked, the cashier decided to make sure. The next thing I knew, the baker had come to discuss allergy safe options for me. I felt bad for causing so much trouble, as Patrick was more than content to eat one bite of a banana from a fruit stand next door.

Then, he got distracted. See, only as we finished ordering breakfast did I notice the Mary Poppins theme of the bakery we were in. We stepped outside and sat down only to look up and see Mary Poppins herself.

Things were quiet, so she wandered over to greet our table. Patrick could tell we were excited to meet her and wanted to impress her. But, not knowing what to do, he picked up his napkin, wadded it up, and then threw it as hard as he could. (Feats of strength!) Well, this was Mary Poppins after all. So of course she reminded Patrick that we don’t throw our food and need to have good manners.

With breakfast over, we decided it was time for rides.

We wandered through Storybook Land and stopped for some traditional pictures with the Disneyland Castle and the Sword in the Stone.

But then we decided to start at the farthest point and work our way back. So we went to Toontown instead.

Toontown is home of Gadget’s rollercoaster. Patrick is tall enough this ride by just a couple of inches. And he LOVED it!! He started laughing at the top of the first hill and laughed all the way through.

Unfortunately, that ride was the end of his energy. Toontown also provided the only real chance for him to get out of his stroller and run. But it looked more like tired stumbling instead. Still, Donald’s boat and Goofy’s House and some ride-in cars were worth the stumbling. And one more ride on the roller-coaster perked him up a little. But if these pictures seem a bit grumpy, you now know why.

All that tiredness didn’t deter him when we asked if he wanted to drive a car one more time.

And it’s a good thing we did, too. The ride had a problem and was evacuted right after we got off. Of course, the way Patrick drives, we wonder if he was somehow responsible for the needed evacuation.

The evacuation was a mixed blessing. Our plan was to take the monorail back out of the park. But it wasn’t allowed to move till Autopia was clear. The fun part was that they let us have a private compartment on the train, and that was a nice place to sit and rest.

We finally moved and made it out of the park. We’d seen a restaurant that looked a lot like the old Mayan restaurant in our home town.. a rainforest decor with a waterfall inside. And we decided to splurge on this for lunch.

We kind of wish we hadn’t. It was similar to the Mayan, but not as well done. The food was ok, but the service was really slow and, well, we wanted naps.

So, after food, we napped. And then, refreshed and with TPN made, we hurried back into the park.

Brian wanted to ride the Materhorn, so we took advantage of the single rider option again. While he rode, I took Patrick on the teacups. And then we traded. (Brian doesn’t get dizzy like I do, so Patrick had more fun with him than with me.)

The Dumbo ride was not a hit. A long line that, in the end, made him cry.

The Peter Pan ride was broken down and Pinocchio was, well, one of those dreaded story rides.

But at least we found the Mad Hatter and at last got Patrick some ears. (He picked them out.)

So Fantasy Land was a bit of a bust. But at least we got to ride It’s a Small World one more time. (Oh how Patrick loves the La La Boats!)

Then we hopped on the train and rode it around the park so Brian could experience Splash Mountain.

We made the last-minute decision to try to catch the Fantasmic show. So, with time short, we grabbed some dinner and headed to the handicapped area. (By now the other viewing areas were crazy full. Crowds and tubes don’t mix well.)

We met another family there whose daughter used to have a g-tube. They were very kind to Patrick and it was easy to share the tight space with them. (Even though I kind of felt like saying that a g-tube is just a drop in the bucket compared to TPN.)

Patrick decided to climb up in his stroller just as the show started. And was so loud and overwhelming that I ended up covering his ears while kneeling behind him and he wouldn’t let me let go long enough to try for a more comfortable position.

Warning: If you have small children, this show is fun, but a little scary. The evil queen’s dragon made Patrick so nervous that he grabbed the hand of a complete stranger sitting next to him and made her hang on to him for the rest of the show.

Poor little kid. When he saw me at the end of the show, he just held on to me for dear life! Note to self. Hold Patrick on my lap, even if he thinks he wants the stroller.

Immediately after this show, the fireworks show starts. We saved this to the last day on purpose to kind of cap off the day.

Patrick was sleepy and still clingy as we watched the fireworks and snuggled up with his daddy, cheek to cheek, to watch. Brian leaned over and gave me a kiss on the cheek.

And in that moment, my heart was so full.

I don’t know that I can adequately express all of the emotions that this trip brought. First, I felt so blessed that our family had the means to make this trip. Even more, I felt blessed that Patrick had the good health to make it possible. Especially with the scare he’d given us early in the week.

My little family is such an amazing blessing! And as I watched fireworks light the sky and listened to songs about dreams and wishes come true, I couldn’t help but see how lucky I was.

I really didn’t want to see our Disney vacation end. It was so nice to just escape from work and appointments and health problems and insurance issues and, well, all responsibility…to just be together as a family with no other worries.

What’s more, leaving Disneyland meant accepting the reality that our lives really are very fragile, especially Patrick’s. I don’t know if our family will have another chance at a vacation like this again. I hope so. But going back to real life means accepting that reality again.

As I cuddled Patrick to sleep one more time under the glow of our artifical fireworks in our room, I found myself feeling a little tearful and more than a little nostalgic. We’d found a bit of magic and I wondered if I’d be able to hang on to that magic. After all, we’re surely going to have moments where we need some magic in our not so distant future.

We’ll celebrate Patrick’s third miracle day in just a couple of weeks. I think a little magic as a family was the perfect commemoration.

Patrick’s not the best at sleeping without crib rails. More than once during the night, I had to get up to put him back on the mattress. Finally around 7 a.m. he woke up as he rolled out of the bed, looked up and saw the Disney skyline on our headboard and said: “Lights on!” And that was it. He was up. He was excited. It was time to go!

Of course, we had to get dressed, check in with family, put on sunscreen, etc. But we finally made it into the park by late morning.

We decided that since the crowds were at Disney California Adventure because of the new Cars Land, that it would be best to finish up there before the weekend rush hit.

We started out at Paradise Pier, an old-fashioned amusement park area. Actually, we started on the new Ariel ride and learned a lesson that would carry throughout the rest of the park. Patrick does not like the kiddie storybook rides. Riding in a circle looking at animated characters and with a too loud soundtrack in the background is both boring and overwhelming to his sensory system.

Patrick is a thrill ride kid. So of course, the zephyr ride went over with much greater success.

So that’s how we spent the morning, wandering around the pier, looking to see for all rides that were Patrick appropriate.

The ferris wheel didn’t hold his attention much. (He probably would have preferred the cars that slid on rails as the ferris wheel went around, but Brian and I aren’t quite comfortable with heights, so we didn’t even consider that option.)

It was also at Paradise Pier that we discovered the joy of single rider lines. They have an awesome roller coaster there that we wanted to try. So Brian went and got in the single rider line and I took Patrick to the carousel next door. Brian’s ride was over before ours. I took the next turn and they TRIED to watch for me, but my ride was done before they made it to the lookout.

Paradise Pier is also home to the interactive video game Toy Story ride. And, since California Adventure is handicapped accessible, that meant that we waited in the regular line. There was a family behind us who was very, very concerned by the fact that we hadn’t been allowed to skip the line. The mom in the group is a special needs teacher who has taken her class to Disneyland before. And they were just consumed with guilt by the idea that we were waiting in line with them, and worse yet that in the end, they boarded before us because we requested the no-stairs exit from the ride. We were just happy that Patrick was allowed to wait in his stroller and by the fact that in that line he figured out how to drink from my Camelback. And the ride? Well, Patrick didn’t like the 3D glasses and couldn’t figure out the video game gun, but it spun around a lot, so that made it fun enough.

By the time we were done at Paradise Pier, Patrick was pretty well spent. So much so that we waved to Donald Duck from a distance, but didn’t bother with the line. He was asleep by the time we made it out the gate. He slept through us stopping to buy lunch. (Yummy authentic-ish Italian stromboli). He didn’t even wake when I shifted him to the bed. A day riding thrill rides will wear you out!

I caught up on laundry while Brian and Patrick napped. (The laundry room at the hotel was a good quarter mile walk away!)

And then, once we were all rested and done with laundry, we headed back to the park.

We had to stop in California adventure one more time. Patrick still hadn’t had a chance to meet any of the characters in California Adventure. We were lucky enough to catch Mater. This is the only picture where Patrick wasn’t just mesmerized looking at him.

Then we wandered down and tried to catch Luigi’s flying tires, but alas, it was closed. So instead, we posed for a couple more pictures.

A parade got in the way of the other places we planned to go. (By the way, I think I forgot to mention last post how amazing the California Adventure parade is! The floats are awesome, but Patrick’s favorite feature is that there are bubble machines in all the lamp posts and that blow bubbles through the entire parade! Every time we ran into a parade, he got all excited and started signing “bubbles”. A happy little piece of magic that is.)

Anyway, we decided instead of visiting the last corner of that park to stop and get a treat and then head to Disneyland.

So, we bought a banana from a fruit stand. (Bananas are one of Patrick’s current favorite treats. One of the only fruits that is ok with Short Gut.)

We started out with some classic rides in Disneyland. The Jungle Cruise, Pirates of the Caribbean, and the Haunted House. Funny, when I rode those as a teenager, I thought they were nice and tame and family friendly. As mom to a toddler, they seemed quite scary. We worried that we were going to give Patrick nightmares.

Dinner won us points, though. We stopped at a “french” themed restaurant in New Orleans Square and the only safe food we found there for Patrick was chocolate syrup. Chocolate for dinner 2 nights in a row made Patrick a very happy kid.

We thought the Winnie the Pooh ride would offset the scariness and, well.. that was just about as scary, plus it was a loud storybook kid’s ride. Even the honeypots everywhere (Patrick loves the word “honey”) didn’t make him happy with us. So we decided we’d better postpone the other grown-up rides for the night and go to a sure winner. Autopia.

Patrick loved this ride! At first, I tried to let him steer. Then I realized that that ruined the fun for Patrick. So I gave him the steering wheel and floored it. Patrick drives a car a bit like bumper cars. He’d crank the wheel to one side and the car would bang into the rail and he’d laugh and laugh. You’ve never seen a happier kid!

Then, with the sun setting, we wandered over to It’s a Small World. I think that this was his very favorite ride. He loved the boats. He loved the song. He loved the dancing dolls and the bright colors. He talked and talked about the “la la boats.”

And we ended just on time to catch the evening show projected onto the face of the It’s a Small World ride. Then we discovered that the park shuts down right after that for fireworks and kind of followed/were pushed by the crowds right out of the park. It was bedtime anyway.

Patrick dozed off on the way to the room again and went to bed easily and happily at the end of the night. He was a very happy kid and his belly seemed to be feeling much better.

We arrived at the Disneyland Hotel around 2 in the afternoon. It was almost surreal to have finally made it there. There was Mickey Mouse’s statue waving to us, and teacup shaped chairs in the waiting area. The place was a madhouse! But Disney is ever efficient at lines and they had us checking in in no time. Patrick didn’t like Daddy checking in and help trying to trade saying “Daddy up. Mommy talk” and then turning my head towards the service counter.

But he forgave the woman at the reception desk for hogging his daddy as soon as she brought him a balloon, some “I’m Celebrating” badges and an autographed picture of Donald Duck. She called it “some magic.”

The room was, of course, amazing. The entire headboard can be lit up with little tiny LED lights making a picture of the Disney castle with fireworks all around. (Patrick quickly discovered the switch to turn this on and off, made even better by the fact that it played “A dream is a wish your heart makes” every time you turned the lights on. We must have heard this little song at least 3 dozen times during our stay, as Patrick would turn it on, listen to the song, and then do it all again.)

Brian parked the car and had the bell service bring our rooms up to the bag, as by that point we had 4 boxes of medical supplies that had been shipped to us, in addition to our 4 suitcases, 2 laptop bags, and 1 diaper bag.

It probably took an hour to get everything settled in the room and then we were ready at last to head into the park.

Our first stop was the monorail. This was a bit confusing to figure out with our stroller and a crowd, but we made it in the end. The monorail let us out in tomorrowland and then we wandered looking for Main Street.

On Main Street, we stopped at City Hall to get a pass that allowed Patrick’s stroller to be treated as a wheelchair. This was helpful in 2 ways. First, it allowed him to stay in it whenever we were in a long line. Patrick doesn’t do well in lines and his cerebral palsy makes it so he gets tired really quick standing. His tubes are definitely safer when they’re all gathered up in a stroller with a backpack hanging on the back than when he’s down free and running. Second, it gave him the chance to skip some lines. (No, not all lines. But some.) And that helped to keep him out of the sun. Dehydration is a big, big concern for SBS kiddos, especially one whose belly was as sick as Patrick’s was when we arrived.

So we got our pass and then headed back out to Main Street just on time to catch a parade.

I wish I could have captured the wonder and excitement on Patrick’s face when he first saw Mickey and Goofy arriving on a great big float. Instead I got this picture, a few floats in, once the parade was seeming a little too long and a little too loud for him. Still, Patrick seemed to enjoy it whenever he recognized the characters that were there. Not bad for his second every parade.

We kept getting conflicting answers about whether Patrick’s permit covered both Disneyland and Disney California Adventure. So, we stopped there, too, for a pass. Alas, it was just the same and a waste of time, except that it looked nicer aesthetically, and so that’s the one we used.

But, with business settled, we were finally ready to explore the park. We wandered long enough to find the restaurant where we’d be having dinner, and then headed over to Cars Land, which has just opened a few days before and was a madhouse.

It was really impressive to see the detail with which they’d recreated Radiator Springs from the movie. I don’t know that Patrick recognized all of it, but the tire stack in from of Luigi’s definitely was familiar and he was really excited to see Lightening McQueen. (I’m still a little sorry we didn’t stop to meet him, as he was gone the next day.)

But, we had dinner reservations, and so we wandered through, and then headed back to Wine Country Trattoria.

We decided to splurge on this meal. It came with tickets to World of Color later in the evening. And it gave us a chance to try out the Disney Special Diets service. Disney promises that their chefs will do their best to accomodate all special diet needs. So, we called ahead and when we sat down at our table, one of the chefs met us at our table to discuss the menu.

She wrote down Patrick’s allergies and agreed that he shouldn’t be required to purchase a meal and arranged for him to have a ticket regardless. Then, she gave us recommendations about allergy safe pastas we could chose and made my plate (a seafood spaghetti) allergy safe so I could share it with Patrick. And checked in on the rest of the meal, too.

She really won our hearts, though, when dessert rolled around. She came to ask if there was anything she could make for Patrick. I told her that Patrick was really happy if you’d just let him taste chocolate syrup from your plate and asked if she’d drizzle some on a plate for him. She one-upped us on that. She melted pure chocolate onto a plate for Patrick.

Thankfully his belly was feeling better by this meal. At first, he tasted it with a spoon. Chocolate for dinner as his first food in a week.

And it was obviously a hit, as he licked the plate clean.

After dinner, we headed back to Cars Land to ride a few rides.

We started with Mater’s Junkyard Jamboree. I don’t know quite how to describe this ride. The tractors spin around in crazy circle and you’re thrown to opposite sides of the car as they change directions. Patrick was just barely tall enough and LOVED being tossed around.

Then we went to ride the kiddie rides at Bug’s Land. However, after the big kid ride, these were a little boring for him. We got some smiles and a few chuckles, but nothing like Mater’s ride.

After the rides, we headed to World of Color. Our priority seating from dinner let us right down to the waterfront. But we opted to sit in the reserved handicapped area so we could keep Patrick on a bench instead of the ground. (Quick editorial comment. Being sick does grant you certain priviledges. But once you enter a handicapped area, you are no longer entitled to anything more than the other people there. Everyone else is there for a reason, too.)

World of Color was amazing! I can’t even put it into words! Just an breathtaking show! So much more than I imagined.

However, I’d advise that if your child is sensitive to sound, you should pack earplugs. It was loud. But, with ears covered, Patrick enjoyed watching it just as much as we did.

About halfway through, Patrick moved over onto my lap with his feet up on Daddy’s. And the excitement of the day overtook him. He snuggled down and slept through the rest of a very loud show.

We moved him to his stroller still asleep and headed out of the park. He woke at the exit.

We stopped on our way through Downtown Disney at La Brea bakery for a snack and some breakfast for the next day.

Then we went back to our room.

Patrick picked his Mickey Mouse pajamas, which said that he understood exactly where he was. Then he snuggled with daddy while I made his bed. (He sleeps on an air mattress when we travel) and got him his meds.

He fell asleep quickly with the headboard’s firework lights glowing, as happy as can be.

And Brian and I, too, fell asleep totally exhausted but feeling so incredibly blessed to be there.

Taking our little boy to Disneyland isn’t something we really imagined as possible. This time last week, we didn’t imagine it happening even. And yet, there we were. As a family. On our first leave everything behind, non-medical vacation since Yellowstone. The day had gone smoothly. We were all happy and safe.

It was just an amazing feeling. With days of fun still ahead!

Yup. Disneyland is magical.

Well, as mentioned in my last post, our vacation started out looking like this:

But, with the hard work of Patrick’s doctors and some finagling of logistics, we finally made it to California on Wednesday night and spent a long and restless night dealing with a little boy with a very sick tummy far away from home.

Thursday morning things looked better though. Sure, Patrick’s belly had drained over half a liter while he slept and he still looked a bit green at the sight or smell of anything he might be asked to eat. But, as long as you didn’t ask him to eat and kept his belly empty, he did pretty well.

We started out the morning with a walk to the pier for breakfast. The woman at the hotel desk recommended Polly’s on the Pier, and we’re awfully glad she did. Not only was the food yummy, but the setting was a lot of fun, too. The restaurant was, in fact, on a pier, along with a souvenier shop. And all along the edge of the pier were men lined up with fishing poles watching for fish below and then dropping in their line.

Before long, they were joined by a great big pelican who fished in pretty much the same way. Just sat lazily watching for fish, and then dived in if he thought he’d get lucky.

But this pelican was smart. See, some of the fishermen, if they caught a fish, would just offer it to the pelican. Want a fun sight? Watch an 8 year old girl feed a fish to a pelican. Did you know they’ll hold it in their bill (the pelican holds the fish, not the girl) and let the fish just flop around for a while before swallowing? Not a bad breakfast show.

After breakfast, we stopped back in the hotel to finish packing. We stopped to check in with the Oley Conference organizers and let them know we’d made it after all. (After all, this tube-feeding conference had been our motivation for going to California.) Patrick had a great time flirting with other conference attendees while we waited for the hotel staff to find his TPN in the fridge.

Then, while they did a walk-a-thon, we went back and wandered the pier. We wandered through a yacht club and watched some sea lions and sailboats in the harbor for a while. Patrick learned to do a pretty good sea lion impression.

We’d decided to stick around for the Oley picnic that afternoon and meet some of the people I know from our support group. At first, we wondered if it was worth the wait. We just didn’t really know anyone. But before long, one of the organizers caught on that we were there and took to entertaining Patrick.

He got his face painted to match Daddy’s beard, which thrilled him so much he still talks about it.

Then, they sent the wandering magician to entertain him. Gotta say, I was impressed. The magician had Patrick just giggling. No small feat, in my opinion.

Then, when we said we really wanted to get to Disney, they insisted that we eat the free lunch before we left. So, we stayed and mingled a bit longer while Patrick got spoiled out of his mind.

We made it out at last at 1, later than expected, but happy nonetheless.

And, about an hour later, we found ourselves arriving at Magic Way on the Disneyland Resort. (But you’ll have to wait to hear about that tomorrow, cuz I’m too sleepy to keep blogging tonight.)

I am typing this post by the glow of the starlit sky over the Disneyland castle that is built into my headboard…at the Disneyland hotel.

Yes, we decided Patrick was old enough and we had the means, and so we brought Patrick to Disneyland. (P.S. No, we did not Make a Wish. Yes, we know how cool Make a Wish and Disney can be. But we’re waiting till Patrick can speak his wish. And we could do this on our own this year, so we did.)

I could sit up and type all night about today and the events leading up to today, but I’m pretty tired, so I’m going to try to do it in the abbreviated timeline fashion. Here goes.

Sunday evening. Packed all but perishables and entertainment for our scheduled trip. Went to visit family and to pick up headphones at Brian’s work. While out, Patrick started moaning and squirming. For the first time ever, said “yes” when I asked him if he felt sick. Stopped to drain belly. He was burning up. Drove to the ER instead of home.

Sunday just after midnight. Admitted to the hospital with a suspected line infection. Borrowed hospital sweats, since my Sunday dress wasn’t a good nightgown. Went to sleep around 3 a.m. after a brand-spankin’-new intern finally finished taking our history.

Monday morning. Cancelled flights and postponed hotel reservations for Oley National Conference in Redondo Beach, CA. (Our practical excuse for an impractical trip.) Cried some. Told doctors we needed to make it to Disneyland. They said 48 hours of negative cultures and we could go.

Monday afternoon. Noticed Patrick’s glum mood was reflecting ours. Gathered up craft supplies and a balloon and decorated Patrick’s hospital room.

Monday in the middle of the night. Patrick’s nurse woke him and he couldn’t go back to sleep till 3 a.m. Cursed the doctor who refused to

Tuesday morning. Docs said that if cultures stayed negative till 11 p.m., we could go home.

Tuesday afternoon. Rebooked flight, car, hotel. Scheduled TPN supplies to be delivered. Hoped. Prayed.

Tuesday around 11:30 p.m. Got the go ahead to go home. Packed our room.

Wednesday just after midnight. Left the hospital. Drove home. Gave Patrick sleepy meds. Slept.

Wednesday, once the sun came up. Slept in. Went to the doctor to get antibiotics  for an infection I picked up in the hospital. Cleaned. Repacked.

Wednesday around 5, hopped on an airplane to Long Beach. Entertained a very sleepy Patrick.

Wednesday around 10, checked into our hotel. Unpacked. Gave Patrick meds. Cleaned up meds after he threw them up. Drew up new meds and gave them. Helped Patrick fall asleep.

Thursday, sometime between midnight and sunrise. Slept with an earphone to an alarm clock in my ear so I wouldn’t forget to check on Patrick. Drained his belly a bunch of times. (Dunno if he was sick as leftovers from hospital antibiotics or if he really had a virus as the docs suggested might explain the fever.

I promise, after this point, things got to be less eventful. Except for all of the excitement of an afternoon in the happiest place on earth. Hoping I can keep this feeling and these memories till tomorrow so I can write them down.