Scub couts

Photo Feb 03, 5 30 02 PM

Somewhere along the past few years, my husband became a scouter. Ok. To be honest, Brian is an Eagle Scout. But he wasn’t really into the whole scouting as an adult thing. And then he was called to the Stake Young Men’s Presidency, and then as the President. In the Mormon faith, that means that he oversaw the program for boys age 12-18 in several congregations in our area. A large part of that work is a partnership with the Boy Scouts of America.

So, because he wanted to do the job well, he attended the trainings and round tables and other events he was supposed to be at. And, over the past few years, Brian went from reluctant scout leader to a bit of a scouter.

A couple of weeks ago, we went to the District Award of Merit banquet. Brian had earned some awards for his work and training as district commissioner and they were being presented there. He was presented his commissioner’s key and arrowhead and then I settled in thinking we’d enjoy watching others recognized for years of service with District Award of Merit. And then, as they started reading a bio, Brian nudged me. They were describing him. We were both quite surprised. He was touched to have been considered. And I’ll admit, that I was quite proud of my husband.

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Well, it turns out he needed to go pick up a couple of patches for the commissioner awards so the next Saturday found us at the scout shop. And, with Patrick turning 8 and the blue and gold cub scout banquet coming up, I figured we’d let Patrick come inside so we could start to talk up cub scouts a bit.

Well, right as you walked in, there was a cardboard cutout of a cub scout in uniform. Patrick’s eyes got big. He didn’t know boys could have uniforms. And so I took him and showed him the real thing and he was practically drooling.

On the way out the door, Brian pointed out a flyer for a Tiger Cub’s Den. Tiger Cubs are 7-year-old cub scouts. The LDS church’s scouting program starts with wolves at 8. But if you want, you can pay your own dues and find a den and start early. Well, that got us talking and we decided that Patrick would really benefit from the chance to start scouts with a little bit more of the structure that’s available with Tigers. Parents invited. Simpler goals. And a little more organized of leaders. Not to mention the benefits of socializing with other boys his age, setting goals outside of school and survival, etc.

In short, we decided it was time to introduce Patrick to scouts.

Well, one morning I had some time, so I called Scout Headquarters and asked if there was a Tiger Cubs den near me. They surprised me by not recommending the den I’d heard about near us, but instead one about 20 minutes away. I don’t know if they just got their directions confused or if it was inspiration. But they gave me a name and a number.

So I called, and found myself speaking to a cubmaster who had a couple of special needs boys of her own who sounded more than willing to include Patrick. The schedule was right. They were kind of far from home but not too far from his school. I couldn’t have asked for picked better myself had I been given choices.

And so, back to the scout shop we went. Patrick was OVER THE MOON about buying his uniform. From Saturday to Wednesday he said several times a day, “I can’t wait till Wednesday!”

Wednesday came and we came home, did homework, ate dinner early, and headed out to den meeting. I think Patrick did ok. He participated in most of what they did. Wandered only when he didn’t understand the story being read. He earned an art beltloop.

Thursday, he carried his Tiger book around all day. He’s working on learning to read the scout oath. It’s kind of adorable.

And then Friday was the blue and gold banquet. We arrived late because we had attended the Provo City Center Temple openhouse. (More explanation later.) But on time for Patrick to be “knighted,” build a cottonball and tongue depressor catapault, and pull a sword from a stone.  Again, he is so excited to be a part of scouts.

He keeps mixing up the name. He calls is “Scub couts” or “Tiger clubs.”  But really that’s not bad considering he didn’t even know it existed until two weeks ago.

It’s going to be a bit of a commitment. We only have about 6 months to help him earn his Bobcat and Tiger. We get to drive in peak rush hour every Wednesday evening. We’ll be working on family goals in addition to what they do in meetings. But it is time for it.

It’s time for a little bit more of being a boy and a little bit less of being a transplant patient. Some of that living he went through so much to be able to do.

From November to February

It’s been 3 months since I last wrote. 3 months since Patrick’s one-year transplant anniversary. 3 very busy, full and blessed months. And I have kept meaning to write but it was all just going by so quickly, so busily, so trying-to-keep-us-moving-forwardly that I haven’t. Since I’m catching you up, this could be a long one.

This time last year, Patrick was finally showing improvements after a very terrifying battle with “the stomach flu,” also known as norovirus.. something I will never take for granted again. And I wasn’t telling any of you, but the doctors in their morning rounds were talking about how, if Patrick was able to start to tolerate feeds again, they didn’t have any transplant-related reasons for keeping him in Nebraska. We didn’t believe them. We didn’t even dare hope it. And yet, two weeks later on Valentine’s weekend, they sent us home.

In the three and a half months between Halloween and Valentine’s Day, Patrick made such amazing strides. He proved to us that miracles do happen.

And this year, he has done it again. He has come SO far in the past 3 and a half months.

November was challenging. We had a wonderful birthday trip to Disneyland that I have great intentions of sharing with you later. We started out sentimental about transplant. But honestly, after about half a day of the celebration we were ready to start celebrating not where we’d been but where we were going. And so, celebrating his birthday was extra sweet and the beginning of some amazing new things.

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One of Patrick’s favorite activities.. tracing letters. Best done hanging off of something.

When we left on the trip, Patrick was struggling with the transition to school and with potty training especially. I was spending my afternoons at the school trying to find a way to help him through his anxiety. That was a theme of November. Visiting the school and trying to help him to not be afraid and to mediate a peace between him and his aide as they were locked in a battle of wills over the issue.

And then, like that, he succeeded. And we threw a bit of a party for him. We literally danced right then and there. And then another day I was late and when I got there, he didn’t need me after all and I snuck away without him knowing I’d come. And slowly I was able to slip away.

However, with that battle of wills over, Patrick shifted his battle to be more directed at his aide. We started to have big behavioral problems with him at school. One morning, Patrick was avoiding getting ready for school and then he broke down and he cried. He crawled up in my lap and he told me how discourage he was there. And I didn’t know how to help him and I cried, too.

And after two miserable weeks, Patrick’s monthly bloodwork revealed that his Prograf levels were sky high. No wonder he wasn’t happy! He was always grumpy and angry and uncooperative when his levels were so high. So we adjusted the dose and the next day he was back to himself again.

And I did some research and some talking to doctors and some praying and realized that when we’d discontinued Patrick’s tube feeds at the beginning of November, he’d started to take his evening meds on an empty stomach.

It was a big ah-hah! So at an appointment with his GI, where we already were talking about how to push more calories because he was starting to lose weight, we decided to give Patrick a glass of Carnation Instant Breakfast, a.k.a. “chocolate milk” at bedtime. And his levels came back down and you could tell he was feeling better.

The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it's super fun to drink from a syringe. So most "boluses" end up given like this.

The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it’s super fun to drink from a syringe. So most “boluses” end up given like this.

Well, except that he had gotten into a habit of butting heads with his aide. I started having the teacher send home reports of Patrick’s behavior each day. With meds right, most days were better. But we still had some iffy days. And I started bribing Patrick with vanilla tootsie rolls to stay out of trouble at school.

I don’t know if that was why. She doesn’t say it was. But at Christmas break, Patrick’s aide quit and a new aide was hired. The new girl working with Patrick is young, but has a gentler touch and they seem to be getting along. Patrick has gotten a tootsie roll every day since she started. And since they have no potty training history, that problem is a distant memory.

In fact, we’ve shifted from regular accidents to waiting to let Patrick go to the bathroom. We were terrified that dairy was going to be bad for Patrick’s gut. It can be for other intestinal transplant patients. We were really told he’d never be allowed milk. But instead, since adding cheese (Patrick’s absolute favorite food to the exclusion of all other foods), Patrick’s gut has adapted better than we ever imagined.

It’s been a little bit of a difficult transition for Patrick. To go from chronic diarrhea to not. To have his belly feel full in the mornings. He wasn’t much of a breakfast eater before. But now some days it takes a lot of coaxing and imagination and bribery to get him to eat and allow his belly to wake up in the morning. He still does not love going to the potty. And we are often late in the morning as a result.

The biggest problem with this new problem is that it isn’t good for Patrick to refuse to eat. He has lost weight constantly since tube feeds were stopped. At first, it was a lot. He lost very quickly. We’ve been adding calories everywhere we can. Extra butter. Lots of cheese. (Lots, and lots…like 10-servings-a-day-lots). Switching to whole milk which is offered with every meal and also at bedtime. Allowing him to snack from the moment he comes home until an hour before dinner and then to snack again till bedtime, when I offer a “second dinner” if he wants it. I’ve tried “bolusing” extra calories when he refuses to eat. That means, using a syringe and gravity to give milk through the g-tube. But some days his belly is so full that it literally won’t flow in.

Some of the problem is oral aversion. With so many hours a day at school, I can’t really afford using dinners too much to teach Patrick to eat new foods and his repertoire of safe, familiar foods is very limited.

But some of the problem is just anatomy. I’m not sure we can afford to fit many more calories into his waking hours. If he doesn’t at least maintain his weight this month, we may have to go back to some tube feeding.

But that is the medical news. It’s what is turning my hairs grey and giving me wrinkles. But it’s only part of the story.

We had a wonderful Christmas. I feel so blessed to have had a quiet Christmas at home. We bought Patrick his first two-wheeler bike. He took to it immediately and, even with snow on the ground EVERY DAY since the week before Christmas, he has been riding it regularly. We took him out once or twice a day during Christmas break. Because he’s big enough for a 20 inch wheel, you have to jog to keep up with him. (Once we lose the ice, I’ll start riding along-side instead.)

But after a couple of weeks, he fell. It took a couple of times that he was terrified and refusing to ride before we realized that one training wheel was slightly loose and he didn’t feel as steady. So daddy tightened up the training wheel and we told him that he just needed his helmet and he’d feel brave again. That helmet is working like Dumbo’s feather. With it, though he’s not quite as fearless as he was at first, he’s back to flying around the neighborhood everytime the sidewalks are clear enough.

Another big thing that happened in December is that we got Patrick into a psychiatrist. Patrick’s been seeing a psychologist for a few years now. But a psychologist can’t write prescriptions. So, after much discussion and after seeing that Patrick was becoming medically stable enough, we decided it was time to try medication for his ADHD again. Stimulants like ritalin still aren’t an option. Not with their major side effect being appetite suppression. But his doctor suggested a drug called “Clonidine” for impulse control. It’s also used to treat high blood pressure, drug withdrawal, and anxiety. And the transplant team felt that it was an absolutely safe choice to start with. So Patrick’s therapist called a colleague and told him exactly what she wanted him to prescribe.

In December we started giving Patrick a “crumb” of clonidine before and after school. The change was profound. He started to be able to sit through some of church. He started to be able to stay focused on a game or toy that interested him. He calmed down at school. He didn’t have to be reminded to pay attention to his homework. The difference was night and day.

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Of course, it also decreased his blood pressure which made him so tired that he started to fall asleep by 6 p.m. So we had to adjust dosing times a little bit. Now he takes one quarter pill in the morning when he’s well-rested and it carries him through the school day. When I pick him up, he’s starting to get a bit “bouncy” and we let him stay that way. Afternoons are free play time in our house now so that he doesn’t get in trouble for the extra trouble with impulse control as easily. And then at dinner, he takes his second pill. It makes it so he can get through his homework in half an hour instead of 1 or 2 hours or more. And then he starts to get sleepy just on time for bed. And as long as he takes a nap to catch up on sleep on Saturday, this mostly work ok.

Feeling calmer, Patrick’s finally able to get back into more of the kid things that he has loved to do but couldn’t stick with before.

Our church schedule changed from 11 a.m. – 2 p.m. to 9 a.m. to noon. Since this is his very best time of day, and because he’s not distracted by being hungry, he’s able to go to his primary (children’s sunday school) class with an adult helper. (Who is amazing for him.) And then instead of hanging out at the back of the room oblivious to what is going on, he’s sitting with his class and much more engaged in learning.

They gave a challenge to the kids to memorize a verse of scripture last month. So I put a key portion of it on a piece of paper and he read it every day until he could recite it by memory. Then last week, he stood up and recited it in front of the other kids. He was SO proud of himself!

His reading is coming along. So is math. They’ve been teaching him how to use touch math for addition and he’s catching on and starting to believe me when I tell him, “You can be really good at math.” His writing is improving enough that he is handwriting most of his assignments. This can still be frustrating for him sometimes. And he still has a ways to go. But it’s getting better.

With his focus so much better, though, I can see how much memory still gets in his way. He really truly just forgets things. Especially names. PLEASE BE KIND if he asks you your name, even though he’s known you for his entire life and should be able to remember it. I’m beginning to believe that this is a trait of his brain injury. He still misses numbers when he’s counting. He still gets stumped on words I know he knows when he’s reading. And I think it’s a problem with recall that he can’t help.

That makes it all the more amazing that he’s succeeding at memorizing scripture. We’ve picked two more to work on this month. There are some very amazing and specific promises related to scripture study. Especially study of the Book of Mormon. And I have seen that EVERY time that we have used scripture to help Patrick work on a goal that we believe might be impossible because of his injury, I have seen him meet and exceed those goals. Those promises from the Lord are real and can work miracles.

Anyway – I have a lot more to catch you up on. And we have a lot of new milestones ahead of us this month. And so I’m going to end this lengthy post here for now with the hope that I’ll be able to fill in more later.

We are grateful to those of you who have helped us through these last few months. It is not easy to learn to eat, potty, read, write, add, attend school, attend church, make friends, control your temper, and pay attention all at once. I know I couldn’t teach it all myself. So thanks to those who’ve been there to help. And to listen and offer counsel when I’ve been discouraged.

Thanks to transplant, we have a lot of living and learning ahead of us. More than we hoped could be possible. And this has been a big growing season for us as we’ve come to realize that there is a path that lies ahead, and we have begun to try to learn to navigate it.

This parenthood thing.. it’s a lot harder than I ever imagined. It’s forcing me to become a better person than I knew I needed to become.

Patrick’s transplantaversary in the News

I believe I mentioned to before that a reporter came to Patrick’s one-year transplant follow-up. He actually did a really amazing job of putting the story together and of capturing our feelings of gratitude. Here’s the link if you missed it.

http://www.ketv.com/news/halloween-extra-sweet-for-6yearold-transplant-recipient/35997436

Patrick’s 7th Birthday Video

Because we were out of town, I didn’t do a proper share of this video in this blog. So, if you missed it, here is Patrick’s traditional birthday video. Creating this video was a very emotional journey for me. Looking back at Patrick’s transplant journey, some images and memories that I hadn’t revisted in nearly a year was… well…. hard. I shed an awful lot of tears. Especially as we tried to capture our feelings of gratitude for the amazing gift that this year has been.

It’s long this year. It was just too hard to leave anything out of the story. So plan for 20 minutes and bring your tissues.

 

Happy Transplant-a-versa-hallow-birth-day Patrick

This post is quite belated. November was a challenging month which deserves its own post. But I would be quite remiss to skip over a post about Patrick’s exciting October 31.

This year was a huge milestone. Patrick’s 7th birthday. And the one year anniversary of his transplant.

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Last year, we spent Patrick’s birthday anticipating transplant. I had only just wrapped his presents and gone to bed when the phone rang telling us a donor had been found. Around midnight, we were our local children’s hospital being admitted and transferred for insurance purposes and bidding goodbye to Patrick’s faithful GI doctor. A little after 1, we boarded a life flight plane. We were awake (and tearful) all night, arriving at Nebraska Medicine around 6 a.m.

We caught a little bit of sleep and then tried to cram in as much birthday and Halloween celebration as possible. Around 1 p.m. they took Patrick down to have a central line placed and he was kept asleep for the rest of the day.

His long-awaited and sorely needed multi-organ transplant was an amazing birthday gift. The kind of gift from a stranger that still takes my breath away.

However, from a celebration standpoint, that wasn’t much of a birthday. And so, this year we decided that we had a LOT to celebrate.

So, several months ago, we asked Patrick’s transplant team if it was safe for him to celebrate in Disneyland. And they answered with a very emphatic “YES.” In fact, all but swore they’d do everything in their power to get him there. And so, we bought tickets and made plans.

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Parent teacher conference fell just right to give a long Halloween weekend. We left for Anaheim Wednesday night and I couldn’t help see both parallel and contrast as we touched down in the dark and traveled to our room exhausted from a late night of travel.

Here’s some of the highlights from the rest of the trip.

Thursday

We stayed for 3 days. In my mind, a day for each occasion: Halloween, Transplant & Birthday. When we checked into guest services to request a disability card that would allow Patrick to wait for rides without standing in lines. When they asked why and I explained that he was celebrating his transplant anniversary and is immune suppressed, they handed us all I’m Celebrating badges. Patrick insisted we wear them right away.

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Disney Cast Members are trained to watch for badges and offer congratulations. However, I’ll admit that few expected our answer of celebrating a year since transplant. It started to feel a bit strange to keep explaining, so we snuck the badges off when we went back to our room and didn’t pull them back out till we were celebrating birthday.

We decided to head straight for the ride that Patrick loved best last trip. Radiator Springs Racers. What we didn’t think about was that Patrick always has had a good chance to warm up on calmer rides before this fast ride with big ups and downs. He was terrified. But insisted we go again and, well, after the second go broke down crying during the ride. He’s a thrill seeker, but this year Patrick also finally had a sense of fear and we had to be a little bit more careful what he rode on.

We abandoned that plan. And switched to kiddie rides in Bug’s Land. Patrick was much happier there. In fact, he had an awesome time there!

After an afternoon break and nap in our room, we got dressed in our Halloween costumes and headed back to Mickey’s Halloween Party.  Patrick had asked to dress as mechanics, so I’d put together some family costumes of Mater’s Pit Crew. We headed to Cars Land to take a couple of pictures and the costumes attracted extra attention from cast members who offered pictures and even some fast passes and we ended up there longer than planned.

Unfortunately, as we arrived at the gates to Disneyland Park, we realized that we had forgotten to pack Patrick’s evening meds. Howie bravely headed back alone to get them while Patrick and I headed in to find something to ride. With crowds as they were, we were just getting onto the first ride when Brian caught up with us.

We rode a couple other rides in the dark. Then decided to give trick or treating a go. We’d planned to skip it, but when we discovered that there were lower sugar nut free treats available in each cart, and when Patrick was having a great time with it, we hit a few more trick or treat lines. We caught the electric parade and then watched the halloween fireworks before heading back to our room.

Friday

Friday was incredibly busy in the park. That meant fighting crowds in a lot of places and we didn’t ride as much as usual. We did the obligatory multiple rides in Autopia, met a couple of super heroes, and then decided to let Patrick try a couple of grown up rides as he was seeming braver. The was the first time we’ve tried Matterhorn. Unlike other rides, the Matterhorn bobsleds don’t allow for sitting side by side. The meant Patrick couldn’t bury himself into daddy’s side.  I guess he found it fun, but scary. The ride stopped and I turned to see if he was ok (remembering tears the day before). Patrick was lying down in the bottom of the sled.. laughing. I guess it was scary until he got where he couldn’t see.

Big Thunder Mountain Railroad was open for the first time in the years we’ve taken Patrick. He was nervous on this one, but actually really enjoyed it. He asked to ride it again, but with crowds as they were, we ended up grabbing lunch and then heading back to our room to rest.

By the time we came back, it was night and the idea of a roller coaster in the dark was scary. Instead, we headed off to Dumbo and he was much happier.

That night, we decided to watch Fantasmic. We opted to request a seat in the handicapped section so that Patrick could stay in his stroller. That always end up a bit awkward. Patrick is so much younger than everyone else there. But he quickly made friends with a grandma who was sitting there alone while her family was seated somewhere else. Her birthday was on Halloween too, so they had an instant bond.

We tried to stay put after the show for fireworks. Alas, though, Patrick was doing an awesome job in underwear for this whole trip. (He had a couple of accidents on rides, but mostly was good about asking for and making it to the bathroom.)  And halfway through fireworks realized he needed to find a restroom. Oh well.

Saturday

Thank goodness Halloween meant some limitations on entrance and crowds went back down in the park. It was so strange to be there knowing it was Halloween for everyone. Lots and lots of people in costumes. But we’d had our Halloween and were purely doing birthday.

We did some back to back rides of the kiddie roller coaster in Toon Town because there crowds hadn’t found the back of the park yet. At Minnie’s house, the cast member made a big deal of Patrick being there on his actual birthday.

In fact, Patrick absolutely delighted in wearing his birthday badge and having EVERYONE wish him a happy birthday everywhere he went.

After getting our morning fill of rides, we hopped onto the monorail and rode to Downtown Disney. There’s a fairly authentic Italian style pizzeria restaurant there called Napoli. Patrick DEVOURED the pizza there.

Seriously good pizza

Seriously good pizza

Then we went to get his present. A car from Ride Makerz. (This is the car lover’s version of Build a Bear. You design your car. It sounds like it’s starting out fairly inexpensively. But once you add remote control and a rechargeable battery and custom wheels and all.. well… We knew going in. Thank goodness Patrick’s fancy was fairly restrained. The experience was worth it. He loved getting to assemble the car with power tools. And he loves his truck.

We had reservations for dinner. Disney is always so good with dining. But we learned that we have entered a new realm for them. See, they are AMAZING at following allergy precautions. They won’t take a risk with any thing you declare to them. And they have lots of alternatives.

However, we knew going in that Patrick was going to was to order the mac and cheese. In fact, he’d been rather picky all trip and we were fairly sure that the mac and cheese was the only food he’d order on the menu.

So we asked the chef to come visit us at the table to make sure that the pasta and other ingredients they would be using were exactly what I expected and would be safe. Some pasta is made with eggs and unsafe. However, for Patrick pasta manufactured near eggs, as long as it isn’t concentrated eggs, is ok.

Well, before we knew it, we were being visited by the restaurant manager who explained to us that they would not be able to serve him any pasta. Or the cake that we’d special ordered for his birthday.

Only after I’d made a very in depth explanation of the parameters we’ve worked out with Patrick’s allergist would they allow us to order these foods for him.

So lesson learned. Disney is great at avoiding allergens. But don’t tell them your grey areas out loud. I think that’s going to be an ongoing rule as long as Patrick needs to eat food’s that he is mildly allergic to.

Anyway… once food was ordered the dinner was very nice. Patrick beamed at his little miniature cake and really, really loved the sorbet they brought him , too.

After dinner, we headed over the World of Color show. Our dining package reserved us seating in a specific area. And then, on top of that, Patrick had his handicapped pass. However, that really only led to a lot of confusion. It took a lot of walking to find the area we’d be seated in. And once we got there, we weren’t so sure it was where we wanted to be.

The reserved handicapped section was full. Beyond full. Like they had to make people get up and move to make room for us. And they just kept cramming people in.

Really, the problem came down to large family groups that didn’t understand that a family of 12 was too big to all squeeze in with one family member there. Alas, that meant that as we were rule abiding, our family ended up divided. They seated us on a bench so that we could fold up Patrick’s stroller and make room for others. And then they needed more space and Brian got up to allow it. Meanwhile the gigantic family grumbled about how unfair it was to ask them to be separated.

I think maybe next time we’ll have to look more closely at whether or not we can do regular seating. Thankfully, Brian stayed close enough that we could still see each other and the other people he ended up standing with (who were also displaced) were very kind. The show was really nice and Patrick really enjoyed it.

And we went to leave, but Patrick kept talking us into one more ride, and then another and then another and we ended up lingering and riding and then doing a little more shopping so that he ended up getting to stay up till midnight on his birthday.

Monday

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We came home Sunday and had a quiet day at home. And then Monday evening we invited grandparents to come join us for birthday cake. Mixed in with needing to run back and forth to help with Patrick’s school to help take him to the bathroom that made for quite the complicated day. Never decorated a cake in half hour increments with errands in between. But it came together and Patrick loved the little quiet family party at home.

And by the end of the weekend, I was quite satisfied and quite done with reminiscing about how far we’ve come. It is truly miraculous to see what this year has brought. And also, it is time to get back to normal.

That’s what we hope Patrick’s 7th year will be. Just a nice normal year where he can keep growing and we can settle into the normal that we’ve always dreamed for him.

“So what can he eat?”

The other day, Patrick asked his dad for a snack. Brian sent him to me and I heard him say, “She’s your dietitian.”

Yup. That’s what it feels like. All day long, every day, I keep a tally in my head of what Patrick’s eaten. What his reactions have been. What nutrients he might still need. What exposure he’s had to challenging foods vs. preferred foods. And all day long, because Patrick is hungry and asks for food all day long, I am planning what he can eat.

In some ways it’s getting easier. Outgrowing his milk allergy is a really big deal that has opened up a ton of possibilities. If Patrick could live on string cheese, he totally would. In other ways, it’s just gotten more complicated.

Last week, I took Patrick back to his allergist. We’d communicated through his assistant and he’d called me at home to go over allergy test results. But in the end, things were still confusing. So he said to experiment for a month and then come in and he’d help me figure out the results.

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He printed out two copies of the test results. And then we sat down and went through them food by food, comparing the blood test with the skin test and them my own personal experience.

Towards the end of the conversation, he said something about like this. “Patrick is really allergic to a lot of foods. With these numbers, I’d probably tell most patients to avoid them. But Patrick is different. There are two considerations for him: how does he react to allergens? and how does he react because of his transplant? And so we can’t just say he can’t eat any of the foods he is allergic to. For whatever reason, he seems to tolerate a lot of his allergens when they are cooked. So you will keep cooking foods for him with the foods he’s allergic to. And you’ll be very cautious. And you’ll figure out what he can actually eat.”

So in summary. Dear world.. I am very sorry that we are misrepresenting the severity of food allergies in some regards. Really, VERY truly there are people who must entirely all forms of the foods they are allergic to. There are some foods that we still avoid 100%. But if there is some confusion about why Patrick is still eating some things that I have mentioned as an allergy, the simple answer is that if he didn’t, he’d be being fed elemental formula through a tube for the rest of his life. So we are making d0 with a cautious diet.

That said, if you are one of the handful of people still trying to make a sincere effort to cook and/or serve food to include Patrick.. let me give you a rundown of his current diet.

Because of intestinal transplant . . . 

Patrick is on a low sugar diet. This isn’t like a diabetic’s low sugar diet where his blood sugar will swing one way or the other or where carbohydrates need to be avoided. Sugar and some other sweeteners are not easy to digest and sugar can cause Patrick’s gut to not absorb, costing him both nutrition and hydration. In general, I look for 12g or less of sugar on the label. We mostly avoid fruit and fruit juices. And, although Patrick isn’t allergic to cow’s milk anymore, milk is 12g of sugar so I allow him to only drink this in my presence and in small quantities right now.

Also, because transplant didn’t give Patrick the 2/3 of colon that he is missing, he can eat fibrous veggies, but he won’t absorb them. His GI compares this to eating sticks and leaves. Therefore, since these foods are also hard to learn to chew, I haven’t put a lot of effort into teaching him to eat these foods. He loves the softer ones: squash with skins cut off, cooked carrots, mushrooms, cooked onions. We are working on green beans, soft and french style are easiest. He does not like peppers. Patrick is mildly allergic to lettuce, however, and doesn’t digest it at all so I only let him have it when he’s feeling quite left out and insistent. Salads are discouraged.

Because of medication reaction, Patrick isn’t allowed grapefruit. Grapefruit is in fresca. And other fruit drinks. Not that he should have much of those, but watch labels.

As far as allergies go…

Patrick has outgrown his dairy allergy. And if he could have his way, he’d be enjoying an all-dairy diet. He especially loves cheese, though he isn’t a fan of sharp cheddar. He would happily eat sour cream by the spoonful. He eats milk on his cereal. He is getting better with yogurt. I’m still reading labels to pick varieties that are less than 12g of sugar. And we’re doing greek yogurt when possible because it has more protein. His favorite flavor is blueberry.

Yogurt can be tricky, though, because despite not eating much fruit, Patrick does have allergies to it. Patrick is allergic to peaches, oranges, and strawberries. Orange is especially high. Mostly, it’s easy to avoid these as he generally can’t have fruit. I do sometimes give in and let him nibble on a strawberry. In my presence. With benadryl on hand. Also, did you know sweet and sour sauce is made of peaches? We also avoid apricots and mangos because they are similar fruit families. Just FYI.

Eggs are scoring an off the charts 11.7 in the blood test reaction. This number is PHENOMENAL. A 4 or a 6 is considered pretty significant. Therefore, we do our best to keep Patrick away from anything with concentrated egg. Scrambled eggs, crepes, egg noodles, mayonnaise, ranch dressing, tartar sauce, dijon mustard. Be advised that we discovered the vegan brand Just Mayo over the summer, though, and Patrick does eat a lot of “mayo” recipes made from this. He also eats at least a cup of vegan ranch dressing throughout the week. It’s his preferred dip. And he’ll ask for it away from home. The simple answer to this is that he can have only mom’s recipe. He shouldn’t have food cooked on a grill or pan that also cooked eggs.

Nuts are still causing a tremendous reaction in skin tests. Especially cashew and pistachio. And nuts are processed all together in factories. Therefore, we are a nut-free household. We don’t allow them in the door and ask you wash and brush teeth before contact with Patrick if you’ve been around these foods. Peanuts are scoring lower but still high. Therefore, we use sunbutter not peanut butter. And we do still watch out on ingredient labels for “manufactured with peanuts” warnings.

Oats are a pretty low scoring allergy and we’ve opted, based on previous reactions, to avoid them completely in Patrick’s diet. We don’t see a traditional allergic reaction. But they really do upset his stomach. Mostly, you only have to watch out for oats in breakfast food, but really read the labels on cereal.

Corn is also quite high with a significant skin reaction. We have a hard time making heads of tails of this. Corn is so hard to entirely avoid. Therefore, we do entirely almost entirely avoid corn chips, corn tortillas, corn bread, and plain corn. I do let him choose to eat corn dogs as I see little consequence. He sometimes chooses on his own to remove the breading. You might catch me taking mercy on Patrick and letting him splurge on Doritos, Cheetos or corn on the cob. Like oats, Patrick’s reaction is stomach upset and these foods are so yummy and ingrained into our culture that sometimes he and I have a talk about the consequence he’ll pay for eating these foods and then I’ll let him choose. As a rule, leave this kind of spoiling to me. I’m keeping track of what else he’s had in the day and if he can afford the consequences.

Tomatoes also caught me off guard a bit. We tested because I’d seen Patrick react to some spaghetti sauces. But he is usually fine with ketchup. Our best guess that is that the difference is how long the tomatoes are processed. So, when I serve pasta at home, I try to cook the sauce at least several hours. And he seems ok with pizza sauce. Perhaps because it’s baked again before serving? In general, Patrick avoid tomatoes on his own. He’ll choose olive oil over tomato sauce. He’ll choose vegan ranch over ketchup and ranch on his pizza over tomato sauce. I really need to do some exploration into the ingredients of alfredo sauce and I need to let him try besciamella now that he’s allowed milk. But when he has no other option, tomato is another food where I explain the consequences and let him choose. Please know, you can give him ketchup with confidence.

Soy was a surprise to us. Almost. I knew soy milk upset Patrick’s belly which is why we tested for it. But Patrick was eating a lot of other soy foods when we were avoiding dairy. This is a fairly low allergy, but still enough that I see a difference. So we are trying to transition from margarine (still a no no) to butter. (I am finding a big learning curve here.) Patrick’s accepted that it’s ok to eat dairy cheeses but will still check and be nervous about other foods that used to require substitutions. We aren’t avoiding soy all-together. It’s in so many foods. And his score was only a 1. If it’s cooked, like soy sauce or in crackers or whatever, it’s absolutely ok. But if it’s possible to skip it, we do. He had a reaction to canned cream of chicken soup the one time I tried it. Soy is my best guess as to why.

Finally, there’s these crazy little positive results for wheat and barley.  I said, “Barley, no big deal.” Really, I only eat barley like once a year in soup. But wheat? Well, here’s how that conversation went. The allergist said, “He’s allergic to wheat.” And I said, “His diet is over 50% wheat.” He said, “Well, maybe that’s because the wheat is baked.” And I said, “Well, what does unbaked wheat look like?” Him, “Flour. But he wouldn’t like to eat that anyway.” So I said, “So can he bake?” He said, “Of course. Just keep an eye on him.” Me, “And the rest?” Him, “Let him eat wheat.” In other words, don’t feed him gruel. And if you’re baking with him, keep an eye out for inhaled reactions. Otherwise, let the kid eat all the wheat he wants. As long as it’s highly processed. White bread, not whole grain. Since his gut won’t digest whole wheats anyway. That’s a transplant/short gut thing.

So what can he eat . . . 

Patrick’s very best foods are still meat and potatoes. He’s making good progress with oral aversions. But he still has a hard time chewing “grown up” meats, though. So I’m talking about chicken nuggets, hot dogs, corn dogs, lunch meat, fast food hamburger (because it’s super duper soft, unlike what I make, apparently), really tender meats like roast, bacon (because bacon’s good enough that he learned that one). We’re working on canned chicken. We are working on the other meats. It’s slow. But we’ll get there.

Patrick thinks mashed potatoes and gravy are manna sent from heaven. I can’t sort out why he tolerates some gravies better than others. Soy maybe? Or corn starch? I dunno. But I used packaged gravies for him at home and he does great and loves them all. Yes, it is ok to make mashed potatoes with milk now. But not margarine. Plan on Patrick eating at least a cup and a half on his own.

Other potatoes are also really, really good for him because they slow his gut down so he absorbs the whole meal better when he eats them. Plus, they are easy to eat.. Roast potatoes, Potato chips. Tater tots. French fries. The oil which most of us would avoid provides calories for him. Someday we’ll worry about avoiding oils. Right now, we are packing calories.

He’s a big fan of pasta salads. Tossed with olive oil and either italian or ranch seasonings (again, not ranch dressing or real mayo.) I make a big pasta salad every week and he eats it throughout the week until it’s gone. Kraft Macaroni & Cheese has been tested with great results. I make him the old recipe with half a stick of butter in it because, again, I’m packing calories. He really likes to slurp spaghetti noodles and those are always eggless, FYI.

He loves string cheese. He thinks cheese pizza is wonderful, though he’s gaining a taste for ham and mushroom, bacon and vegan ranch, and pepperoni, too. Choose “light” on the sauce if that’s an option. We discovered totinos this week and he would eat it at every meal.

He still loves soups. Progresso’s beef soups are egg-free. They have tomato but it seems processed enough to be ok. Also, the noodles in campbell’s brand shaped chicken noodle soups (goldfish, disney characters, etc.) are also processed enough that they are ok, despite the egg warning on the label. He had his first cream soup this weekend and devoured it. He loves grilled cheese and saltine crackers with soup.

He really enjoys stir fry with rice noodles. Especially if you put zucchini, mushrooms, and onions in it. He’s getting better at eating rice and rice-a-roni.

Other favorite foods include hummus, ham and cheese on their own or in sandwiches, as lunchables, etc., goldfish crackers, cheez-its, and veggie thin crackers, pretzels, chips, rice krispie treats, little smokies, pancakes and waffles, popcorn, cake, donuts, cookies, guacamole (but check the label), Arby’s roast beef sandwiches and curly fries, sunbutter, bananas, apples (though he’s still learning to chew them, black beans, refried beans. We are working on fish sticks, salmon, and other fish.

He wants capri sun, but can only have the low-sugar waters like Roaring Waters. He wants anything other food that is restricted extra exactly because it is restricted. He will do almost anything to earn a tootsie roll or starburst so those, since candy is very restricted, must follow very specific rules. He can have powerade zero and gatorade’s g3, but is kind of tired of them and mostly chooses to drink water.

And dislikes? Well, he doesn’t like stuffing. He doesn’t like peppers. He doesn’t like crust on his bread or skins on anything. He isn’t a big fan of melons. He’s undecided about biting cucumbers. He only sometimes likes pickles. He doesn’t much like foods that are hard to chew. And otherwise, he follows most of the same rules of “gross” that other kids his age abide by.

We went over some of this with the transplant surgeon last week and he said, “Butter, cheese bacon, potatoes. He’s got what he needs to gain weight.” So, although I know this goes against what most people would call an ideal diet, it will work for now while we work towards better.

This summary is long. But I hope it helps. At least to explain what’s going through my head when mealtime rolls around. As I’m trying to turn this list into at least 1600 calories consumed every day.

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Transplant day 349 and the one-year follow-up

We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.

About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.

They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.

He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.

Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.

The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.

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Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.

The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.

Posing with some statues at the zoo

Posing with some statues at the zoo

The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.

Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.

A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.

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Couldn’t resist this photo op.. given that these two missed wearing their matching minion costumes last Halloween.

We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.

After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.

 

And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.

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The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.

The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.

It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.

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We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.

And then, we caught the flight home.

I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.

In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.

Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.

He has come SO far.

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Potty training and post-traumatic stress

“Scripture says, ‘Search diligently, pray always, and be believing, and all things shall work together for your good.’ This doesn’t mean all things are good, but for the meek and faithful, things—both positive and negative—work together for good, and the timing is the Lord’s.” – Neall F. Marriott, Yielding Our Hearts to God

I thought that having Patrick back in school would open up much more free time for things like blogging than it has. However, life is just as busy now as it was before. If not more.

At first it wasn’t. At first, I kind of wandered aimlessly through the days that Patrick was away. I didn’t recognize at first what was happening. I was watching an awful lot of Netflix and I was trying to catch up on things around the house. But I was pretty darn tired and pretty darn disorganized and wasn’t getting through nearly as much as I hoped I would each day. Looking back, I realize that I needed a chance to just reclaim my life a little bit after being a full-time caregiver for a year. I also had to trust that I had enough control over my own life to dare try to do more than these things.

Looking back, it took a lot to teach myself to slow down after transplant. To be ok with days spent sitting in a hospital room or in the Ronald McDonald House just taking care of Patrick. And now that I have the ability to do more, it took a lot to teach myself again that it was ok to NOT just pass the day with as little on my personal to-do list as possible.

That isn’t to say that I’m back to working on my personal to-do list. No, Patrick still commands my schedule right now.

A couple of weeks ago, we went to Parent Teacher Conferences at the school. Patrick is doing great with school overall. I’ve never seen him so well-behaved and engaged in a class. He is making friends. He sits in his seat and he raises his hand. He is making progress in reading, in math (where it turns out that going back and teaching the fundamentals is helping him to be less frustrated), and even in writing despite his severely limited fine motor skills.

However, his qualms about the school bathroom were just getting worse. He went from holding it all day to having accidents. Every day. And then to beginning to have accidents on the weekend at home because he forgot that he was wearing underwear and supposed to make it to the potty.

So, at parent teacher conference, I told the teacher I’d like to take away his pull-ups. However, the district has made the very sucky decision to save money by making special education class sizes almost as big as regular classes. There are 16 kids now in the class that was 9 students when Patrick joined it. Only instead of 16 typical kids, these are 16 kids with learning disabilities and behavioral and medical needs that have to be attended to. I can’t even imagine trying to manage 16 IEP’s.  Thanks Granite School District.

And the message I was getting about potty training was: we’d love to help, but what can we do? We can’t afford to send adults out of the classroom.

And so, if I was going to ask to take pull-ups away, I also needed to offer help. Ok. You’re right. I’m under no legal obligation to help. But if I want to do this the right way, to have Patrick succeed, etc.. then I do.

So, for the past 2 weeks I have been meeting Patrick and his class immediately following their lunch recess to help to take Patrick to the potty. At first it went great. Patrick tried when I helped him and, even though it took a lot for him to get the courage, even went with his aide in the room (and me holding his hand.) I set up a super awesome “potty steps” reward system where I put pictures of each of the steps of going to the bathroom on a pill box and put rewards inside for him to earn.

Meanwhile, I helped in the classroom a little. I assisted at recess so lunches could happen on a field trip day.  I organized a bookshelf. I helped some kids who stayed in from recess to finish up homework.

The second week, though, I think he figured out that I’d end up staying longer if I was still waiting to help take him to the bathroom. And so he waits longer to go. He waits until a moment where his aide is either gone or busy so I end up taking him alone. And so now we’re reinventing things again. It’s very frustrating. There was one particular day where I kind of just sat in the corner and waited for him for several hours. Finally recess rolled around and he still wouldn’t go so I didn’t go with him. I went and sat at the office and waited. And tears started to come and I had to step outside to calm down. He didn’t go at school that day at all. I ended up putting him back in a pull-up and leaving.

But as I sat in my car reading my scriptures, I ended up reading about patience in weakness. And I realized that that is what this is. Just weakness. Just a human struggle. Just and example of the purpose of mortality. And a temporary one at that. And the Savior’s love kind of healed my heart and gave me a great big dose of long-suffering to go along with this struggle. And we’re still at it.

There are some good things about this plan. It’s snapped me out of my Netflix daze. I only have 3 hours in the morning to get things done before I have to eat lunch and get to the school. So I’m actually working in my time at home instead of puttering around. Also, because I’m trying to leave the school by 2:30 most days even though school isn’t over till 3:30, it has given me a dedicated hour for scripture study and for a daily walk. Both of these goals are easier when I know what time of day I’m doing them. Sure, once weather gets bad, it won’t be as pleasant to leave the school and go find a spot to walk and read.. But we’ll cross that bridge when we get to it.

Seeing this is going to be a long-term process, I asked and asked if I could be more useful at the school. And starting next week, I’m going to start helping with a reading group in a different classroom. This frees me up so I’m not hovering over Patrick but keeps me nearby for the daily “do you need to go yet?” standoff.

I hope someday that Patrick will forgive me for blogging about it.

I’ve mentioned before that I have started to go to therapy. And we’ve been talking a lot lately about PTSD. Our whole family struggles with this to some degree.

The thing about living with a trauma is that words can’t capture it for anyone else. But it becomes a part of who you are on a very deep level. I know that there are some people who don’t like to hear me say that Patrick’s transplant was traumatic. How can a miracle be traumatic? But in a very real way, it was.

One little phone call. We left home. We left friends and family. We left work and school. We left everything routine in our lives. We lived for months under constant threat, never knowing what new life-threatening medical issue might arise. Patrick suffered intense ongoing pain. For a child, that is impossible to comprehend. As a parent, that is one of the worst experiences you can live through. It was temporary.. but that doesn’t diminish how hard it was.

And transplant was only the worst of it. We’ve been living with a miniaturized version of it for years.

Facebook has launched a new “memories” feature that shows me, daily, my previous posts from the past 6 years. For two weeks in September, my daily “memories” were of Patrick in the hospital recovering from surgeries or fighting off infections or praying we’d get one more central line in. No wonder I was an anxious, depressed basket case at the start of September. My body has been taught to brace for a fight when that month rolls around.

I’ve also been working this past few weeks on Patrick’s annual birthday video. I sift through a year’s worth of photos and try to pick the ones that tell the story of his last year best.

Last year, I was 6 months late completing this project as I couldn’t stand to look at pictures of the life that we had left behind when we went for transplant. I had to wait till we were starting to see hints of that life coming back.

But this time around. Oh golly. Looking at these pictures has brought back a flood of memories that I had, quite literally, blocked from my memory. Your mind does that. It compartmentalizes the hard stuff so you only pull it out and look at it when you need it.

I have found myself for the past 2 weeks waking up in the middle of the night with vivid memories of the months following transplant. At first, just our hotel room. The carpet. The sink. Then I could remember the ICU. It really shook me. To remember how afraid I was. How much pain Patrick was in. But as I’ve worked, I have also remembered the amazing support we received from friends and family and strangers alike. The feelings of love. And the sweet comfort from the Holy Ghost telling us this was all in God’s plan and would be ok. And it’s brought me peace again.

I’ll apologize now. When I publish this video. It’s long because I didn’t know what parts of the story to leave out. And it makes me cry every time I look at it.

Anyway – all of this. Where am I going with it? Well, it’s much easier to be patient with Patrick when I look back and realize what he’s come through this year. Not just offering it as an excuse as I started out doing.. but genuinely seeing what he’s been through.

In just one year, he’s learned to walk again. He has learned to eat for the first time. He has learned to go to the potty. He has learned to read. He has learned to do basic math. He has learned to speak in clear sentences. He has learned how to strike up a conversation with an adult (usually about their car). He has learned to not be afraid in the water. He has learned to live without a line. How to drink enough water in the day. He is learning how to be safe while being independent, how to play with other children in the front yard, how to play in a different room than me. He has learned how to wash his own hair and get out of the tub when he is done bathing. If he’s a little bit shy and a little bit afraid doing only one of those new things without his mommy (who he was with 24/7 for most of the past year).. that’s really pretty darn good. And he is really pretty darn amazing.

One other thing. Patrick had a doctor cancel an appointment a month ago when she had to go for an emergency appendectomy. It hadn’t occurred to him before that grown-ups might have had surgeries too. In fact, he’s discovering that many grown-ups have been through surgeries. So if he strikes up a conversation by asking you where you had your surgery, know that he is trying to put his experience into context with other people. Trying to find some common ground with his very uncommon experience.

The conversation usually goes like this: “Where you have your surgery?” You answer with whatever general body part and little more explanation required. He might ask “Did it hurt? Did you cry?” You probably will say it hurt. Then he might tell you, “Mommy have hers in her belly button.” I had a laproscopy to diagnose and treat my endometriosis. You give some affirmation. Eventually he’ll say. “I have my surgery on my WHOLE body.” I usually answer with something like, “Yes you did. You were brave and it helped to make you strong.” Something like that.

In another variant, he might tell you it’s ok to be different. To be mad. To be sad. To talk about your feelings. To be missing teeth. (He’s got two missing and a third wiggy right now.) To be a different color. To be bald. To be “indopted.” And he might tell you it’s ok to eat mac and cheese in the bathtub. That’s all a reference to a book by Todd Parr that he’s been reading about why it’s ok to be different. Just laugh along. It’s also ok to have a pet worm.

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Make-a-Wish anniversary and Star-raising ceremony

It’s been one year since Make-a-Wish Utah granted Patrick a trip to Disneyland. When I look back, in some ways it’s hard to believe a year has passed. But mostly, that seems like an eternity ago. So very much has changed in a year.

I’ll be honest. We have known for most of Patrick’s life that he was eligible for a wish. You don’t end up on a transplant list, really, unless your condition is considered otherwise terminal. But we were trying to put that off as long as possible. We wanted Patrick to understand that he was being given a wish. We wanted it to mean something. To not feel wasted on some passing childhood interest. And, more than anything, to be something he’d remember doing.

But two years ago, early in September, Patrick’s central line clotted, sprung a leak and was infected. They had to pull it, but then the surgeon couldn’t get a new one into place. We informed the transplant team of the difficulty. And they took his name off of the transplant list. Without a place for a central line above his heart, the transplant surgery would be impossible.

Patrick in recover after having a line placed in Omaha September 2013

Patrick in recover after having a line placed in Omaha September 2013

We’d known that scarred veins was a problem nutritionally. But we didn’t realize that it made the transplant surgery impossible. And we realized that we were at the end of a road.

The transplant team told us to get on a plane right away and we flew out to Omaha where some very brilliant and very brave doctors managed to get a new central line in place. But now we knew. We were that close to losing the only treatment option that didn’t end in Patrick eventually running out of good veins and starving to death.

And so – we made a palliative care and hospice plan. And we put in a request for Patrick to Make a Wish.

A year later, we headed to Orlando, Florida. That week was one of the most magical in our lives. We stayed at the amazing Give Kids the World Resort. We were given the royal treatment at Disneyworld and Universal Studios. We chased down characters for Patrick to meet. We rode roller coasters.

Checking in at Give Kids the World

Checking in at Give Kids the World

In the village, we celebrated off-season Halloween and Christmas, rode ponies, took carousel rides at almost every meal. We ate ice cream for breakfast. We ordered Patrick’s his first whole pizza. (Made entirely allergy safe and delivered to our door.) We raised a star in Patrick’s honor.

There is no way to describe in words what a wish trip is like. Honestly, other wishes sound cool. But the reason this one is so popular is that it is the ONLY thing like it.

Every child who is granted a wish by our chapter of Make-a-Wish raises a glass star to the ceiling of the Make-a-Wish building. Family and friends are invited for a special ceremony.

We never imagined that, before we’d be home long enough from our trip to schedule the star-raising ceremony. Yet, found myself on the phone with Patrick’s wish granters the day after his transplant telling them just that. We’d need to reschedule.

Because of recovery time and immune suppression, we actually didn’t get around to that star-raising party until just last month. The experience was kind of surreal.

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Patrick, one of his wish-granters, and his McQueen and Mater cake.

Being so much later, it was a bit nostalgic to be back in that building. They took Patrick’s guests on a tour of the building like the one we’d received when he made his wish. And then, they let him use his magic key to open the wishing room in their castle tower. We reenacted a bit for them what had happened as he made his wish.

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Decorating his star

When Patrick made his wish a year and a half ago, they invited grandparents and parents to make a wish on his behalf. Brian and I made what we felt were practical wishes.. For Patrick to live a happy and full life. (Knowing that it might be short.) Grandparents wished for Patrick to receive his transplant. And, honestly, I thought to myself, “I’m so sorry we’ve misled you. Patrick has waited too long. He’s been listed for most of his life. Almost a year and a half at the center that had promised a match before a year was over. It’s too late. That is why he is making this wish.”

And yet, last month there we were… standing in that same room. Patrick free from IV’s and most tube feeds. Having just gorged himself on McQueen cake. Transplant done. In essence, made whole.

I am a witness that prayers are answered. Miracles are real. Wishes come true.

Because we live in a mortal world where test and trial are necessary for our growth, that doesn’t mean that things are perfect. Perfection is something for the next life. But God’s power is very, very real.

We owe a great debt of gratitude to the wonderful people at Make-a-Wish for the unbelievable gift that they gave to us. To the angels at Give Kids the World to helped to make it come true.

Patrick decorated a glass star and then used a string and pulley to raise it to the ceiling. Fitting his style, they said he raised the start faster than any child they’ve ever seen. Almost not giving time to notice the lyrics to this song that they played. Almost. Which is good, because if you were listening it brought tears to your eyes.

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When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do.

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Suddenly, it comes to you
When you wish upon a star
Your dreams come true

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First grade

 

Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.

It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.

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Back to school shopping - breakfast date a Dunkin Donuts

Back to school shopping – breakfast date a Dunkin Donuts

I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.

We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.

He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.

 

And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.

I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.

He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)

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On Patrick’s 3rd day of school, some kids dropped a box labeled “bomb” on the front porch. The school put the kids in lockdown and the school was swarmed with emergency vehicles. Everyone was ok. I watched from across the street at my grandpa’s.

But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.

After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.

After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.

So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.

They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.

I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.

We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.

The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.

We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.

We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.

Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.

Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.

He doesn't get much rest, but when he does, he crashes these days.

He doesn’t get much rest, but when he does, he crashes these days.

As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.

I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)

Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it.  I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.

A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.

But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.

I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.