Tag Archives: food allergies

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.

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.

If you’re wondering why I’ve been acting a little crazy…

What an overwhelming two weeks I have had. If you’ve happened across me you may have found me forgetful, worried, tearful, distracted, jumpy, uncertain, self-consumed or any other manifestation of anxious. I live with anxiety. It’s been part of who I am for a long time. When we were undergoing fertility treatments, it kind of consumed me. Therapy helped teach me to live with it. And now? Well, it’s been a very stressful two weeks and anxiety has been thread running throughout all of it.

It is no surprise that this has been a hard stretch. I’ve been saying for a long time that my goal for August was just to survive.

Brian went to Europe (Ukraine and Poland) for work for 10 days. Wives were invited and I couldn’t go and that hit a lot harder as he got on a plane and left than it usually does when he has to travel. Also, this was one of those real long-haul trips. A long one. And a busy one so that most of our chances to talk to one another were stole little moments when one or the other of us should have been doing something else, like sleeping.  And there is no real cure for a linguist and lover of travel and culture to stay at home while her best friend sees the world without her.

It was also one of those really busy times here at home. As I mentioned in my last post, we have been working with Patrick’s allergist, GI, and dietitian to try to switch him to oral eating instead of enteral (through a g-tube) feeding. I kept a 3 day chart of Patrick’s diet and learned that he’s eating just under 1600 calories a day. The goal is 1800-2000 and therefore, a few more bites at each meal and he may just be there. The log showed that he needs to get more protein into his diet, which sounds challenging since he’s still struggling with typical meats. But I introduced him to fish while Brian was away. (Brian doesn’t like fish). And to fish sticks. And he loved them. And, out of the blue, Patrick started actually eating roast which gives me hope that if I can just get the meat tender enough, he might be able to eat it. Meanwhile, I we are supposed to be encouraging him to eat the proteins he likes like soy cheese and hummus and lunch meat. (I have taken to buying a few of those little buddig lunch meat packets and sometimes just handing one of those to him to snack on.) Knowing he’s a touch allergic to soy, I switched to sunbutter, which was received with lots of pleased “mmm” sounds.

But the mission that really turned me into a basket case this past little while has been trying to make plans for Patrick to go to school. I had the chance to talk to his classroom teacher and also to the school nurse. And the vibe I got from both was worrisome. They both seemed totally great at their jobs. And they both seemed to feel completely in over their heads with Patrick. In fact, both asked me why exactly Patrick wasn’t in the medical hub when it was obvious that he has such big medical needs.

I had long conversations and I wrote long e-mails and I did everything I could to make people talk and work behind the scenes. But I couldn’t do what was really the most needed until today.. I couldn’t meet with the school. I miscalculated. Brian offered to send me to visit one of my dearest friends, Lindy, who lives in Seattle. Her family housed us through I don’t know how many checkups at Seattle Children’s while Patrick was waiting for transplant there. And when we moved our listing to Nebraska, Seattle became too far to travel. I haven’t visited in 2 years. And so, since he was going to be away for a long time and since we didn’t swing a family vacation this year, he offered to send me out to visit.

I wasn’t sure as I was getting ready to go that this was a wise choice, this travelling alone with Patrick when my husband was gone and I had to pack and get us there on our own. It didn’t go well. The day before we left I was anxiety personified. And I went to bed wondering if I’d completely lost my mind.

Thank goodness it was a visit to a friend who helps me piece my sanity back together. It was good to catch up. And it deserves its own post. But as usual, Lindy helped me to talk and work through some of my struggles. And Patrick basked in the love of this amazing family.

And then we came back home and dived into madness again. I didn’t even get to unpack for like 36 hours, things were so busy.

Yesterday I tried to juggle back to school shopping and phone calls and e-mails with Patrick’s medical team and cleaning the house and unpacking and making quality time with my son who is about to leave me during the day. And there weren’t enough hours in the day. And Brian was going to be home in a couple of hours.

And then… Brian’s plane got delayed. And I kept working. And the flight kept getting pushed back. And I started to feel guilty because I started to wonder if my prayers for there to be enough hours in the day were resulting in airport delays. But I just kept at it and soon enough had been done. Patrick was in bed. And my amazing respite worker had come over on no notice to sit with him so that I could go bring Brian home.

And I’ve decided this post is getting too long and so I’m gonna wrap it up with just this thought because today deserves its own whole post too. But here’s the thing…

I’m recognizing that I’ve been just getting by for a very long time. Almost a year. And now that school is on the horizon, I’m trying to piece my life and sanity back together. I’ve started to go back to therapy. And I’ve started to recognize that to let go of this crushing anxiety I’ve been carrying, I have to stop just shoving it down deeper inside.

When you’re just surviving, that’s what you do. You put it down deep as far as you can so you don’t have to look at it and you just carry it with you while you move on. Like when you are at the store and they hand you a receipt and you don’t have really anywhere to put it so you tuck it into your purse. And before you know it your purse is all filled up with wadded up papers and wrappers and odds and ends of spilled things. And you just keep carrying them around because it takes effort to get things back out and look at them and figure out what to keep and what to throw out. That’s where I am. I’ve got all these things tucked down because I didn’t have anywhere to put them. And I’m hoping that I can get them back out and let some of them go.

So you might see me a little bit weaker for a while. It’s ok. That means I’m trying to work through some things. Anxiety is part of who I am. I’m pretty good at squaring my shoulders and pushing forward. But when I get a second to be myself, I’m going to need to work some things out. And it might look messy while I get through it.

Lots of appointments and planning a new normal

School starts on August 19th. My goal in this month prior to school is to help Patrick work up to a school year normal.

Therapy

That means a few things. First, it means restarting outpatient therapy. I took Patrick back to his occupational therapist a month ago. She was so excited to have him back and eager to start working with him on writing and an learning to manage his sensory processing disorder with a new “sensory diet.” (Since transplant, Patrick’s not nearly as controlled by his sensory seeking behaviors. But that doesn’t mean they’ve gone away. However, he’s a lot more tired so the big physical play that used to help focus wears him out fast now.)

The bad news, though, is that Primary Children’s lost a couple of therapists this summer. They have hired a bunch of new ones. But that means that the veterans are very busy with the transition. Patrick’s beloved therapist just doesn’t have time in her schedule to do the weekly therapist that Patrick seems to need right now. However, she’s been shadowed by another therapist in the couple of visits we went to. And so we transferred care, at least temporarily, to a new occupational therapist.

We also agreed to move back to the Taylorsville Clinic. (I have had some bad experiences with the office staff at that clinic and had decided not to keep going there.) Because it shares space with an instacare, Patrick has to wear a mask on the way in and can’t wait in the waiting room. However, it’s closer to home, has a bigger, cleaner gym.  And we were able to basically pick our time on their lightest day.

Our first session went pretty well. His therapist picked up on all the tools we use to keep Patrick on track: a clear schedule, verbal cues, deep breathing, etc. and I think he was calmer for her than has been his usual. The other nice thing is that I think we can pull off going to therapy at 8 a.m. on Mondays to let him get ready for the week at school.

I’ve scheduled evaluations so he can restart speech and physical therapies, too. And he’ll have his last home health feeding therapy session this week.

Evaluation

Also, to get ready for school, we started a new neuropsychological evaluation. Patrick was SO young last time he was tested. And we know that having a healthy gut has changed a lot of things for him. His sensory processing, focus, and other quirkiness is actually a lot less since transplant, even though he’s having a hard time with sitting still, speaking quietly, and controlling his temper. It seemed like a good time to get a new look at his abilities.

So we did an intake interview and in the first few weeks of school, Patrick will be pulled out for 3 half days so I can take him for some testing. Hopefully it helps.

As I mentioned before, we’re working on a behavior plan, too, with his psychologist.. hoping to have him used to a specific set of consequences and rewards that they can use in class. He always does best in class away from me, anyway.

Transplant follow-up appointment & diet changes

We saw Patrick’s GI, Dr. J this week. It was a long appointment. For one thing, I needed Dr. J to sign all new orders for school again. It’s getting smaller each time, though. This time around was only 8 signatures and 6 pages. Compared to 20 the first year, that’s big improvement.

Patrick weighed in at 24 kilos. That’s just under 53 pounds, and up 3 pounds in the past 3 weeks. They had a new dietitian this time and she pointed out that since Patrick’s eating meats (even if they are just hot dogs, hamburgers and lunch meat) he might be eating enough protein to not need as much formula at night. Dr. J was really concerned about Patrick’s 96% BMI and rapid weight gain. He said we need to get Patrick on a regular meal and snack schedule. And he said we should consider doing less “feeding while he is unconscious.”

So, I ran this all past the dietitian in Nebraska. And she made another reduction in Patrick’s formula feeding. I’m supposed to be keeping a log of everything he eats for the next 3 days so she can evaluate what he’s getting and we can start talking about a plan for all oral eating.

I’m not sure if this means needing to add other foods to his diet. Patrick doesn’t really absorb vegetables well. (Dr. J. says they are “just wood” anyway if you don’t have a colon to break them down in.) He can’t eat fruits. So he’ll need vitamin supplements at least.

Allergies

We also saw Patrick’s allergist, Dr. G, today. For years, every time we went to the allergist, he’d say that we’d need to do a whole new workup after transplant when Patrick was ready to eat. Well, Patrick seems to be more than willing to eat. And so it’s important to figure out what exactly he is allergic to. This is kind of tricky with immune suppression because the same drugs that suppress Patrick’s immune system also suppress his allergic reactions. This is good news. But it means that we don’t really know what the potential for allergies is.

So that was today’s goal. Figure out what Patrick might be allergic to. Allergist appointments are always long. Like, crazy long. We were there three and a half hours today. For an hour, we updated Patrick’s medical chart and gave history to a resident. (Which, in summer especially, is a bit like training a new resident.) And then Patrick’s allergist came in and went over possible allergens. I went through a list of things we could test for an highlighted the things I think Patrick might be allergic to. Then the doctor highlighted the things he thought from past test results Patrick might be allergic to. Plus other foods that he thought it would be good for Patrick to try to eat. We tested for just under 40 possible allergens in all. That was all that would fit on his back.

Some of the results were predictable. Cashews and pistachios, off the chart. Eggs still in a big danger zone. Oats were much higher than expected. And I highlighted peaches, oranges, and strawberries because I’ve had my suspicions. They were very surprised when some of those rare things came up positive. We had other positives for foods that rarely to never cause reactions, like tomatoes and wheat. These could be just because they are a big part of Patrick’s diet and not that he can’t safely eat them. Really, all testing done so far, we don’t know almost as much as we did going it.

Nuts, both tree nuts and peanuts, are still a HUGE no for Patrick. We are still a nut-free house, for sure. So are eggs, peaches, corn, oats. However, he tested negative for cow’s milk, which was a very big surprise. (You can outgrow milk allergies but a year ago, Patrick wasn’t anywhere close to that.)

So the next step is to do a blood test. That will test for a different type of reaction. If the negatives in the scratch test match up with negatives in the blood test, we’ll do a food challenge. (For example, offer Patrick cheese.) If positives match up with positives, then we’ll talk about a strategy to keep Patrick safe but eating as much as possible. They will not be likely to stop him from eating foods that he is currently eating without reactions. He might have become desensitized and we wouldn’t want to reverse that by taking something back out of his diet. But time and testing and trial and error will decide. And if the results conflict, meaning if one is positive and one negative, we’ll probably test again.

This is sounding confusing as I’m writing it. It doesn’t change much of what we have been doing. Just helps us try to figure out how to help Patrick eat as much as possible and keep him safe. Meanwhile, we refilled his epi and got correct dosing on his antihistimines and requested a new letter for school. And we got things started.

Patrick was a champion. It was a long appointment and he was very scared. And yet, he was very patient and helpful. He crashed in exhaustion on the way home.

Choosing a school

Enough medical updates though. I have other news. We also have been planning for school by talking to the school district. I had a meeting yesterday with a couple of district representatives (I was being transitioned from one representative to another because of some restructuring). The goal of the meeting was to finally pick a school placement for Patrick. And I did finally make a decision.

Everyone who has spent time working with Patrick: his home hospital teacher, his summer school teacher, his psychologist and group therapy leader.. they all say that he needs to be in a higher functioning self-contained classroom this year. In a regular class, he’d walk all over the teacher and never get anything done. In a low functioning class, he’d gravitate to the classroom staff and not make friends or learn to work independently. And in either, he’d get bored and then get naughty.

But, as I’ve written before, I was uncomfortable with the classroom that he’d go to by default because of our address. Well, a little over a week ago I got brave enough to ask if there were any other classrooms like that one in other schools. Since, after all, I drive Patrick to school anyway.

It turns out, there are several. And the closest to my home happens to be in the town where I grew up. Across the street from my grandpa’s house. And 5 minutes away from Patrick’s therapy office.

All of a sudden, things seemed to fall into place. The class is indoors. It has fewer students. The teacher has a pretty good reputation. And, even though it’s far from home, that family connection will make it feel like Patrick isn’t going to school far away. It isn’t farther from the other school. And it’s in a place I know. I know the neighborhood. If he made friends and wanted to play after school, I could do that. Grandparents, aunts and uncles all live nearby to help respond when he’s sick. Patrick could even, in theory, choose to walk to his grandpa’s instead of me picking him up. Eventually. Once we’re sure he will actually go there when given a chance.

The district folks seemed to think they’d even be open and excited to have me volunteer in the school. (They have a high hispanic population. It sounds like I can use my talents to help.)

I’m a nervous wreck still. All of a sudden being away from Patrick from 9 to 3:45 every day after all this time together sounds terrifying. I wonder if he’ll make friends. I worry because I don’t know ANY of the staff here. Losing my district rep means that EVERYONE will be brand new to me. And I don’t know what writing an IEP and trying to request accommodations is going to be like. And I’m coming in with a very long wish list that I expect them to take care of.

Also, unlike some other places I’ve looked at… this is a very normal school. No big special needs programs. Just two small little special needs units.

And – I still have to make plans for safe lunch AND breakfast in the classroom. Though with only a handful of students, that should be more doable.

To make things worse, I didn’t bother looking up a school calendar until last week. Our district starts the same week of the year every year and I made plans for that. Only THIS YEAR they decided to change things and start a week early. Which means that instead of having a full week to make plans with a new school like I thought, I’ll have just 2 days. 2 days! To give medical training. To make an allergy plan. To make a behavior plan. To orient a whole new team to our family.

I am overwhelmed and scared. A LOT.

We are going to register tomorrow regardless.

Oh yeah.. and last week…

Blogging has been on my to do list for a couple of days. But when I sat down to write last night, I was so full of the thoughts and worries of that 48 hour period that I forgot there were other events last week that I’d meant to write about.

We had a couple of appointment last week. We finally got back in to see Patrick’s psychologist yesterday. Can I tell you how amazing she is? When Patrick’s insurance case manager called me to tell me about a new Autism clinic that she’d seen open at the University of Utah THE SAME DAY THAT SHE CALLED I was pretty speculative. Especially since we have never been big fans of the diagnosis of autism for Patrick. Spectrum diagnoses are tricky and, while time and learning have convinced me that Patrick does have struggles that fit into the definition of autism, his presentation is so atypical that I don’t feel like the diagnosis serves him well. Well, unless you are dealing with someone who really does understand autism spectrum disorders. Which the people at this clinic really do. And for all that I don’t willingly introduce Patrick as autistic, we have found the autism clinic to be a tremendous help for us. I’ve been anxious to get him back.

When Patrick met “Dr. Joo-la” and her “piggies” (guinea pigs) there was an instant connection. I could see that he clicked with her and listened to what she said to him.As icing on the cake, she also saw that with the responsibilities of being his caregiver, I wasn’t going to have a chance to go seek other help for myself. She told me in the first meeting that if we sometimes needed to spend sessions talking about and taking care of me, too, that she considered that an important part of taking care of Patrick.

This last visit, I took her up on that. First of all, she spent a lot of the session reassuring me that Patrick really HAS made great progress. I’ve said before that it doesn’t seem like he is as plagued by constant sensory seeking as he was before. She pointed that out, too. Saying he seemed more focused, more grown up. Of course, his exploding language skills are an amazing step.

She reminded me not to be overwhelmed by after-school meltdowns. Pointed out that we had the same problems last fall, too. And she helped me brainstorm ways to make coming home from school perhaps a little better.

She also reminded me not to feel guilty about not being able to do all my heart says I should be providing for Patrick. She’s been following this blog, so I know that she was aware when she told me that she knew that a lot of days, we are just still surviving the day. She encouraged me to embrace summer school as respite time for me and NOT to try to spend it doing things for him or feeling like I need to save them from problem behaviors. I really need to call and see if it’s an option for me to swim in the mornings while he’s at school. If not, at the least there is a track at the high school on the same campus and I can walk.

And then she reminded me that I need help and tried to help me work up the courage to go and tell some of the people in my support system that I’m feeling lonely and overwhelmed and could use some company, if not some help. I don’t seem to be very good at that. (Does this count?)

Anyway – we talked about some other strategies for summer, for respite, for behavior, etc. We talked about bringing him back to their social skills group. (Which I’m very pleased to have found works well this summer.) We played with the piggies and Patrick tried to trade our bird Max for one. And then we made some return appointments.

That was the happy appointment of the week. The next day, I took Patrick to his allergist and I’m afraid it didn’t go as smoothly.

I learned two important lessons. 1) Don’t schedule appointments immediately following school. Patrick needs time to unwind first. 2) Don’t go to the allergist alone.

Because of his ADHD and sensory processing disorder, Patrick doesn’t do well in new environments and Patrick’s allergist just moved to a big, beautiful new facility. I’m very excited about this because he’s no longer sharing space with a regular healthcare clinic and there’s less risk of catching a virus there. But for Patrick, new spaces have to be explored thoroughly with doors banged, containers emptied, equipment disassembled. It’s a disaster. Also, because of a lifetime of doctor’s visits, Patrick doesn’t like it when I talk to a doctor about him and will do just about anything to get me to stop.

This day was particularly bad. I’d managed to get a tired Patrick to nap the day before, but insomnia kicked in that night and he was up till 12, getting just 6 hours of sleep.

The end result is that Patrick threw all of the flashcards, snacks, magazines, and tissues on the floor. Then ended up having to sit in a chair with all other furniture moved away from him. And then he screamed for most of the rest of the appointment.

I have to give props to Patrick’s allergist, Dr. Gleich. He still smiles, talks to Patrick like Donald Duck, tells me that I have my hands full but am doing a good job being patient, and just gets us through the appointment as productively as possible. He is a very good man.

So while I tried to keep as much calm as possible, Patrick’s allergist and I tried to talk through how transplant might change the strategy for his allergies. Obviously, the ability and need to eat are a significant step. And I wanted to talk about how to safely explore what he can have.. and just how safe it is to be dabbling in some of Patrick’s milder allergies while he is on immune suppressants that are making it so he doesn’t have many reactions.

I wish Patrick had been feeling better so we could have covered more ground. We reviewed Patrick’s last test results. The gist of them is that Patrick’s test results show him allergic to a lot of foods that he tolerates, at least to some degree. We still need to stay far away from cashews, pistachios, peanuts, and unbaked eggs with caution for other foods we’ve seen cause a reaction. He said to keep encouraging Patrick to eat eggs as an ingredient in baked foods as that mild exposure is believed to help kids outgrow allergies. He gave blessing to my efforts in allowing Patrick traces of milk, in extreme moderation. (Goldfish crackers, for example.) He actually was surprised that I was still being cautious about butter and regular cheese, but I pointed out that we see reactions to those foods.

He also took care to warn me of just how serious it is that Patrick’s spleen was removed, leaving him without a major defense against illness. He wanted me to be sure that, for any fever, I know I need to go straight to Primary Children’s. Some things don’t change.

And then, because we weren’t getting much further with Patrick screaming in the corner, we decided to not try additional testing that day. Instead, he asked me to bring Patrick back in July or August for repeat blood and scratch testing. In the meantime, we are supposed to explore and even push a little bit, with epi pen and benadryl nearby, and keep a log of what we discover about Patrick’s tolerances for certain foods.

I find that the further we get down this road the more obscure my question are. Neither Patrick’s allergist nor his transplant team really know how food allergies and immune suppression will affect each other. I don’t want to compromise Patrick’s new gut with a lot of foods he’s allergic to. (Food allergies can cause a sort of rashlike reaction and ulcers in the intestine). But I also don’t want to limit his nutrition and ability to wean off of tube feeds if that’s not necessary. I find myself wishing that I knew of an allergist somewhere who has an interest in transplant and immune suppression. I’m not sure such a person even exists.

Anyway – Patrick was asleep in the car 5 minutes after we left the appointment. Next time, I’ll try to allow time for a rest after school. Next time I’ll try not to go alone.

And maybe over the next couple of months we can figure out a schedule that lets Patrick outgrow naps, like he’s trying to do, without spending afternoons and evenings too tired and grumpy to function.

One other appointment this week, feeding therapy. Inspired by Patrick’s interest at a memorial day barbecue, I decided to work on hot dogs this week. I’m pleased to report success. So long as you cut the hot dog in half so he can fit it in his mouth. And watch him and remind him to take small bites. And maybe let him decide he’s done with the bun. Still, a victory in time for summer for a kid who doesn’t like his burgers grilled.

And speaking of burgers, I’m trying to figure out how to translate Patrick’s love of certain fast foods into a working menu at home. I’ve got him eating ham on english muffins a-la Burger King breakfast sandwich. And we’re working on thin sliced roast beef on hamburger buns as a tribute to Arby’s.

I do have one lingering worry. I’ve realized that if they do decide that Patrick can continue on to first grade next year, that means eating lunch at school. And right now, I mostly have taught him to eat warm foods. He does great with fast food, mac and vegan-cheese, pasta in red sauce, hot dogs, cooked veggies, soups, chicken nuggets and french fries. And this is exactly the sort of food that will be being served in the cafeteria. Except, well, that an elementary school cafeteria is not an allergy-safe place. I can’t expect them to watch for cross-contamination.

So I’ll be packing lunches. But I think one of the conversations we need to have in this week’s school planning meeting is whether or it’s an option to heat up food for Patrick in a staff microwave. (It’s already non-negotiable for me that he’ll need an adult to sit with him in the cafeteria.)

And Patrick’s feeding therapist and I did some brainstorming on cold foods that he might be able to eat if we work with him over the summer.

I’ve decided that we will for sure be frequenting the lunch park at the school next door again this summer. But this time, with the hope and goal of being able to figure out lunches that will work to send with Patrick to school next year. Last year, I was able to follow their menu and pack matching foods 80% of the time. But if those things can’t be warmed up at the school, then we may just have to work on being ok with eating the food you had packed for you, even when it isn’t the same as everyone else’s.

One other item of note from this last week. A family moved in across the street from us while we were in Nebraska. They have a little boy Patrick’s same age. We’ve talked about but not found a way to get them together to play. Until this week.. when this boy came and asked if Patrick could play.

This was a growing experience for this mom. I am trying VERY hard to stop being a helicopter parent now that Patrick doesn’t have IV’s to monitor. But it meant that both of us were a bit thrown by a same-age playmate. I’m not sure Patrick knew quite what to do with him. In many ways, he is like his peers. But in many ways, he still has a lot of growing to do. They drew on the sidewalk with chalk a bit, tried out all of Patrick’s ride-on toys. Then they went across the street and played in his yard, too.

I was doing my best to stay looking busy but also keep an eye on them. And to let Patrick build this relationship on his own without my coaching. Mostly they drove Patrick’s ride-on car up and down the street.

When I picked Patrick up for dinner, he was enjoying a snack of animal cracker. I was grateful they were safe, and I decided that next time I send him to play I need to make sure they know he has allergies.

It’s been a full week. I sometimes think my head might explode trying to hold all of this and have a normal life, too.

Transplant Day 75 and eating

If I had to pick a word to describe the current focus of our days it would be: food. Patrick has always enjoyed food, but also seemed to know that it didn’t sit right with him to eat much, and so he always reigned himself in pretty well. But now that he has his “new belly,” Patrick has a renewed and kind of voracious interest in food.

Yesterday, we started our outpatient time with morning appointments. We got up early to be ready for Patrick’s morning nurse visit and blood draw. (We do this twice a week to check his nutrition and medication levels.) This is a pretty big feat right now. Instead of being able to put Patrick in a tub while I get things ready, right now he needs a sponge bath and the dressing on his ostomy incision changed.

We had an 11 a.m. appointment with an occupational therapist who also does feeding therapy. I needed to call to confirm that the plan really was to see her, because of some confusion as we went out the door on Friday.. and when that call was done, our time was pretty short. Patrick likes to start his day by sitting down and chewing up a couple of slices of ham. He eats for about an hour. And we didn’t have an hour.

So I tried to sweeten the deal. I promised him we could eat out. I’d take him to McDonalds for pancakes. (Note: this was previously one of our favorite mommy/son dates.) Nope. Patrick threw what I think was the first all-out tantrum I’ve ever seen from him. He wanted his ham.

Once he calmed down, we went to McDonald’s anyway. I talked them into giving me some of the ham from the McMuffin sandwich in place of the sausage in the Big Breakfast. He had both ham and pancakes, plus some powerade (which was a splurge).. and he forgave me.

The appointment was interesting. He was all over the place which made it kind of hard to work with him. She did some testing of his fine motor and attention skills, then we talked about food. She explained that she uses a sensory program designed to help kids become brave enough to touch, taste, smell and otherwise explore food. I told her we might already be past that. But we decided to give it a try to see if it would help. And we set up bi-weekly appointments for the next month. (This is terrifying to me. It will burn through Patrick’s therapy visits in no time at all.)

Anyway – once the appoint was done, we came back to the Ronald McDonald House for lunch. This time, soup. Chicken broth is one of Patrick’s biggest go-to foods. He eats at least a cup a day. And he dips at least 4 rolls of slices of bread in it while he eats it. This also can take up to an hour.

Patrick happily came back to the room to play for a little bit in the afternoon, giving me time to get a few phone calls made. (Working on setting up some respite care that we have qualified for once we get home… I’m going to need to hire someone to do this and finding the right person seems like a very intimidating idea. But we’ll get there.)

Then, it was time for school. Patrick did great this time! Would you believe that his teacher can tell him specific letters to write and, although sloppy, Patrick is making the right shapes for them? They also worked on reading a book and some counting and sorting activities. I think it was our best school day here yet.

After school, we had snack time. Thinking that Patrick needs to go back a little bit in food demands and start where babies start learning to eat, I’ve been trying out different big-kid flavored purees. I introduced him to guacamole and he actually really loved it, so we have some for snack every day. And when we ran out and he still wanted to eat, I grabbed the next in the “new foods” category and pulled out a jar of SoyNut butter.

Patrick’s allergic to peanuts and therefore peanut butter, but insisted this week that all kids need peanut butter. So when we found a good allergy-safe department at a grocery store this week I picked up a jar of low-sugar soynut butter. That sounds pretty unappetizing, but I actually liked it better than the Sunbutter (sunflower seed butter) that we tried last week. The taste is pretty similar. And he really liked it.

In fact, after exploring dipping teddy grahams in it for a while, I mentioned that my family has always liked peanut butter filled celery. Well, Patrick wanted to try and I happened to have some celery. Not only did he enjoy licking the soynut butter out of the celery, but then decided to try out taking bites of the celery and chewing it up, too. This is kind of huge from an oral motor skills standpoint.

We ended snack as the dinner group started to arrive to cook dinner. Patrick loves being the welcoming committee for the house and made friends quickly. But we didn’t stay in their way too long. One of the women from church who came and sat with Patrick last week came again last night to play with him. I was feeling caught up enough to stay and get to know her a bit while we played. She brought walkie talkies, which Patrick loved. (And it kind of helped because when he’d sneak away, I could ask him where he was or call him back. I kind of found myself wishing I still had them again today.) Patrick laughed for the whole hour she was here. He really needed that. So did I. And we were excited to find we share a love of hockey. And then she left and we went to dinner.

For dinner, we are a bit at the mercy of what the dinner groups choose to make for us. I’ll make Patrick alternatives but am trying to teach him to try different things that are served to him. Well, last night he just wanted the ham that I’d shorted him for breakfast. After much negotiation, we agreed that if he’d try the spaghetti they’d made, I’d let him have ham. He took two bites and then settled in with his ham.

But of course, just as we started clearing up plates, he asked for spaghetti again and sat down and licked the sauce off of a whole bowl.

We stayed up a little late last night talking to Daddy because it had been too many days and we really missed talking. We didn’t have committments this morning so I figured we could afford to sleep in.

I accidentally woke Patrick sneaking away to go to the potty this morning instead of snuggling with him. So we got up anyway. He really kind of needed a bath anyway, so I went and set up his sponge bath.

But, just as I got him naked, even taking the dressing off of his incision, the fire alarm rang. Talk about bad timing. There we were trying to get a dressing and diaper and clothes while they were banging doors telling everyone they really did need to get out.

By the time we got downstairs, I could see a group that was maybe from the house being led away somewhere far across the parking lot. But I was in PJ’s and Patrick was in an assortment of fleece I’d thrown on him and we were wrapped in blankets and if I was wrong about them, then I’d be crossing the parking lot carrying him (it was so loud he couldn’t settle down to walk) in the cold for nothing. I had grabbed my cell phone, but not my keys so we couldn’t get in the car. I looked up and saw a fire truck approaching and decided that was the better place to go wait.

We walked around front and the firemen came over and brought Patrick stickers and offered him the chance to look in their fire trucks. (He said thanks, but no thanks.) And then, once they had cleared the building, they let us go wait inside. It turned out that some water had leaked and set off the alarm somehow. I really hope they found and fixed it so we don’t have to evacuate every time that room showers. But if we do, I learned a little more about what to bring along and where to go.

The morning schedule was all thrown off. I gave the really time-sensitive medicines, but left some of the others for later. I properly changed Patrick’s surgical dressing and his central line dressing, too. I showered and we got dressed. And then today, because right now 80% of the families staying here have someone staying at the hospital and the house was quieter than usual, we did a laundry morning. We washed the dirty clothes plus most of the linens.

We came back to the room and used some index cards to make a letter and word wall. As Patrick is introduced to new sight words, we’ll add them to the wall under the corresponding first letter. He loves going over and reading me his wall.

Then, Patrick needed out of the house, so I decided we’d take an outing to the dollar store. He carefully considered all the things he could buy and chose a jumbo calculator. I picked up some new scissors for him and some bingo daubers to use in place of do-a-dot markers in some mommy school work.

Then, we decided to go check out the grocery store in the same parking lot. (We actually drove a ways to go to the dollar store.) The store was a big win. They had kid-sized shopping carts which is one of Patrick’s favorite activities. They also had all of his biggest needs.. ham and chicken broth and single serve guacamole and rolls.

The late night and early morning left Patrick in need of a nap. (Because otherwise, he was just being naughty… especially in that he kept sneaking away from me and going to visit people on other floors of the house.) He slept till 6, when I woke up for dinner where he ate his first choice, chicken broth, and then some guacamole (also known as mokily-mokily) because he “loves it so much”. And now we are staying up late watching Blues Clues because going to bed on time is pointless when he naps late.

Tomorrow, I hope that we will actually succeed in sleeping in. And then we’ll eat some more old favorites and new foods and have a little bit of school, too.