Adventures – Page 2 – Patrick Hoopes

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.

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.

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.

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.

The aftermath: Trying to choose which candy to try first.

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.

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

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.

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.

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.

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.

IMG_20151016_111133 — 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.

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.

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.

“What I did this summer” or in other words, a brief summary of the month of July

As usual, summer has been very busy. Brian survived the Youth Conference pioneer trek (they did a one week recreation of the handcart pioneers that helped to settle Utah). Getting last details like their trek booklets and video slideshow kind of ate up all of my attention before and after. And Brian was swamped with getting everything ready both to prepare and clean up from trek, as well as getting work responsibilities squared away. Of course, this coincided with my amazing respite provider being sick for two weeks in a row and I barely held it together, honestly.

As a nice treat, though, my sister came and helped Patrick to bed one night so that I could drive up and visit my husband on the trail. That was a little bit of payoff, despite all of the craziness. Brian was called on to speak to the youth that night. He talked about the women’s pull, when the boys and men leave the carts and the women pull them up the steepest part of the trail in memory of the many pioneer women who crossed the plains without husband because they were divided by circumstance or death. As he talked, I saw a little bit of how it must be for him to watch me struggle right now with my current demands. How helpless he must feel watching me. I’ve been so focused on my own battle that I haven’t really seen things through his eyes that way before.

While Brian was away for youth conference, we celebrated Patrick’s “miracle day.” The 6 year anniversary of when Patrick, basically, died in my arms.. but didn’t leave us. I am still in awe of where we are now considering what happened then. I decided that I’d just scrap all responsibility that day and just focus on Patrick that day. It was swimming day at school, which means I got to go play in the pool. We left there and went out to Arby’s for lunch. (Arby’s has generously donated summer lunches to kids this year and so Patrick and I have been regulars this year.) While there, I asked Patrick what he’d like to do to celebrate and he chose the zoo. And, as we finished at the zoo, I decided to go follow a lead from the morning. The lifeguard at the school pool overheard me saying how hard it is for a transplant patient to find a pool clean enough to swim in. He gave me suggestions of a therapy pool that might be willing to sneak us in during a water aerobics class for a private swim session. In the end, that’s exactly what happened and Patrick and I enjoyed a full hour of having the shallow end all to ourselves. We came home exhausted, ate a quick dinner, and then went to bed early. A perfect way to spend the day.

Patrick’s last day of summer school was a week later and that’s why you haven’t heard much from me. I can’t quite put into words what it is to spend all day every day trying to supervise, teach, potty train, clean up after, and keep nurturing a little boy with this many needs day in and day out.

I’m trying to make the best of summer and shake the guilt of the mom who formerly had amazing mommy school themes planned for every day but now just makes it through the day. Patrick gets up at 6:34 every day. We go immediately to the bath. Patrick’s discovered laying down in the tub and so he has decided to learn to wash his own hair. This means that I can’t just put him in the tub and do things until I’m ready to get him out. He takes care of himself and gets out. Most often. Sometimes I catch him with dry hair and have to send him back to wash it.

We sometimes take lazy mornings where the only goal is making sure he makes it to the potty every time he needs to and that he eats a good breakfast. (He’s discovered cereal now with soy milk and that’s leading to better breakfasts.) Some days, we take some time for playing and learning. I let mommy school slide for a bit and it certainly isn’t organized and awesome, but Patrick started to miss his schoolwork about a week into this stretch of summer break and started to get out his writing books and practicing his letters every day, or grabbing his sight word readers and practicing with me.

Potty training is going well. Patrick has had several all underwear days, even using the bathroom away from home. But sometimes he forgets and sometimes he gets stage fright.

We accomplished Patrick's first away from home potty success when I offered to buy him this car ONLY if he used the potty in Walmart. We went back 3 times until he finally did it. — We accomplished Patrick’s first away from home potty success when I offered to buy him this car ONLY if he used the potty in Walmart. We went back 3 times until he finally did it.

He’ll get restless midday and so we take lunches at the park. We gave up on the location by our house because there were never kids his age there. We now bounce around between different parks, going most often to the one near our home with a shaded play structure. It’s nice to give him the chance to move and interact with other kids. And we’re pretty used to eating the lunches I pack now. Of course, Patrick’s gotten a bit fixated on corn dogs in vegan ranch dressing and picks that most often. But build your own pizza kits, hot dogs, pasta salad, chicken nuggets, and hummus are regular favorites.

A lot of our time is also spent practicing time outs, too. Patrick’s been angry again lately. I talked to his psychologist about it and she pointed out that he’s got a lot of new skills (language, potty, eating) and a lot of new independence now that he doesn’t need feeding tubes. And she thinks that he’s trying to figure out his boundaries again. So we worked out a behavior plan with 3 very careful worded warnings and then consequences when he’s out of control in time out.

I tried starting this behavior plan on the Pioneer Day weekend and it made for a very LONG weekend as Patrick fought back against the new rules and consequences. I don’t think we’ve got things quite right yet.

Just when we were making ground, he caught a cold. Amazingly, it only lasted a few days and went away without many problems. But we had to start all over again once he was better.

We’ve also been continuing to go to social skills group at the autism clinic and Patrick’s attention seems to be getting better the more we go. Plus, I get a pretty fun little show watching a bunch of autistic 4-7 year olds practice circle time and social skills through a two-sided mirror. I’m the old-pro parent there with a bunch of brand new, doe-eyed new parents who are terrified of the diagnosis. I just sit there knowingly, quietly watching. They see behaviors that are confusing and scary to them. I just see autism and know that with a little practice and help, that won’t be a big deal. I know there is a lot more parents can survive and learn to do than they realize, and much more potential in children, too. I also see how Patrick doesn’t act exactly like the other kids in the group and remember why I don’t often use that label to try to explain his needs. But the group helps, regardless, and provides some entertainment for me, too. Especially when the kids come play with their reflections.

With a little bit more time back, we’ve snagged some family time this July. We got our bikes in good riding condition and went to the Jordan River Parkway. I went once. Brian has been taking Patrick back. Brian and I even squeezed in a couple of dates. We went to a movie last night and realized that we aren’t ready for that much leisure time yet. It just felt wasteful to sit in a theater doing nothing and we couldn’t quite comprehend people having time to be regular movie goers. (Not that it’s wrong. Feeling like leisure activities are frivolous is a pretty common side effect of the kind of extreme trials we’ve faces this year.) We also took a morning and went out to breakfast and to the driving range. That didn’t feel quite as frivolous and it was fun to see all those skills we learned in golf lessons coming back. I’ve lost less than I expected. We went to the zoo a few times. Brian had a company party at Boondocks so we went drove go carts, played bumper boats and arcade games, and introduced Patrick to bowling. With a ramp and bumpers, he actually did pretty good at it. Especially in a total overstimulating environment and with a cold.

That’s the long and short version of most of July in a nutshell. I think I’m gonna wrap up this sort of travel log sort of blog post right now. There are some other big things that happened in the past couple of weeks, but I think they deserve a post of their own.

Mini summer

So extended school year isn’t really a very full-time summer school option. It’s 2 weeks on and 2 weeks off. So for the past week, Patrick’s been having a mini summer vacation.

We started off it grand fashion. He has really done well in his new summer school classroom. The kids are much more on his level and I feel like he’s making good progress there. The education is focused on maintaining and, at least in the realms of social skills and keeping a routine, it’s going a long way.

The last day before the break, Patrick had his first turn in the school swimming pool. They invited me to come help, just because he has so little experience in the pool. I’m so glad they did! When I got there, he was already dressed for the pool and waiting for me. I’m used to a little boy who is very cautious in the water. I guess he was watching out for his line, because Patrick was NOT afraid. At all. He was extremely brave. I helped him float and worked on teaching him to hold his breath or blow out if his face got in the water. We got him a floating vest and at one point, I turned my back, and he decided to go on his own. I’ll never erase the memory of him laughing as he rolled over and over again in the water.. trying not to inhale.

I’ve been in a better summer mood this week. I finally made Patrick’s 6th birthday video, 6 months late, as a father’s day gift for Brian. You can view it here. I’ve put it off because it was too hard to look at the life we’d left behind when Patrick went for transplant while he was still recovering. I thought I was in a better place. I was. It was therapeutic. It was also still hard. It made me miss last year’s summer school adventures. It made me miss him having friends. And it made me miss the days before steroids where disappointments didn’t lead to big temper tantrums, leaving me fearful of doing some things. I actually had nightmares all the time I was working on the video.

Trying to duck under without getting wet

But, with it done, I was ready to dive in and make this a good summer, too. I’m still not as organized and awesome as Mommy school. But we’ve done some good things. We had a picnic at Red Butte Garden. We took a cousin and visited the children’s museum. (Called and asked for suggestions of a less-crowded time to visit and enjoyed being there without fighting a crowd.) We’ve toured a few different libraries. We finally started collecting brag badges. We mixed up our lunch routine and went to Liberty Park where we started out just eating hot dogs, but stumbled across their wading fountains and ended up staying 3 hours just because.

We did lots of things, but always ended up back at this car

Asking me where else we could go and what else we could do

It was hot – we sat and took lots of breaks

Patrick begged me for a handicapped parking pass for his ride-on car. I conceded

It was triple-digit heat all last week so I decided that, with the success in the school pool, it would be a good time to get out the backyard swimming pool. This went better than I expected. First, the neighbor’s 10-year-old who often comes to play and help me with Patrick, helped me fill up the pool and taught Patrick how to play in it. I tried putting sunscreen on my own back with spray sunscreen. I haven’t been that burned in years.

The next day, we invited the boy across the street to come play. This was much more on Patrick’s level of play and they had a great time together. This little boy only just barely became a big brother, so there was lots of coaching for both of them about how to play together. But they had successful pool noodle sword-fighting, basketball, water fighting, and general splashing. In the end, I had to call it done because it was well past lunchtime, but neither boy wanted to be done.

Patrick actually spent the rest of that day in the pool, too. He is loving being uninhibited in the water. I love being able to share something I love so much with him.

Alas, though, nothing is perfect. I accidentally pulled Patrick’s g-tube out the day before his first time swimming and it bled a little. We have had off and on g-tube infections since and I’m sure that it’s from spending so much time in the water. Thank goodness it’s supposed to be a cooler, rainy week so I can get away with taking a few days off to let it heal.

The other big event of a summer break is that I decided it was time to work on potty training. I took Patrick to K-mart and let him pick out a pair of big boy underwear the last day of summer school. The next day, I woke up with a migraine, but he was excited to wear them. So we plunged ahead.

He made it through all 5 pairs of underwear in 2 hours, trying his best to “hold it” in between small accidents. I gave him lots of goldfish crackers and praise and did my best to keep things fun and happy. But he was still discouraged. The session ended puddles and a frustrated little boy. I’m pleased to report his mommy stayed calm and positive.

The next day, when I pulled out his underwear, he cried and threw a tantrum that he didn’t want them. But I reminded him it was only for the morning and that there were prizes waiting. After several tries, he finally went in the potty and earned the water gun I’ve been dangling as a carrot for months. The light went on and the next day, he made it several times, staying dry for half the day.

We took the weekend off, and then started again on Monday. I think he’s actually getting the hang of this. We still aren’t accident free and today is the first day I’m trying underwear all day. I don’t know how it will go to have them trying to potty train when he goes back to school next week. I still haven’t tried using a potty away from home. We might need the next long break to solidify what he’s learned. But so far, things are going better than I expected. Now if only I can convince him that this is the better option for him.

(Note: I know this is a long gap without pictures. But I am trying to not post pictures my son will find embarrassing someday when his girlfriend finds this old blog.)

We had a simple 4th of July. The evening was spent at a barbecue with my family. We’d decided to not push Patrick’s limits this year by participating in my family’s huge fireworks. Turns out, that was a convenient choice as it started to rain right after we ate. We left in a downpour but made it home with just a little sprinkling, so we decided to go ahead with our smaller fireworks. (We bought a small pack of fireworks, plus a couple of fountains specifically labeled “silent” so he wouldn’t be scared by the noise.) Who’d have expected, after years of miserable 4th’s and Patrick terrified of fireworks that, on this smaller scale, Patrick would be in love with fireworks. We had to stop and go inside for half an hour because of rain, but when it let up we went out and lit more. He was very upset when he found out we only bought enough for one night.

The rest of the day was simple. Brian hosted a barbecue for his team at work Monday so we spent most of the weekend deep cleaning the house and prettying up the yard. It feels really good to finally have cleaned up some of those messy corners and piles that have been haunting me for being undone since we got home in February. And I caught a clearance sale at the greenhouse down the street. So I got 3 healthy cucumber plants and two basil for free, some adorable patio pumpkins, eggplants, and yellow zucchini as well as a 3 pack of bell peppers for virtually nothing.

Isn't this tiny eggplant adorable? And the flowers are so pretty! — Isn’t this tiny eggplant adorable? And the flowers are so pretty!

Then, we went back later for some miniature sunflowers to fill in the front bed where our irises grow in spring. Brian wanted to plant giant sunflowers from seed earlier this year. We planted a seed in a family home evening lesson about faith. They are as tall as me now. So tying in little sunflowers in the front yard seemed the perfect touch. I’m in love with my sunflowers this year.

I also happened to listen again to this wonderful sermon this week, which only made me more in love with them. The Lord is My Light by Elder Quentin L. Cook, apostle

One of the remarkable characteristics of young wild sunflowers, in addition to growing in soil that is not hospitable, is how the young flower bud follows the sun across the sky. In doing so, it receives life-sustaining energy before bursting forth in its glorious yellow color.

Like the young sunflower, when we follow the Savior of the world, the Son of God, we flourish and become glorious despite the many terrible circumstances that surround us. He truly is our light and life.

We’re plugging away. The stress of having Patrick will me full-time when paired with the Brian’s very busy summer planning handcart pioneer trek reenactment for the teenagers in our church has me running a little ragged. I’ll be honest, when paired with facing my feelings about what we’ve lost, I’ve had more trouble with anxiety and depression lately. So looking to sunflowers as a symbol and reminder of life-sustaining faith and hope, even in the midst of a week where popular voices are calling it old-fashioned, hypocritical, and even bigoted to believe in Christ.. that is helping to lift me up. My sunflower plants really do turn and follow the sun all day. I see them every time I come and go from my house. And each time I do, I remember that it is worth following light, even before flowers bloom. That little seed of faith we planted is as tall as I am and growing more, so long as it follows the light.

One more week of summer awesomeness ahead. This week, we’ll resume our mommy school studies, try to earn a brag badge a day, wear underwear all day, and try to get daddy ready for Trek.

Daddy in Norway

A couple of months ago, Brian came home and told me that the business associate that was visiting from Oslo had surprised him with an offer he didn’t think he could accept. Because the internet is a global enterprise, you shouldn’t be surprised (though you probably haven’t thought of it) to learn that web companies sometimes do business with other companies overseas. This particular one was holding a conference near their headquarters in Oslo, Norway. Brian was invited.

You may not know about me, because I live so deeply in the special needs mom world, that I was a student of linguistics in college. That I love other cultures. That I taught English as a Second Language. That until we became parents that we were travelling as often as occasion allowed. No. If my husband was invited to visit a new place in Europe, I wasn’t going to say no.

I did tell him that I couldn’t promise that I wouldn’t be jealous and/or that I wouldn’t have a hard time holding it together while he was away. But I did promise I would try.

So, last Tuesday as I was dealing with a fire at home, Brian hopped on a plane to Norway, with a connection in Amsterdam. He spent the first part of his week in the conference being shmoozed by the hosting company, with a little bit of touring Oslo in the meantime. Then, he headed off with the friend who’d invited him to a cabin in the Norwegian forest where he biked, boated, and even walked barefoot through a forest so moss-covered that it was as if the forest was carpeted.

I make it a policy to not stay home and sulk if I can help it. A great deal of time and energy was spent working on taking care of our little house fire.

Thank goodness reinforcements also came on time to help with that. With summer starting, the neighbor girl who is doing respite for me started. She worked 3 days last week and it was life-saving. As an added bonus, the neighbor’s 10 year old called and came over a couple of times during the week to play with Patrick. He adores her and it really helps me. Then there was the amazing friend of mine who came to my house after getting her own boys up and ready for the day to help me get Patrick and myself up and ready by 8 a.m. so that we were keeping in habit between Nebraska and the start of summer school. I swear I only showered that week because of her help.

Two other friends worked together to bring in a meal Tuesday night and that, combined with leftovers of a frozen lasagna and spaghetti I’d made Sunday, made up most of what Patrick and I ate that week. I think the most complicated other cooking I did was some vegan macaroni and cheese from a box.

I’ve become aware of a tendency between Patrick and myself to build upon each other’s negativity. If I am in a bad mood and criticize him, then he becomes more defiant and naughty, and I in turn get more strict. So I decided that, as we kicked of summer, we needed a way to encourage more positive speak. I’d read an idea of putting warm fuzzies in a jar when children are caught being good. But I didn’t have any pom poms. What I did have was a bag of rainbow colored foam popsicle sticks. Cut in half, they created a very durable, easy to handle “ticket”. Sunday night, while I was waiting for Brian to see why the internet was out, I slapped some labels on an old gelato jar and a formula can. One for me, one for him. And now, I carry a pocket full of tickets. When I catch Patrick doing something especially kind of helpful, when he obeys when he doesn’t want to, when he gets control of his temper when he is feeling out of control, etc. he gets a ticket. They easily move from my pocket to his. And once or twice a day we empty his pocket into the jar. When the jar gets full, he earns a reward. At first, I was offering kids meals. Now, we’ve opened that up to a dollar at the dollar store, too, since we are filling the jar more than once a week.

Anyway – this has helped the mood in our house. It also gave us a great excuse for an outing.

Wednesday is “library day” in our house. So, once the cable was fixed Wednesday, with Patrick’s jar full, I decided we had earned an outing. I checked out museum passes for the month of June. I thought we’d start with what had been his least favorite museum before, the Leonardo. And then we could go over and visit the city library.

Well, it turns out that the exhibits at the Leonardo have changed a bit and Patrick has grown up a lot. He is a little bit of an engineer at heart, taking after his father and grandfathers in wanting to know how things work. And he couldn’t get enough of the hands-on engineering exhibits at the Leonardo. He wasn’t as much in love with the arts side of things. But, when I thought he’d seen it all and suggested we go, he announced, “No! I love to be here!” And we went and did them all again. We arrived at 3:30. We stayed till 5. That is a long time at one thing for Patrick.

Watching his parachute in the wind tunnel

When we left the museum, I considered moving my car, since it was in 2 hour parking.. but instead let Patrick lead up up the stairs on the outside of the library. You can climb to the roof of the Salt Lake City Library by a long circular set of stairs on the outside. Of course, Patrick did. And then, after playing on the roof, we rode downstairs in the glass-walled elevators to the children’s section. Patrick was enchanted.

The children’s section has a hole fort-like reading corner. We picked out books and went to read. Then Patrick needed a diaper and I remembered my car, now 10 minutes past time to move it. We went outside with the intention of moving the car.. but getting outside reminded us both we were hungry and Patrick voted to go to dinner.

He’d chosen Arby’s for dinner and a downtown location felt just fancy enough. I knew we needed to do some grocery shopping, too, and while we were eating I remembered that the downtown Smith’s location as a fairly large allergy section that I’d never explored. So we went grocery shopping. Patrick was beat! But they had goldfish crackers on sale. (We’re using them to give him small amounts of dairy exposure to try to help reduce that allergy… plus he loves them.) And, as I went looking for vegan mayo, I discovered a new product called “Just Ranch” that happened to be on clearance. It was an entirely vegan ranch dressing. And next to it was “Just Coleslaw Dressing,” though they were out of “Just Mayo.” We picked up a few, headed to the car, and made it home, snacking on goldfish while we drove, just on time to go to get by 8.

Friday, we tried to meet some support group friends at the park. I’d picked an adaptive playground I love because I find them easier not just for wheelchairs, but also for kiddos with TPN or tube feeds in tow. Alas, we ended up there alone. Short gut means hectic schedules and I often end up planning get togethers that only I attend. But we stayed to play, anyway. We’d made up some chicken salad with the Just Coleslaw dressing and Patrick devoured it. (Yay!) Being an adaptive playground means it was full of special needs kids and their special moms. So when the phone rang and it was Patrick’s summer school teacher calling to learn about him before the next week, some sweet special moms just took him in with their own so I could talk.

Saturday, we decided to try out another museum pass. This time to the Museum of Natural History. I’d opted to spend the morning working in the yard before it got too hot. And it was crowded in the afternoon, which made it harder for Patrick to focus. But we still spent a couple of happy hours and I think he got a chance to explore and play with everything that suits his abilities.

Patrick thinks he’s outgrown naps. Really, if I take him for a drive, he sleeps almost every time.

Sunday, we attempted a little more church than usual. Patrick did really well in Sacrament meeting. He set up his toys on the floor and happily entertained himself past our goal of the first talk. It took effort me to stick to my resolution to not overload him and leave once we’d met the goal.

We went home, ate lunch, and talked to Daddy.

That afternoon, I took Patrick back for Primary. His first attempt since transplant. He was tired by then. And overwhelmed by the new place. He said the opening prayer, except he didn’t. They’d whisper ideas of things he might say in his ear, and he’s just say “no.” But he got to talk in the microphone, which made him happy.

Then, he ran wild around the room for the remainder of singing time. (Different to go observe instead of leading.) And then I took him home.

I’ll write more about Monday. Maybe tomorrow. The short version is that he started school, I started working with a district representative to talk about his 1st grade placement, and then we went and brought Daddy home from the airport. That night, I cooked my first real (not restaurant, frozen, boxes or reheated) meal in 2 weeks. And we were all ready to crash by 9.

Transplant Day 219, a fire and the cable guy

The Sunday after we got home from Nebraska was busy. Patrick was definitely still feeling stressed and sore. His primary (children’s sunday school) lesson at home was a total bust and ended abruptly with him getting out of control and then him asking his teacher to end early. He was so out of sorts that Brian just kept him home from church. And most of the rest of the day was spent just kind of trying to just help keep him calm and happy.

So, when Brian was away at church meetings in the evening and Patrick got restless, we went to visit family. And when I got home and the internet was out, I decided to just let it be till the expert got home to check it out. Usually, our server just needs rebooted.

This time, however, the problem was much bigger. Brian went looking for problems when the server and modem seemed ok. He didn’t expect to discover the cable box mounted on the house to be missing.

That’s right. Missing.

While Patrick and I were gone that evening, our cable box caught fire, fell off the house, and melted on the ground. It singed our siding. It melted a sprinkler. And then it burned out. Thank goodness.

I know now what happened, but that night couldn’t imagine how a cable signal box (a.k.a. pedestal) could simply self-ignite. There were burned cables hanging. And I was freaked.

I called Comcast, but got a call center who knows where. There is apparently nothing in the customer service script about what to do in the case of fire. And with the fire out and it being 10 at night, it didn’t seem right to call 911. So I made an appointment for the next day at 1. Then, I made an appeal for someone to come earlier and that somehow made them erase the appointment. Only they didn’t say so.

So the next day, I stayed home and waited for the cable company. When they didn’t come, I started calling. I called 4 times. They had a 12 year old phone number in their records. They kept failing to remove that number from their records. They were having a supervisor call me. Or a special ticket created. Or a field research supervisor. No one called back. No one came. Lesson learned – if you have a problem with a cable box fire, report your service is out. That is the fastest and most efficient way to get help. Don’t mention the fire. They don’t have a solution available for that.

Anyway – meanwhile Brian was supposed to fly to Norway the next day for work. So here we were, trying to get ready for him to leave town. No phone (we use VoIP). No internet. No streaming video. (A problem for Patrick.) And me spending all day on the phone trying to get someone sent out.

Tuesday morning, I finally got the fire department to come and look at the damage. They explained that the fault was likely an ungrounded power meter. With our house not grounded, a surge of electricity had used the cable line as a ground.

And without any resolution, I put Brian on a plane to Europe.

That evening, I got an electrician here. He confirmed that our house had somehow lost its neutral and used the cable line as a ground, causing the box to overheat and burn. He also quoted me the cost of grounding the house. A day without power, a building permit and inspection.. and a hefty dollar price tag, too. I told him I’d get back to him when my husband landed so I could talk to him about the budget.

Wednesday, a friend who had previously worked for Comcast intervened on my behalf. I’d finally gotten a Friday appointment to come investigate the outage. My friend got someone to come out and fix the cable. He replaced the box and ran new cable from the pole, since the existing cable had been melted inside.

Thursday, I got a sprinkler guy here to replace the melted head so I could turn my sprinklers back on. With highs in the 90’s, I wasn’t keeping up with watering.

And finally yesterday, we had the electrician come to replace the meter. The work went smoothly. There was a breakdown of communication between the building inspector and the power company and it was nearly bedtime before we got power back on.

It felt like an especially big burden to take on by myself while my husband was out of town. I am so grateful for friends and family who stepped in to help out with charging, shared wifi, advice, phone calls, referrals, keeping Patrick entertained and other help. I really did feel in over my head. Especially trying to keep Patrick safely away from the downed lines and the workmen all week and juggling his needs with the time required to make phone calls and get things fixed.

Patrick is still mad at me that I haven’t washed the scorch marks off the wall yet. But there are definitely more important things, and safer things, than getting up on a ladder with him “helping” to do that job.

Meanwhile, you may have noticed that the blog was down. Sorry about that. When Comcast restored service, they reset our IP. They aren’t big fans of hosting your own websites on a home internet account. So it took getting the professional, Brian, back home to get things up and running again.

6 months

It is amazing to me to consider how far Patrick has come in the past 6 months. How much our lives have been changed in the last 6 months.

We decided to celebrate Patrick’s transplantiversary and half-birthday in grand fashion. After all, a transplant is an awesome birthday gift but a really sucky birthday party. Patrick deserved a party.

Right before transplant, Brian won a weekend getaway at a work party. So we finally redeemed that trip this weekend. Brian took Thursday and Friday off of work and we drove up to Bear Lake. Patrick was excited about the trip but very confused that our vacation didn’t include a plane. Let’s face it, we often fly off somewhere and THEN drive 3 hours or more once we get there. So a 3 hour drive, while that was a pretty big trip for me at his age, was a pretty small thing for him.

I still can’t get used to packing without TPN. I was able to pack all we needed with each of us only needing a small carry-on bag. I did, however, have two big bags of food that I took with us. Because Patrick is a hungry little monster and having food always available is kind of important. We knew that it was off-season in Bear Lake and we weren’t sure what food options we’d find for him. And besides, it was fun to have lots of snacks.

Patrick doesn't believe in sleeping in the car. But sometimes, he just can't help himself. — Patrick doesn’t believe in sleeping in the car. But sometimes, he just can’t help himself.

The trip was a much-needed dose of rest and family fun. We drove up Thursday afternoon and arrived in the early evening. They were still working on cleaning our room when we got there, so we opted to go for a drive. We ended up in Montpelier, ID for dinner at a little pizza joint. They were kind enough to make Patrick a little cheeseless personal pizza.

I love seeing finished plates that look almost like what other kids leave behind.

It always takes time to get Patrick settled in a new place. Hotel rooms are especially problematic. But we did succeed in finally getting him settled down. We stayed in the family suite so we could have a bathtub and a fridge. That meant, however, that instead of a bunkbed, Patrick had a fold-out couch. Have I mentioned Patrick won’t fall asleep away from home without me? Yeah, my back was pretty sore come morning. Getting too old for fold-out couches.

The next morning, Brian had planned a big surprise for Patrick. After a pancake breakfast, we went to a vacation rental shop and picked up a 4-seater ATV. Patrick has been jokingly asking me if we could drive our car up the side of a mountain for a while now. I think he was surprised to find out that it was actually possible. My thrill-seeking, rough-and-tumble, car-loving boy could barely wipe the smile off his face. He laughed his head off through all of the roughest parts of the path. Finally, we ended up off-roading in some snow and decided we were all tired. So we headed back down, stopped in a meadow for a snack, and then Patrick voted it was time to be done with the mountain.

We ended up stopping and letting him just play with the vehicle for a while before returning it. And then, because we had time and because the vehicle was muddy, ended up driving it over to a car wash.

Patrick is a big Bob the Builder fan right now. So he was really excited to find himself up in rural country where there were also lots of construction vehicles. We had a great time spotting the real versions of diggers and cranes and dump trucks.

He was a little less enthused about visiting the lake. I didn’t think to bring him a camera along. (I need to remember he wants to be a photographer). And he wanted his dad’s. Eventually, though, we showed him the fun of throwing rocks in the lake and then he was sold.

Inbetween outings, we hung out in our hotel room. Amazingly, after the first night, Patrick settled down and was happy to be there so we got the chance to watch a movie together while he played. We also explored a couple of local cafes and I was really proud of Patrick for trying food everywhere we ate. I was also very impressed that they restaurants were all so willing to help us invent Patrick-friendly foods from the items on their menus.

And then, Saturday morning, when Patrick got up he told me that he loved our hotel and didn’t want to go home.

But we had to go home anyway. And, as with any vacation, once we made it home we were all just happy to be here.

Saturday evening, we let Patrick pick his birthday dinner. He threw me a loop by asking for chicken soup and grilled cheese. (With an egg allergy, we can’t just open a can for this.) Thank goodness Daddy was up for the job.

And after dinner, we had birthday cupcakes. We sang Patrick happy unbirthday and he blew out his candle before I could explain making a wish.

Enough wishes have been granted this year for our family anyway. 6 years. And 6 months.

A transplant recipient’s guide to Omaha on a budget

I never blogged about our “vacation” days in Omaha. See, insurance pays for Patrick and one parent to travel for care.. but if daddy comes, too, then we worry about airfare costs and sometimes that means staying a few days. We were beyond bored of our usual Omaha/Ronald McDonald House activities. So Brian declared that we should make it a vacation and try to find new things.

Sometimes circumstances lead you to discover things you might not try otherwise. Like today I had roasted red pepper hummus, veggies, saltines minis and chicken nuggets for lunch.. something i may not have ever planned for lunch if not for short gut and oral aversion and food allergies. But back to travel. Brian did his homework and here are a few discoveries.

Old Market

One of the things that you may not guess about our family because I’m not exactly fit is that we are a fitbit family. Especially on vacation. Brian loves to walk. I love to walk with my family. And so we walk. So of course, when we arrived in Omaha, after unpacking and dinner, we went out for a walk. We heard often about a place called Old Market when we were living in the city. But it was brutal winter and bitter cold for walking and we were too poor and immunocompromised for eating out. So we didn’t go.

Visiting Old Market was high on our list going back. It’s a pretty nifty few blocks of downtown Omaha. Lots of dining, some shopping, and on every other street corner, a musician. Not the creepy of musician begging on the street that you aren’t sure if you should cross the street. Just honest to goodness musicians with their instrument cases in front of them. A drum line. A girl in a flowy white skirt hula-hooping to her friend’s music.

Patrick was in his adaptive stroller and we learned that the combination of cobblestone roads and staircases made this the trickier way to explore the street. (Most businesses had ramps on one side, but few had them on both.) But it was a fun adventure nonetheless. Maybe someday we’ll have time and money and healthy immune systems and we’ll find a place to eat there. A few caught my eye.

http://www.oldmarket.com/

Henry Doorley Zoo

Omaha boasts one of the world’s best zoos and, though we visit every trip, we never feel we have seen it all. It changes with seasons and because the habitats are so real, the animals in view are always changing, too. We spent Thursday morning there in beautiful weather on their spring break, so crowds were bigger and we stuck to more outdoor exhibits, caught the seal training, walked around the rhinos.

http://www.omahazoo.com/

We don’t often explore the lower level of the Leid Jungle. Fun to get so close in such a real habitat

Never noticed the otters here before. Patrick was transfixed

Note: when asking your son to pose for a picture on a rhino, specify if you mean a rhino statue lest he be disappointed

Lewis and Clark Monument

Right before returning home in February, Patrick and I went for a drive. On a whim, I followed some historical markers and we ended up driving to a historic monument in the bluffs above Council Bluffs, Iowa. My little Utah heart that grew up looking down on the Salt Lake Valley from various vistas leapt for joy to find an overlook of Omaha. And I knew I needed to bring Brian back.

So, Thursday evening, when we had just enough time for a drive after dinner, I directed Brian up to the monument. His reaction was almost the same as mine. And of course, Patrick did what he did last time. He started exploring. He noticed a set of stairs and a little trail going off to the side of the monument. We resolved to come back and explore that trail. Because we grew up in the Utah mountains and that is what people who grew up exploring mountains do.

The next day, we packed a crazy little dinner of ham sandwiches and pringles and jell-o cups and we headed out in the late afternoon to explore. We set our watches and checked our fitbits to know how far we’d gone. And we started walking.

We walked around this sometimes steep, often narrow and overgrown but clear train that followed the edge of the bluff. And then we got to where we could see the trail led down into the subdivision at the bottom of the hill. And we turned around and we went back thinking that it was nice, but a bit of a bust.

On the way back, we learned that the actual destination was DOWN the bluff. Down a nice steep incline by the railroad tracks, at the base is a spring. So if you ever want to go hiking there and you don’t mind really steep trails, so explore. It was a bit too much for us with Patrick and my asthma that hates hills. At least this trip. But do go. Especially if you can go in early spring. That was the perfect weather for a hike.

We picnicked overlooking the city. Patrick ate most of his ham sandwich. As much as most other kids would have.

http://lewisandclarktrail.com/section1/iowacities/CouncilBluffs/monumentpark.htm

Strategic Air and Space Museum

Of course, morning were still nippy so we didn’t want to hike in the mornings. Instead, we took a field trip out to Ashland, NE to visit the Strategic Air and Space Museum.

My father-in-law is an engineer. He loves planes. My husband grew up loving planes. This is one he’s wanted to explore for a long time. And it was awesome to let him take his son and share that same love of planes.

The museum has two hangars full of planes, mostly old military planes. Brian can name most models by sight. His eyes light up as he tells me stories of what they were used for. Patrick loved peeking in cockpits and engines and playing with the flight training demo. Though he’ll tell you we didn’t let him ride in any planes because we didn’t have quarters to put in the little ride on planes they had. (You know, the kind you find in front of grocery stores.)

After spending the whole morning in the museum, we bought a parachute toy in the gift shop and Patrick and Brian took turns trying to get it to fly off in the wind on the front lawn.

Then, we went and found the entrance to the state park next door. Didn’t go in, but bookmarked it for next time. We took a little drive through Ashland itself because we love small towns and were hungry. Then we took country roads back into Omaha. Again, hoping to find a quaint little place to eat. But we ended up at Five Guys instead. After several days of eating kids meal hamburgers (Yes, you read that right. Patrick, started eating burgers this trip.) this was one burger Patrick had no interest in at all. Kids and their tastes.

http://www.sasmuseum.com/

Donut Stop

Have I ever mentioned that finding little bakeries is a favorite foodie activity of ours on vacation? Donut and cupcake shops hold a special regard for us, especially. So when Brian found an all-night donut shop in Omaha, he knew we needed to go. After our hike above Council Bluffs, we took a meandering drive to our room through that city. And, along the way, Brian declared we were in the right neighborhood for donuts.

I can’t really capture the essence of this place in words. It was NOT the seattle donut shops we have frequented. It opens in the evening and stays open all night till morning. The stop itself has two big display cases full of a decadent assortment of donuts. And behind the case, two little old ladies frosting trays full of donuts more for the night. Our order was rung up on an old fashioned cash register that popped up our totals on numbered tiles and dinged when the drawer opened. The walls were adorned with pictures and souvenirs from Hawaii and an abundance of pictures of cats.

It was one of the most quaint and unique bakeries I’ve ever been into. We all think the donuts were amazing. Especially Patrick, who suckered me into letting him have his cake donut with pink strawberry frosting on it, even though I knew his belly might complain later.

I’m sure we’ll be back.

http://www.yelp.com/biz/donut-stop-omaha

Bob Kerry Pedestrian Bridge

Saturday morning, we drove through the traffic of a St. Patrick’s Day parade. We needed a less busy place to spend the morning and Brian needed some more steps. There is a bridge that crosses the Missouri River from Omaha to Council Bluffs. There is also a park on either side, both of which are worth a visit on their own. But our goal this morning was to walk across the bridge.

So, we grabbed some Taco Bell. (Waffle of the waffle taco was another hit for Patrick.) Then we bundled up against the Nebraska wind, put Patrick in his stroller and away we went. It was one of the colder days we experienced there so Patrick ended up wearing Brian’s hoodie.

It was fun and peaceful to be out for a walk above a river. Even if Patrick was in a grumpy mood and didn’t want us to hold hands or push his stroller one-handed or do any other number of things that made him feel out of control. After a week of walking, I knew I needed to do more walking when we got home. I was sore and tired. But it was fun.

And when we got to the Iowa side, we walked down in their park to the riverfront and let Patrick out to run for a little bit before heading back.

http://omaha.net/places/bob-kerrey-pedestrian-bridge

Pizza in the park

For lunch, we met some friends at a park. It was one of the most perfect weather Saturdays of the year. The kids (with help from dads) played on the playground. And for lunch, we grabbed some pizza from one of our favorite unique-to-the-area pizza places, Mama’s Pizza. I highly recommend the chicken club pizza.

http://www.mamaspizzaomaha.com/

Pioneer Courage Park

Saturday, after enjoying an amazing roast pork dinner provided by volunteers at the Ronald McDonald House, we checked out of our room and moved to a hotel. We wanted breakfast and a smooth checkout since we needed to leave for the airport around 6 a.m. on Sunday.

We went to a hotel in downtown Omaha and, of course, after checking in went out for a walk. We walked past the ball park and arena and a mural that I don’t know how I didn’t notice was there until just this trip. The end destination was a place called “Pioneer Courage Park.”

The original address we were aiming for was a different sculpture park that we really need to go and see on another trip. But we found our actual destination almost by accident and were so glad to make it there.

Omaha was kind of a gateway for pioneers settling the American west. Especially Mormons. And many people know to travel back and visit Winter Quarters and the Mormon Trail Center. (https://www.lds.org/locations/mormon-trail-center-at-historic-winter-quarters). However, I think I’m going to add this park to my list of recommendations to those interested in that history.

This is an enormous bronze sculpture of a pioneer wagon train. Yes, a train. Several wagons. It is HUGE! You look across the street and there is a herd of buffalo across the street. As I understand it, go a little further and you’ll also find a flock of geese. Anyway, I have never seen the varied stories of the pioneers that settled the American West so completely and emotionally depicted all in one place. This sculpture was amazing.

And Patrick got to chase a bunny rabbit in the dark and jump off of slabs of rock. So we all had fun.

http://www.visitomaha.com/listings/First-National-s-Spirit-of-Nebraska-s-Wilderness-and-Pioneer-Courage-Park/57322/0/#.VRHXnI54rV0

We got back to the hotel and Patrick was greeted by the desk clerk with a gift bag full of toys. As we checked in, she asked what brought us to Omaha. She didn’t expect “transplant followup” as an answer. And she went out of her way to add some extra love to his day. People are amazing.

So – There you have it. How to vacation/staycation on a dime while immune compromised in Omaha, Nebraska. It was fun to come back to the Ronald McDonald House each day and tell the staff about where we’d been or where we were going and hear the interest in their voices about the places we were discovering that they hadn’t even been to themselves. It felt so good to be doing something DIFFERENT while we were there. Making some memories of our own choosing there. Kind of claiming the city for our own.

Transplant Day 132 and a follow-up visit in Nebraska

I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.

It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.

i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.

In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.

Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.

The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.

We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.

However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.

We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.

We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.

Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.

I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?

Oh well..

Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.

The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.

Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.

After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.

And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.

The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty. Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.

We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.

We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.

So overall.. still good news.

And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.

I don’t want to delay the fun, so pictures will have to come in a later post.

Transplant Day 102 and Snow boots

I was almost going to put off writing one more day. Then I thought, “Well maybe I’ll send a short update out just so people know we are ok.” Then I pulled up the blog and realized I haven’t written in almost a week. So I’m going to try my best to post a quick blog. I am very VERY sleepy so this may not be my best.

Things are good here. Patrick’s belly finally has been seeming settled. On Sunday I turned up Patrick’s feed rate without it making him sick overnight.. a first since he got sick and a sign that he might finally have beaten the virus. However, the diaper I changed just as I put Patrick back to bed has me questioning my confidence in that notion and we’ll see what the night brings.

We’ve been working on finding our rhythm again this week. I mixed up the routine a bit this discharge. I realized that it wasn’t worth the struggle of trying to do so many things outside of the room. It just means more exposure for Patrick. And more time spent tracking him down when he wanders or telling him to stay out of things and more bad feelings between us.

He was so happy to be back at the Ronald McDonald House. So happy to be able to play without rules with his choice of toys. The first couple of days he didn’t want to leave the room. So I started making formula here in the room instead of in the kitchen. And I started drawing up his morning meds at night and putting them in the cooler I keep in the room so I don’t have to go get them in the morning. And we don’t go out as much. And we are both cool with that.

But we have had some fun, regardless. Friday, Child Life at the hospital arranged for a mini carnival and haircuts to be held at the same time. So we went over and got Patrick and myself much needed haircuts. And while it was my turn, Patrick got to go into the room next door and play. Then, he got to pick carnival prizes. Only he didn’t just pick for himself. He got gifts for Brian and me, too. He picked me out a bottle of lotion which, really, is the first time I think I’ve ever had him pick a gift for me and struck me as very thoughtful. He picked hoop earrings for Brian, but then noticed a Rubix cube and changed his mind. For himself, a book light that we use every night to read his picture scripture stories.

Saturday, we got together with a friend that Patrick made here at the hospital. They are staying in the Leid, a hotel attached to the hospital. His grandma and I have been watching for a chance to get them together. So on Saturday, I invited them to come play in the snow. We had a foot of snow, but it was 45 degrees and starting to melt.

So, in the morning, Patrick and I ran out to Shopko and bought some snowboots and waterproof gloves on clearance. We also picked up some snow dye bottles. And then we had a McDonalds happy meal together. (The little boy is here doing the intensive feeding therapy program so we thought that eating together might be good peer support for both boys.) Then we went out and played in the snow for several hours. We built a snowman. Patrick’s friend then said we needed a snow elephant, so we built that, too. I dug a box out of the recycling bin and we helped the boys sled on a little hill and they laughed and laughed. We made snow angels. We threw snow at each other, but not snowballs because our perfect packing snow made killer snowballs. A family in the house from Tennessee kind of timidly came out to play, too. I think the moms had as much fun as the kids.

Sledding in a box works when both the hill and the kids are small. We wore out the bottom of the box, though

Patrick putting some extra color on our snowman. When we started, he just had a red hat. But he was already melting as we worked

When we started, the snow in this yard was pristine. I finally realized most of our housemates are from the south so even if they weren’t at the hospital, they didn’t usually play in snow. This just felt better.

And then, by the end of the day the color had all run off our snowman because of the heat and by the end of the next day, he was just a little pile of snow.

Another treat is that Patrick can take baths again. Since transplant, baths have been very limited and often forbidden. With an ostomy, they were possible but had to be short. After takedown, he had an open incision for almost a month. In the hospital, I only do sponge baths. So to be able to put him in the tub and let him play is a treat for both of us. He’s had a few 1 hour baths. One morning, I just put all the towels in the room on the floor to catch the spills and splashed and let him go.

So much has changed for Patrick. It will be a lot to get used to when he comes back. He is eating like crazy these days. I’ve started to let him have snacks to just graze on. I put the in the disposable coffee cups that the house provides. So he munches on cheerios while we drive. I have cheerios in my seats. Who knew I’d be happy for that little milestone one day?

On Sunday evening, I packed him a cup of veggie straws and we went for a drive. He finished his cup after 10 minutes and asked to go back home for more. I didn’t oblige. Instead, we went to drive across the “Mormon Bridge” just cuz we’d heard about it. Then, as I was driving back, I noticed signs for the “Lewis and Clark Monument” outside of Council Bluffs, Iowa. So, we went over there. Arrived just as the sun was setting, reflecting in the Missouri River. Being in a state park, on a hill overlooking the city.. felt a bit like home. Patrick was just happy to wear his snowboots and stomp in snow and mud.

Patrick said “take my picture by this wall”. So I did.

Patrick also snacked on Cheerios all through our Primary lesson this week. We were looking for a room to do this in and found the Sunday house staff member resting on the couch in the room we usually use because her back was out. Patrick just snuggled up next to her and watched her show and ate Cheerios. Then, when her show ended, I told him it was time to do his lesson. So he asked her to join us. She obliged and it was very sweet, and kind of nice to get to have someone else listening as we talked about Jesus and his resurrection and atonement. She even sang along with us. Patrick tried to make her say the prayer, but I persuaded him to teach her about how we pray and let her listen just this one time.

Anyway – I was saying… so much has changed for Patrick. He is growing up in so many ways.

He eats. Kind of all the time. It’s still new and most of what he eats is like what you’d feed a toddler still learning to eat. But he has discovered a love for ham and cheese sandwiches. He chews up and swallows the bread and cheese, but spits out the ham. The first time he did this, I was stunned. When a few days later I offered another sandwich, he said “Mmm. Yum!!” I think he just needs time to go through the developmental stages of eating. I haven’t taken him back to feeding therapy yet because I wanted to give him a week to get better and see what the doctors said in clinic this week. But we are moving the right direction.

He has realized that dirty diapers don’t feel good. Now, he knew this before, but his stool was very different before. It was all liquid and either had to be changed right away or absorbed completely into the diaper. This is different. So we get up and change him during the night if he goes. And he’s learned to go back to sleep after. (A HUGE step for him.) And when we someday can keep a routine long enough, I think we’ll be ready to start exploring potty training again because I think he finally has some control over that.

Meanwhile, this means I am very sleepy. It’s kind of like I have a newborn again. Formula has to be refilled every 4 hours because Patrick’s bags only hold that much. A bigger bag could be put on ice and not need this attention, but then Patrick would have to wear a bigger backpack. He has one, but he prefers the little backpack that doesn’t get in his way when he sits down. Between changing diapers and refilling formula, I am up every 3-4 hours during the night. This is why I don’t blog. I am so sleepy I crash when Patrick crashes. And since naps can mean insomnia, we don’t always make that up during the day.

Taking the snowy way because he has snow boots

He still chews on everything, but he’s given up paci’s. Ok, I’ll be honest. He tried to cave on that today. He found his pacifiers and asked for them back today. But I reminded him he had chosen to be a big boy and didn’t need them anymore. Then I grabbed the sewing kit and cut the paci’s out of his wubbanubs and sewed their mouths back closed. He was sad. He said he wasn’t a big boy. He was a girl. So he could have paci’s. So I grabbed a chewy tube and sewed it onto the hand of his monkey and told him that he was a big boy and his monkey could help him have chewies instead. This kind of worked and he is happily sleeping with his friends again tonight.

Patrick has also made tremendous leaps in language. His first/second person confusion is pretty well gone. And he talking more and about more grown up things. The other day, we had a really off day. We tried to nap and it failed and Patrick had a chip on his shoulder all day, and after fighting about nap, I did, too. Nothing clicked. He kept pushing boundaries. I kept falling for it and snapping at him. Finally, we got to the room in the evening and I sat down and just cried and told him I didn’t like fighting with him anymore. He gave me a big hug. He told me, “I’m a tech.” This is the title of the medical assistants who check vitals at the hospital. I don’t know why this exemplified the most compassionate person he could be at that moment, but I understood that was exactly what he was offering. Then, he got up and got my Kindle and brought it to me and said. “Mom. Look at your Kindle. It calm you.” And you know what, he was right? We sat on the bed and I read my kindle and he played with his tablet and we were calm.

He is still in love with reading. I wish we were making faster gains. It’s really hard when school is only 1 hour a day, 3 days a week and we rarely make it a week without missing at least one day. But I’m trying. On Monday, I pulled out Patrick’s stack of sight word readers and my laptop and I told him that for every book he’d read to me, I’d let him play one game on SesameStreet.org. This strategy actually worked really well. Not only did we practice reading, but we played some educational games. Then, when he wanted more mommy school, I pulled out a little game we have with letters on dice and we built words to and then changed their first letters to find rhyming words. It was one of my better mommy school sessions.

Patrick often pulls out this bike and rides while I do the laundry

And today, we just stayed in the room and cleaned out Patrick’s toys. It helped him remember what he had here so he wanted to play here more. It helped me organize some of what was overflowing. And it gave us a step in the right direction for daddy to come back tomorrow.

Brian has had a doozy of a trip home. He had meetings with a group from out of town last week and a couple of days in, one of them came down with a cold. Well, Brian caught it. And it took him down. He had to take a couple of sick days. When he was still running fevers after a few days, he actually ended up at the doctor where he was diagnosed with bronchitis and given antibiotics and a cough suppressant. But that didn’t mean rest for him. We decided that a last step to really cleaning up the house was replacing the carpet in our bedroom. So, still sick, he moved all of the furniture out of our room so that could be done Monday morning. Then, also Monday morning, discovered that he had a nail in his tire. Had to put on a tire and take it to be repaired.

He is a lot better, but his cough is still lingering so I get to try to reach Patrick’s team tomorrow to figure out if that means that Daddy shouldn’t be around. And then we have to figure out if that means postponing his trip or finding him somewhere else to sleep or wearing a mask all the time or what. This is another new thing for us. Navigating a contagious world with an immune suppressed family member.

It has led me to research into contagious period for certain illnesses. Someday, I’ll summarize that into a handy guide of “how long to stay away if you have been or might be getting sick.” For tonight, this was a handy little document. http://www.bccdc.ca/NR/rdonlyres/8061A728-C969-4F38-9082-B0296EF2A128/0/Epid_GF_childhood_quickguide_may_09.pdf Especially given that Utah is experiencing outbreaks of a few vaccine preventable diseases right now. I’m biting my tongue and trying not to blog about how scared I am coming back to this absolutely ridiculous problem. It’ll probably come out one of these days when I have time, though.

Anyway – I think I’m about out of stories worth telling. Well, maybe just one more. First of all, we survived a very long weekend of no dinner groups at the Ronald McDonald House. I miss the friendly group of families that was here over Christmas. The current group has a more every-family-for-himself attitude that I think has grown out of the panic of cold and flu season. Regardless, knowing that norovirus can be spread in food, I decided we’d better just cook for ourselves. I started to brainstorm dinner with Patrick the other night and he said, “I have a great idea! Let’s have chicken! Like at the hospital.” Well, I’d had KFC one night and apparently he liked it. But KFC was out of chicken and literally locked their doors that night. Odd. So we ended up getting a rotisserie chicken instead and I think we did pretty darn well with instant mashed potatoes and gravy made out of Patrick’s chicken broth. Patrick ate a ton and we were both happy.

Patrick and the Omaha Lancers Hockey Team

But tonight, dinner groups are back. And we started out with a great one. The Omaha Lancers, a junior league hockey team. Not knowing they were coming, Patrick decided to wear his Avs (hockey) sweater today. So he gave us away early as hockey fans. And I’m sure he made and impression and won them over. He traced the player numbers on every team member’s jersey.. then spelled out the letters of their names. They made him pancakes and ham and toast, all current favorites, which of course won him over, too.

Ok. I am out of stories and really should get some sleep.