Category: Adventures

Transplant Day 82 and golden tickets

 

Daddy is back!! Brian got back into town Saturday evening. Patrick couldn’t have been happier. And we’ve stayed busy all weekend.

Mostly, we’ve been busy cooking. If December is the most charitable month that they see at the Ronald McDonald House, January is its leanest. This week only had a couple of dinner groups scheduled. But there are a lot of donated turkeys and hams left over from the Christmas season. So last week, after having pretty good success last week making a ham and having the rest of the house help make side dishes, they offered us a turkey.

Sunday, we Brian helped get a turkey in the oven, and let’s be honest, did more than me watching it to make sure it came out ok. And then yesterday, we went shopping and got ingredients for Brian to cook pasta for the whole house, too. I’m wondering if he’s frustrated with having cooked large meals for large groups of people his first two nights here.

But the food was really AMAZING. And right now, there are only a handful of families living in the house who don’t have kids at the hospital and so if someone is going to be cooking, it is going to be us. It feels good to know we’re helping other people with something that we knew makes such a big difference. And we like the company for dinner, too.

Grocery shopping was just one of our adventures yesterday, though. Because yesterday was a holiday, Brian suggested that we treat it like one. So we went to the zoo. It has been beautiful here the past few days. 50 degrees or better. And so the zoo, of course, was crowded on a day off of school. However, it also meant that there were a lot of animals outside which made for a fun and different zoo experience. We got to see bears and rhinos, which have been inside on our last few trips to the zoo. And since we have been going often, we didn’t feel like we were missing out on some of the more crowded indoor exhibits.

And then, since going to the zoo wore him out, Patrick came back and even willingly took a nap.

Today Brian had to work again. He goes to the computer room down the hall where he can video conference and code. We meet for lunch and then he’s off at dinner time.

Meanwhile, Patrick and I went to feeding therapy this morning. Today, we took some lunch meat ham and the goal was to get Patrick to swallow some of it. It actually worked and Patrick is really excited about wrapping cheese in ham now. He swallowed some ham sandwich, too.

Then, we went grocery shopping. Patrick’s been anxious to go back to the store with kid sized shopping carts. So we went today to pick up some of his staples and to let him spend his tooth fairy money.

That’s right, Patrick lost his second tooth this week. I have been worried. It was loose, but an adult tooth had grown in behind and it still wasn’t coming out. Well, he’s fallen in love with his electric toothbrush and brushing his teeth. And a couple of nights ago, he brushed that loose tooth right out. It took some hunting and sweeping to find the tooth, but we did find it. And it only took a little convincing to persuade him that brushing his teeth wouldn’t knock them all out.

The other new thing this past few days is that there is another kindergarten age girl in the house right now. Her mom has been trying her best to keep her caught up with school work. We decided to try to combine forces. So while we wait for dinner each night, I bring down some of our mommy school things and they study together. They both are staying and working longer this way.

In other news, Patrick’s ostomy incision finally healed enough to not need to pack it with gauze anymore. Just cleaning it and covering it with a bandaid. And that means he can shower. He’s not too excited, but I feel like he gets so much cleaner that way than sponge baths.

Tonight is the first we’ve tried going without a nap since Daddy got into town and I’m questioning my choice. Patrick has been very grumpy. But it’s a tricky tradeoff between sleeping at night and being nice during the day. And I haven’t found a balance that makes him feel good enough to ignore the side effects of his medications. He’s either too sleepy or not sleepy enough and either way he is usually either angry or bouncing off the walls.

I keep thinking that we are going to finally get a routine and get past this. Sometimes I think that we just need to hang on and get home and then things will get better.

But in church this week, they said something that really struck a chord and I’m trying to put it into practice. The speaker reminded me that always waiting for something next to be happy doesn’t usually result in being happy. It just means always waiting. As Dieter F. Uchtdorf taught:

So many people today are waiting for their own golden ticket—the ticket that they believe holds the key to the happiness they have always dreamed about. . .

There is nothing wrong with righteous yearnings—we hope and seek after things that are “virtuous, lovely, or of good report or praiseworthy.”4 The problem comes when we put our happiness on hold as we wait for some future event—our golden ticket—to appear. . .

The happiest people I know are not those who find their golden ticket; they are those who, while in pursuit of worthy goals, discover and treasure the beauty and sweetness of the everyday moments. They are the ones who, thread by daily thread, weave a tapestry of gratitude and wonder throughout their lives. These are they who are truly happy.

Read the full text of this amazing talk here.

So today, when I feel homesick, I’m checking myself and trying to be grateful and productive and happy in the moment I have been given.

Transplant Day 75 and eating

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2014 Year in Review

Sometimes I’m a resilient, flexible hospital mom who is great at making hospital stays homey and fun. Other times, I struggle more, thinking of what we’re missing and feeling stretched beyond my limits making up the difference. Unfortunately, I’ve let myself fall into that the past couple of days. When Patrick didn’t nap on New Years’ Eve and I knew there was no way any of us was making it till midnight, I let it get to me. The limited staff, limited entertainment, limited food choices hospital environment just fed that feeling. And so sorry, I didn’t blog.

But today, I’m resolving to do better. And so I thought I’d pick up a previous New Year’s tradition. The 2014 year in review. (Counting blessings is a good way to fend off bad feelings.) So let’s look back at what 2014 meant for our family.

January – Patrick was in preschool. We were diving in trying to make a plan to solve the struggles he was having there. We started seeing a psychologist and had a meeting with the school staff to come up with a behavior plan.  I started to volunteer almost weekly in the classroom, which I really enjoyed as it was a chance for me to use all of my talents and training in the same place and get to share in and understand Patrick’s days. I also made some very good friends with the school staff that year.

February – Patrick caught a cold and ran a high fever that landed him in the hospital for several days. But after that he managed to stay healthy. Sometime between January and February one side of Patrick’s central line clotted and the transplant team opted not to replace it. We celebrated the 5th anniversary of day we were sealed as a forever family in the temple by going out to dinner at Brick Oven Pizza buffet, an odd choice for a kid who can’t eat cheese on his pizza, but Patrick was going through a breadstick phase and so we all enjoyed the meal. The we snuck over to walk the Jordan River temple grounds, the first time health and schedules allowed us to do so on our family forever day.

March – We started working with Palliative Care at Primary Children’s somewhere early in this year. It’s a team that specialized in keeping patients with chronic or terminal conditions comfortable and helping caregivers to plan ahead and then be able to make difficult choices as medical care gets more complex. One of their top priorities: get Patrick a wish. So, in March we started working with Make-a-Wish. We visited the Utah Headquarters and Patrick got to use his special key to enter the wishing room and send his key to the wishing wizard. Patrick wished to go to DisneyWorld. We made wishes, too. Several grandparents wished he’d receive his transplant. In the back of my mind I thought, “Yeah, but that may not happen in time.” My wish was that he get all he hoped out of life.

April – This spring, my baby sister decided to get married. And she asked if she could hold the wedding in our back yard. So most of April was spent whipping the yard into shape. We have never planted so many flowers, laid down so much mulch, fertilized so often. Brian had a busy month of work. Their development team from the Ukraine came to visit for a week. And then, not much later, he left to attend a conference in San Diego. I got a flyer about mommy and me classes at the YMCA and Patrick and I started attending. We were often the only family there, besides the teacher, but we really enjoyed the time together and made some very dear friends. We also decided that wedding was the perfect excuse to remodel our cramped, outdated, and slightly rotting kitchen. On Easter weekend, the kitchen was gutted.

May –   We turned the basement wet bar into a makeshift kitchen. I learned tricks with a rice maker and a crock pot and a microwave and a grill that I’d never learned before. Between the yard and the kitchen, we made so many trips to Home Depot that Google’s cell phone tracking on my phone decided I must work there. Patrick had to spend some time out of school sick and so we also spent a lot of time snuggling on the beanbag chair in the basement. At the end of May, Brian went to New York to attend a “hack day.” In other words, a programming competition of sorts.

June – Patrick graduated from preschool. Our kitchen was finished. The wedding came out better than I’d dreamed and we welcomed Tedd into the family. Patrick immediately fell in love with him. I’d taken such good care of my garden that I harvested lettuce and spinach successfully for the first time. I started summer Mommy School, a weekly home school curriculum. We also started attending “lunch park” at the elementary school next door with some encouragement from our friends at the YMCA. Patrick was allergic to most of the food served there, but the chance to go sit on the lawn and eat with the other kids in the neighborhood, to let him make some friends. That was priceless.

July – Brian bought a book of Utah hiking trails and we started spending as many weekends as possible hiking as a family. In the hard stretches, this meant Brian carrying Patrick on his shoulders while I huffed and puffed my overweight asthmatic self behind them. But it was wonderful to be out in the mountains together.  Patrick and I also frequented libraries and parks. I got free museum passes and we visited all the museums in Salt Lake City at least once.  We full-filled a lifelong wish for Patrick and bought him a ride on car that we spent the rest of the year following him around in. He also mastered riding a tricycle.

August – I talked to Patrick’s transplant team about scheduling his annual checkup since it would be a year since our last visit in September. Patrick’s clotted line had developed a hole and needed repaired so they decided it would be best to replace the line at this visit. Not wanting to interfere with school, I asked them to schedule us early and we headed out to Nebraska a couple of weeks later. They were able to replace Patrick’s line without problems. We opted to turn the trip into a family vacation and drove to Nauvoo, Illinois, a very important historic site for members of the Church of Jesus Christ of Latter-Day Saints. (The site of a very large early Mormon city.. the last they lived in before mobs forced them to move west to Utah.) I crossed an item off my bucket list. Patrick weathered well a nice long roadtrip across Iowa with the company of his imaginary friends, Daniel Tiger and Prince Wednesday.

The rest of August was a crazy busy. Brian spent a week in Georgia learning how to create android apps (and ziplining). Meanwhile, I made a mad scramble to get everything pulled together for Patrick to be ready to start school.

September – Patrick started kindergarten. Thanks to years of preschool and the extra cramming of summer mommy school, he started at level with his peers. He was blessed with amazing school staff who adapted their teaching to help him continue to progress. They also worked to teach his classmates to be accepting of him and, one step further, Patrick made several friends in his class. We started the month by taking Patrick camping for the first time, in a cabin. Unfortunately, a g-tube leak in the middle of the night led to an infection that landed him in the hospital and he had to miss the second week of school.  Patrick also had testing that confirmed all his same allergies. He started attending group therapy to work on social skills. And he became the proud owner of an adaptive stroller/wheelchair.

In mid-September, Make-a-Wish threw Patrick a surprise party to let him know his wish was finally being granted. They invited all of his friends and family and hired an ice cream truck. We left on our wish trip at the end of September.We stayed at Give Kids the World. They gave us tickets to Universal Studios and SeaWorld as well as DisneyWorld. We played from the moment we woke up till the moment we fell asleep. It was magical.

October – Because of district budget, Patrick got a new teacher at school. She was also amazing, too. To help the transition, and because it’s my dream job anyway, I got to start volunteering in the classroom at school. I was invited to attend a research planning conference in Washington DC in mid-october as a parent advocate to talk about how research could help solve the problem of lost central line access. It was the first I’ve left Patrick overnight (except when he was in the hospital.) It was strange but good to get out and be myself and a grown up for a few days. We attended some early halloween parties and I helped throw a halloween party in Patrick’s class.And then, on the 30th of October, we got a call that they had found a donor for Patrick. He received his transplant on his birthday, October 31st.

November – November was devoted to recovery. Patrick flew through the usual post-transplant obstacles. He made it out of the PICU and off of IV feeding in record time. However, right before Thanksgiving, that early progress backfired as his lymphatic system was leaky and he got a type of fat leaking around his lungs. He had to have an emergency chest tube as his lungs were collapsing. He was doing better until his stoma healed too tightly and had to be revised. But, with a change in formula and a quick revision surgery, he sailed through recovery again.

December – Brian had to go back to Utah to work and he spent the month trying to catch up work and to get Christmas ready. Meanwhile, Patrick was discharged from the hospital on December 8th. We moved into the Ronald McDonald House where we enjoyed a Christmas season full of gifts and cards from home and watching the generosity of others but without the bustle of other Christmas preparations. We learned a new medical care routine. We tried adjusting to the side effects of Patrick’s new medication. We made Christmas crafts with friends. Brian and I celebrated our 11th anniversary apart. But, a week later he came back and we celebrated together. We enjoyed a different but amazing Christmas where we were showered with love by friends and strangers.

And then, right at the end of December, Patrick’s stoma prolapsed and landed him back in the hospital. Offered the chance to take it down, we did. And therefore, we spent New Years’ Eve this year in the hospital. Patrick and I passed out in exhaustion right around 11 p.m. Brian waited up and rang in the new year.

 

Mrs. Hoopes Goes to Washington

**Disclaimer: I know you all want to read about our much bigger news. However, I had this post all but written before I got busy with Halloween and birthday planning last week. So, I figured I might as well finish it up and hit post. I promise I am following tonight with other news, too.
IMG_2075
Our family did something that, for us, was completely upside down last week. I went on a trip. And I left Patrick home with his Dad. I recognize that this is not unusual in the world we live in. However, it is incredibly unusual for the primary caregiver of a home infusion patient to travel without them is very unusual.

Let’s start by saying that we survived. In fact, I think it was good for all of us.

A few months ago, I was invited to attend a research panel on the subject of lost Central Line Access. This came through a doctor who I had e-mailed a few times because of my support group and later because of the troubles we have had in placing a line in Patrick.

At first, the idea seemed a bit crazy. But the more I thought about it, the more important it sounded. Here a group of experts was gathering to help try to figure out how to research and solve the exact problem that is putting my son’s life in jeopardy. Why wouldn’t I take the chance to go meet them and contribute to the discussion.

Well, why, except that we’d have to pay my way and have Brian take time off to fill in with me while I was away. As we discussed it, we decided it was a really good idea for me to try to go. (Brian also thought the break would be good for me.)

So, last Sunday I snuck out of church early and headed to the airport. I got picked for expedited screening at the airport and made it to my gate in under 30 minutes. Then I looked around and thought “Well, how what am I supposed to do with myself?” Remember that usually when I fly, we spend something around half an hour in security alone, and then we have to repack bags, change a diaper, gate check our stroller, and make arrangements for early boarding. Oh, entertain a very active child while keeping his IV tubing safe.

That Sunday was one of the longest and quietest in my memory. I read books, watched movies, played video games, sent e-mails, checked on Facebook, worked on a birthday video and still had time to spare. I finally made it to my room, called home, and then went to bed a little after midnight.

Morning seemed to come too early, but without anyone else to get ready, I was still dressed and ready with time to kill.

The panel itself was amazing. I tried taking notes, decided writing was too slow, switched to a computer and filled 12 pages. I learned so much about what might cause patients to lose central line access. I am itching for this panel to bring forth fruit in the form of better understanding of how to keep patients from losing central line access quickly the way that Patrick did. I can’t go into details about the research plan that was decided upon.. but I can say that it is a huge but simple step that could lead to so much better understanding, and with better understanding comes better care.

It was also an amazing experience to be in a room filled with these brilliant medical minds. I got to sit with and get to know better many of the people responsible for designing and manufacturing central lines. I came home with a stack of business cards and am already working on hopefully becoming a little bit more of a patient advocate in this area.

And then, when the conference ended, I took a cab into Washington D.C. I spent the evening and morning playing tourist. (Only getting myself lost a couple of times and never irreversibly) before time to come home.

On the flight home, I sat next to a talkative man who had been all over the world. We compared travels and experiences and opinions. When we landed, another man asked me what my career was that allowed me to be so well traveled. When I told him I was a stay at home mom of a special needs child his jaw about hit the floor. For some reason, that gave me a bit of an ego boost. I think I sometimes feel like I disappear a bit in this important but unlauded role.

Being away from Patrick and Brian was an eye opening experience. I think it was for them as well. I think we all like our roles. (Though, I’ll admit, it was hard to come back home and dive right in.) I think we can go several more years before sending Mom away on another big trip. But it was really fun to stretch my wings and remember what it’s like to be just me for a while.

 

Mom’s Wish Trip Recap

I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.

It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.

I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.

And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.

Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.

I could tell you how amazing it was to receive the same magic treatment at each theme park, too.  We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.

And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too?  Yeah, sometimes we parents do crazy things for our kids.

Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.

We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.

Brian didn’t tell you much about the last days of our trip.

We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.

Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.

It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.

Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.

Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose.  He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.

Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.

We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!

It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.

It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.

Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.

Here are some pictures taken of us by Give Kids the World and Disney.

 

Granting a wish.

Patrick has been learning about Disney World.  For a time when asked where he lived he said Disney World.  Patricks wish granters would send a package every once in a while to let him know that it was still happening.

A few months ago we got the dates for the trip.  There was a lot that needed to happen between then and the trip, so it got put off in our minds.  We had a trip to Omaha, I had a business trip, Patrick started Kindergarten, and we had an attempt at camping (gee most of those should be blog posts, I’ll see what I can do about that).  A few weeks ago we got a call from one of Patricks wish granters Beth, she told us that they were working on planning a wish granting party.  Something to tell Patrick that his wish had been granted, and he was on his way.

About a week ago we got details of his wish granting party.  And started inviting family, and close friends (sorry to those that didn’t get invited, the group was fairly large and we didn’t think it would be right to go larger, we still love and appreciate you).

We had coordinated the details with Beth.  We would send Patrick to the neighbors, the guests would come, and then we would surprise him, and then an ice cream truck would come as the cherry on top.

As with all things in our life, things change.  Emily started exploring some new therapy for Patrick yesterday.  They said great would it be possible to come tomorrow afternoon.  This caused our plans to change a bit.  The new plan was that I would come home early and meet everyone, help Beth and Natasha setup and then Emily and Patrick would arrive home from therapy to a group of friends.  With the contingency that if they got back too early they would play at the neighbors.

I got home from work early thinking I needed to help clean the house.  Cleaning the house with Patrick around is sometimes an effort in insanity.  When I arrived home Emily had the house in great shape.  I sat down and read for a while.  Then I decided to grab some chairs.

As I got outside Beth pulled up with balloons.  We tied balloons around our front yard.  Guests started arriving.  Natasha arrived with more balloons, which made things look all the more festive.

The majority of the guests arrived, and I texted Emily to let her know we were ready.

Patrick was taking in all his guests at his surprise wish granting party.
Patrick was taking in all his guests at his surprise wish granting party.

A few minutes later Emily pulled into the drive way.  Patrick looking out his window noticed we were all there, and started grinning.  Emily reports that Patrick saw everyone and yelled, “Hey! Why everyone here?” Then, grinning ear to ear and climbing out of his seat before we were even parked, “I want talk to them!”

Patrick got out of the car as fast as Emily could get his door open.  Ran to the driveway and just grinned.

He saw the present that was waiting for him on the porch and ran to it.  Beth cut him off, and presented him with a certificate stating that his wish was granted.  Then he resumed his quest for the gift.

He pulled all the things out of the gift bag, and around the corner comes music from and ice cream truck.  It stops at

"You are officially granted your wish"
“You are officially granted your wish”

our house and Beth leads him over to the truck.  Emily got there just in time with Patrick safe (soy) ice cream.  Patrick was more fascinated with the van than the ice cream, but none the less it was a hit.

The rest of the evening was spent with everyone getting ice cream, and Patrick running from person to person hugging and saying hi to them.

Then Beth let him play with her car (big points from him).  And she led him up and down the street naming all the car makes, which is one of Patricks favorite games.

I pulled Patrick aside and told him we were going on a trip on Sunday, and that we were going to go to Mickey’s

Presents!
Presents!

other house (he’s been to Disney Land a few times).

The night was great.  Big thanks to those who came.  Even bigger thanks to our wish granters Beth (and her husband Tim who accompanied her tonight), and Natasha.

We are super excited to go on our adventure.

The ice cream truck came just for Patrick.
The ice cream truck came just for Patrick.

 

The left overs of the balloons. Each child took one home as well.
The left overs of the balloons. Each child took one home as well.

Wishing a wish.

So its been a long while.  Happily we can say that Patrick continues to grow and progress.  It is an understatement to say that he keeps us busy.  I guess in this case you can say no news is good news.  I’m going to try to pick up the blogging duties for a bit.  We’ll see how that goes.  You will soon find out that Emily is the writer in the family.

To understand this post we need to go back a year.  A year ago about this time we were in Omaha hoping and praying that the docs there would be able to place a new central line.  The docs here did their best but we unable to place a central line that would work for transplant (still love and trust the docs here).  Every once in a while we have moments that remind us just how fragile  the balance we have found with Patrick is, this was one of those moments.  The docs in Omaha were able to place a new line, but were quick to remind us that he is more or less out of central line access, and line placements were only going to be harder.

We decided that it was time to explore Make-A-Wish for Patrick.  This is something that we discussed off and on since Patrick was very little.  We had decided that he wouldn’t understand how special his wish is and wanted to wait as long as we could.  The opposite of that is if something were to happen to Patrick we would regret not giving him the experience.  The experience told us that it was time to explore things.

We we got home from Omaha, it was the start of the school year, and there was a lot going on.  Emily got in touch with Make-A-Wish early this year.  We followed the process, and waited to hear.  In early March we were notified that Patrick would be able to make his wish.  We were to bring Patrick and a small group to the wishing room to make his wish.  Small group was interpreted to grandparents.

We received a key to the wishing room in the mail.  Patrick was (and still is) fascinated with keys and cars.  We ended up hanging the key on the wall so he knew it was there but could wander around with it (and probably lose it).

Finally the day came.  We took the key down from the wall.  We met his wish granters for the first time.  Wish granters are volunteers whose priority is to make sure that we wisher is completely spoiled.  They are also our interface with Make-A-Wish.  Our wish granters are Beth and Natasha.  Who succeeded in making the day special for Patrick.

Patrick throwing his wishing token in the fountain at Make-A-Wish.
Patrick throwing his wishing token in the fountain at Make-A-Wish.

We gathered as Make-A-WIsh and got to know our wish granters a little, and then we went on a tour of the building and the grounds.  They have gardens that are open to all wish families, kinda as a place to go to remember the memories made (jut the thought of this has my heart heavy).  We threw a token into the wishing fountain.  At least Patrick did.  Emily and I kept our tokens, we’ll go wish when the time is right.

Patrick took the opportunity to run around the gardens, over the bridges, and any where else he could think of to go.  I tried to reign him in, as I’m usually the strict one.  The wish granters didn’t bat an eye about letting him be out of control for a while.

Our tour took us upstairs.  They showed us where the wishing room was, but before that each member of the group was given a little slip of paper.  We were asked to write a wish on it for Patrick.

We also got to help Patrick decide what his wish was.  We had to push him in a direction, but we were pretty sure that he would love the experience at Give Kids The World (http://www.gktw.org/index.php) and the attractions in Orlando.  We have heard magical things from other wish families about GKTW.  I must admit that it was hard to not have him know exactly what he wanted, maybe that means we have spoiled him too much.

Opening the wishing room.
Opening the wishing room.

Finally the time came to go into the wishing room.  We got out his key and went to the door.  I helped him open it.  It opened into a circular room with glass floor.  In the middle was a waterfall that went from floor to ceiling.  Quite the awe inspiring room.

When we all got into the room we each read our wish for Patrick.  What a touching intimate thing.  To have his parents and grand parents each share a special wish for him.  Tears were shed, but it was a great experience.  We have those sheets of paper, they will be memories for a life time.

Following the path to make his wish in the wishing room.
Following the path to make his wish in the wishing room.

Finally the time came to make his wish.  The room went dark, and spots on the floor lit up to show Patrick the way.  I helped him go from colored spot on the floor to colored spot on the floor. We finally made it to the wishing spot.  Patrick put his wish in a tube, and then put it in the wishing stand.  His wish was made.

Then we went and had doughnuts and cupcakes.  Two things Patrick was into at the time.  Emily and I got to fill out paperwork.  And Patrick had fun with the personal attention he was getting.  Because Patrick runs a high risk of dehydration in the summer heat we asked that his trip be scheduled for the fall.

Sending his wish to the wishing wizard.
Sending his wish to the wishing wizard.

His wish was made, now we just had to wait until it was time to go.

Wish made.
Wish made.

Summer vacation

Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.

Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.

Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.
Our first day of Mommy School. Learning the shapes of letters by building them from playdough.
A practical life mommy school lesson on how to sweep.
A practical life mommy school lesson on how to sweep.

And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.

Teddy Bears
B is for Bears, and a teddy bear picnic.

The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall.
Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.
In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.
In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.
I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond.
Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.
The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.
The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page.
I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.

Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.

So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.

Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.

So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.

Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.

Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.

And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.

Builder Patrick

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time
I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.

Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.”  Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?

The end of another school year

Patrick woke up crying this morning at 6. Not just a little “I’m sleepy” cry. Out and out sobbing. When I asked him what was wrong, he replied “Push!!” “Push what?” I asked. “Push TAMMY!” He answered.

And I understood exactly what he meant.

“Push Tammy” is code for “I fought with my classmates at school again.” This time it was a dream. But it hits on a really real fear and a very big problem that I’ve been so baffled and busy with that it’s kept me away from this blog for quite some time.

This has been a hard school year for Patrick. My sweet, friendly, optimistic little boy has felt stressed and discouraged and just plain rejected. It was bound to happen one day that his medical issues and his developmental delays and his just-plain-awkwardness would catch up to him and cuteness wouldn’t carry him anymore. At least it started in his last year of preschool with a teacher who knows him and is OH SO patient and willing to adapt and help.

Patrick’s frustrations have manifested themselves in a lot of hitting, pushing, and kicking. Usually it’s subtle and small. Sometimes it’s angry. Some would say we’re lucky that he’s perfecting the art of the tantrum this late in life. The problem is that at age 5, it’s a whole lot more frowned upon. And it certainly is costing him friendships.

So, if you’re wondering what I’ve been doing since I wrote about the IEP meeting last fall.. I’ve been volunteering in Patrick’s classroom, advocating for a behavior plan and better support for him at school, trying to find a good psychologist and then trying to implement what she’s trying to teach me to do.

I’ve also been being humbled a lot as I realize how far I need to go still in developing patience, self-control, long-suffering, flexibility.. and on and on…

Oh, and watching a lot of Mister Rogers and Daniel Tiger’s Neighborhood. Because they teach lessons both Patrick and I need to learn.

Now – why am I telling you this? Well, because I am really hoping that I can spend the summer blogging about how Patrick and I are having wonderfully fun adventures together as we explore the alphabet. Patrick’s got just a few days left in preschool. 

So if I tell you now about this struggle, maybe I’ll stop worrying about how to tell you about this struggle and can get on with writing about our lives, imperfections and all.

The rest of today didn’t exactly pan out much better. Patrick’s nap got delayed because of our kitchen remodel (subject for another post soon).. and then I had to wake him early for speech therapy. And he was so tired that he fell asleep in the car for the first time in a year. And the he wouldn’t talk to his speech therapist and threw the flash cards she was using on the floor again. And when that was done, we took him to the zoo to see the new lions. And I’m not sure if he had a good time or not, because he was so sleepy he only cared about pushing the stroller (a tendency his psychologist calls a perseveration, which means something he gets stuck on obsessively). And when we would take it away, it just plain made him mad. And he tried tantrums, and we tried not to give in to tantrums… But when I reminded him he needed to calm down, he took a breath and counted to 4, then asked again in a nice voice. That is actually really good progress for him, and for me.

 

My little photographer

This weekend, we took a short family getaway. My smart husband saw a deal on a cabin in the woods right as he went to leave for the Ukraine a couple of months ago. (You know, before everything hit the fan) and tasked me to pick a weekend.

IMG_5587

Little did I know when I booked that the Uinta Mountains would be hit with an unseasonably early snowfall. Still, we trusted in the warm cabin, and packed and went.

Getting there was a bit crazy, as we squeezed in an eye exam and speech therapy before we left town. But the trip up was peaceful, despite falling snow. We met one of our favorite Short Gut families for dinner on our way through Evanston, Wyoming and then arrived and settled into our cabin just on time for bedtime.

It was so peaceful to sit by the fire, snuggled by my husband, watching the snow fall and the end of a football game. And then, well, the rest of the night wasn’t as peaceful. Patrick didn’t sleep well and was up early, early in the morning.

IMG_1186

The snow meant we had to cancel our plans to explore the mountains by ATV and we had to settle for a drive in the car instead. Still, despite the rough start to the day, we had a really nice day out. The mix of autumn leaves and nearly a foot of snow made for stunning scenery. The free range cows preferring to move along roads to avoid snow broke up the drive. And we enjoyed some yummy pizza for lunch before heading back to the cabin. (They even made Patrick a crust-only pizza that, once convinced to try it, Patrick sat and ate for half an hour.)

IMG_5542

But for me, one of the highlights of the trip was Patrick discovering my camera. Brian loves photography and with the amazing fall/winter scene, we stopped to take pictures along the way. To keep Patrick entertained in the car, I offered him my camera when we stopped. Before long, I was following along behind him as he sought out the perfect picture. (Just like his Daddy.) It made his day and I find it quite entertaining to see the world from his point of view.

IMG_5563

I hope you enjoy his work, too. (The rest of the pictures in this post were taken by Patrick).

Looking out the car window
Looking out the car window
There is a whole series of pictures of Patrick's feet when he didn't realize the camera was turned around
There is a whole series of pictures of Patrick’s feet when he didn’t realize the camera was turned around
Provo River Falls
Provo River Falls

 

Mommy
Mommy
Looking up at the trees
Looking up at the trees
Daddy taking pictures at Provo River Falls
Daddy taking pictures at Provo River Falls
"Green"
“Green”
Mommy (with some help from daddy to get Mommy in the frame)
Mommy (with some help from daddy to get Mommy in the frame)
View from our cabin window
View from our cabin window
A selfie
A selfie
The time out chair
The time out chair

Trees behind our cabin

Trees behind our cabin