Category Archives: Family Fun

Dear Laura

This morning, I got a concerned Facebook message from a woman I’ve never met, but who knows one of my friends and apparently has been following this blog. I haven’t been writing. She was concerned.

To all of you, friends, acquaintances, and family, especially those who have relied on this blog for updates.. can I say I’m sorry? This has been a growing year for me personally and I haven’t been writing because I’ve been busy with a lot of things.

Proof we are still alive.

The short version is this (and I really need to devote a post to this topic)… I went to a doctor in December and learned that 8 years of full-time caregiving and saying “I can’t take more care of myself. I’m taking care of my family” kind of all came together into one disaster for my health. I discovered I had high blood pressure, overweight, out of shape, one seriously messed up knee, and was borderline prediabetic.

This may sound like bad news, but really, for a long time I put myself last. And this was just the nudge I needed to recognize that if I wanted to continue to be the kind of mom I wanted to be, some things needed to change. So I started working with doctors and a physical therapist. I got a gym membership. I started tracking what I ate. I got started meds for blood pressure. I pushed for asthma testing, got diagnosed, and started taking medications to bring that and allergies in control. I discovered kinesiology tape tape. I kept up with regular counseling because this was a serious blow to my ego and I had a month where I tangoed a bit with anxiety and depression. I gave myself tennis elbow. And tendonitis in several other ways as well. I adopted the motto “Pain is temporary. Quitting is forever.”

And after a fair amount of time and effort, I’m happy to say that I’m making some progress. I’ve lost some weight (more still to go) and kept it off. Most of those health issues are considered well managed. I’ve been hiking and biking and swimming and playing on the trampoline with my family in ways I haven’t been able to in a very long time.

But learning to take better care of myself has been a learning curve and it often didn’t leave me much other time.

Meanwhile, though… life went on. And in the short version, here are a few of the highlights.

In spring:

We went to Disneyland. Because we are seriously addicted. It was spring break and far too busy and I’m not sure I’ll ever choose to go during spring break again. Highlight of the trip for Patrick was meeting Doc McStuffins. Though he pointed out to us that she was too big. And couldn’t talk. Highlights for the grownups: We went on a foodie adventure and tried several secret menu options. Mac and Cheese in a breadbowl proved too big for any of us to eat. But the cinnamon roll at the Starbucks inside of California Adventure was delightful! And the World of Color Dessert Party was more than worth it.

We tagged along with Daddy on a business trip to St. George. We surprised Patrick by taking him to visit Pioneer Park, a state park full of Utah’s trademark red rock formations. He was upset the park didn’t have a playground. Then he surprised us by absolutely loving climbing the rocks.

We discovered and signed Patrick up for an adaptive baseball team. In adaptive baseball everyone fields, hits and runs. You can use a tee or they’ll pitch to you until you hit the ball. There are no strikes. There are no outs. You play at least 2 innings per team. More if you’re having fun. Or you can quit early if everyone is cold or tired. Everyone cheers for everyone. It is, perhaps, my favorite form of baseball ever. Patrick loved his uniform and his coaches and his teammates. He hated fielding, but kind of liked tracing letters in the dirt. He tried to learn to throw the ball in fancy ways and ended up with a crazy windup the always landed the ball behind him. He got a little bit better at hitting off the tee. And then, like nothing.. the season was over. We had a great time. And will certainly be back next year.

Patrick wrapped up 2nd grade with a fair amount of success… stronger in reading and finally making progress in math. He had an amazing 1:1 para for the 2nd half of the year when his previous aide got promoted. She brought out the best in him for sure.

In summer:

The bishop went on vacation for a month, leaving Brian in charge. That was a fun adventure. Patrick helped housesit there and also for another neighbor.. and we learned that he is a REALLY good housesitter. He’s not quite tall enough to get all the mail from the mailbox. And he isn’t strong enough to pull a hose around. But…He NEVER forgets that we need to pick up the mail or water the lawn. And he’s not afraid to ask for help. He earned a little bit of money doing it and used it to buy some toy cars and a fidget spinner.

Our ABA provider completely and totally screwed us up. We’d assumed that Patrick could get into their treatment center for summer services, then were told he couldn’t, then were told he could. And then, after a lot of back and forth and spotty service for the first month of summer, finally provided us with the right medical forms. Only to read them over and decide they didn’t want that liability. So I ended up with a lot of unexpected 1 on 1 time with Patrick. We got a museum pass and did our usual tour of museums and zoos, etc. We played with kiwi crates. We worked in dollar store workbooks. We practiced some educational computer games a lot. We got through, but it was a pretty messy and disorganized start.

I signed Patrick up for adaptive swim lessons. With no central line, this is now a possibility, and Patrick really needed somewhere to go and some help with his fear of water. His mom really needed a way to keep exercising and a minute of respite. Thankfully, he had an amazing teacher who was totally fine with me swimming laps while she taught him. And he got brave enough by the end of the summer to float, dunk his head under the water, blow bubbles.. and he was working on learning how to move his arms to swim.

Also, as a summer highlight… we bought a pass to the local amusement park, Lagoon, and Patrick and I spent several days up there over the summer. They would totally burn him out. We’d leave with him starving. He’d down an entire Arby’s kids meal on the drive home and then fall asleep for hours. He loves the rollercoaster, the small ones. He loved riding kid rides without me. He loves bumper cars. Or any cars really.

Our motto of the summer was “I can do it myself” and Patrick did make some great progress in learning to heat up simple foods in the microwave, get the mail, water the lawn, play in the neighborhood, fold his own laundry, clean up after himself, write more neatly and on and on. He grew a lot!

Oh, and one other summer highlight. Thanks to our awesome respite provider who is a teacher and had extra time because it was summer, Brian and I took a weekend getaway to San Diego. Just because. We slept in every morning. Played tourist and foodies. Even pulled of tickets to a baseball game. 3rd row on the 3rd base line.

And then, in fall:

Patrick survived his first overnight camping trip. There was some ice, but officially we didn’t hit freezing.

Patrick started 3rd grade. He’s now the old kid in his class. I think the 2nd oldest by 3 days, if I remember right. They had a bunch of 1st graders start this year. Half the class is tiny. Half the class is big like Patrick. He’s not used to being the big kid and the first couple of weeks he would just reach a breaking point shortly after school, yell, throw, and then collapse in tears at the frustration of having to hold it together and watch out for the little ones.

First Day of 3rd grade

His amazing aide got a great job offer a week before school started. That didn’t really help things. The first week, I tagged along and helped at lunch at the school. (And especially the first day when they had a class full of brand new kids and an eclipse viewing party to try to pull off safely.) By the 2nd week ,they had hired a new aide. And she’s really been kind of amazing for him. She’s older that his other paras have been. Which is kind of nice in that she’s not as afraid of getting in trouble for advocating for him. She’s really been quite kind and attentive and helpful. And she has really taken to the task of helping his eating. She asked for a menu of what he could purchase at lunch and has him buying and eating boxed ham and turkey sandwiches on wheat bread. He ate a whole banana for him a couple of days ago! This is perfectly timed as a summer of swimming caused some weight loss and the dietitian wasn’t exactly happy with me for it.

Also, I started a new role as PTA treasurer. This has been a much bigger and busier job than I imagined. But it’s also been good for me in a new world of not always putting myself last. I mentioned to Patrick’s teacher that I used to do bookkeeping. She looked at me and and said, “You used to do a lot of things.” And she’s right. I did. I had a lot of years single and then more years married without kids. And I did a lot of things. Now that Patrick’s health is better, it’s fun to be doing some of those things again.

A favorite way to spend an afternoon. Lining up cars & watching TV

I’ve kind of dived in full-time as a volunteer. PTA (which is settling down now that we are past the start of the year a little.) Still volunteering with reading groups. Primary music in the children’s sunday school at church. And in this past month, I’ve been asked to be Patrick’s cub scout leader. That’s another thing that happened this fall. Patrick earned his wolf rank. So he moved into the bear den a month early with me. We’ve done neighborhood cleanup with garden tools, woodworking, and pocket knives so far. Wednesdays are crazy. But I love being a scout.

Patrick’s settling in at school. Reading 100 words a minute. That’s not counting the random words he’s picked up from his scripture study. Like abominations (pronounced “abominable nations” by him.)

I threw a fit and got all new ABA providers and that has helped a great deal. I feel like he’s making progress on most of our goals there.  He wrapped up an OT session and is diving into PT again with focus on learning how to throw, catch, bounce and dribble a ball. So far, his schoolwork is almost all review and far too easy. And he’s really becoming quite grown up and and helpful around home. I love hearing his thoughts.

Anxiety has been bad for him of late. He started stuttering over the summer when he’s nervous about what he’s saying. So far everyone tells me not to worry and he’ll outgrow it. His fear of rims without hubcaps has reached a peak and I sometimes have a hard time helping him be brave enough to walk past school buses at the end of the day.

I’m hoping it’s just the start of school and the difficult memories fall weather can bring.

We’re headed for his 3rd annual post-transplant checkup in a few weeks and I’ll try to update on that soon.

And in the meantime… well of course we had to go back to Disneyland last week. This time’s highlight? Brian went to Disney Institute, a leadership training workshop.. for work. We got to stay in the Grand California hotel. Which mean walking out of our hotel straight into either downtown Disney or California Adventure. It was a treat to just return to the room if we forgot something or were tired. Also, as Patrick just discovered a love for the Toy Story movies, and since Brian was travelling ahead, we sent a Buzz and a Woody doll ahead with daddy that were waiting in the room when we arrived. Patrick had a happy little Toy Story binge in Disneyland.

Patrick has entered a new phase for rides. While he still loves his roller coasters and the Small World.. he also discovered the storybook rides. Peter Pan. Mr Toad’s Wild Ride. Pinocchio. That he couldn’t stand before. We discovered this at the end of our last day, alas. But it means some different experiences next time I’m sure. Also of note, we made him ride Splash Mountain. (He loves the log flume at the park near home.) That was a little scary. But we all survived.

Anyway, dear Laura… and our other family, friends and followers who have wondered where we went this past year and what we were doing.. that is what is happening. I haven’t been this busy since before we adopted Patrick. I’m not used to it. I’m used to surviving and being trapped in a hospital or at home by health issues. I’m not used to meeting deadlines and being places when I promise. I’m used to having to always cancel plans, not making and keeping them.

Hopefully I’ll get better at this with time. But for now, just know that we are ok. And if I’m not finding time to sit down and write, it means that we’re not quarantined, not in a waiting room, not hospitalized. We’re out and living. And we’re not very efficient at it yet.

It’s great to be 8!

On Monday, Patrick will be celebrating his 8th birthday. 8! 8 whole years! And 2 whole years since his transplant!

I’m working hard to pulling together his birthday video. We’ve had a big and busy fall so it’s going to be a little late this year. But it’s just astounding to see how he has grown in the past year. In every way.

The year after transplant, Patrick’s body was shocked and he didn’t grow. But this year we can barely keep up with his clothes. We upgraded him from the only bed he’s ever known, one of those crib-bed combos, because he had gotten too tall for it. His clothes are a medium now and he’s in that awkward size 13 shoe that’s right between little and big kid styles. He is just inches below my shoulder now. And honestly, sometimes I turn around and am surprised to see that he is still small because he feels so big.

He’s grown a lot in spirit, too. For the time being, we have hit upon the perfect mix of medications for his ADHD that keeps him calm and focused while still letting him be his boisterous self. (His psychiatrist warns me he will outgrow these doses soon, but for now they are working.) That has given him the opportunity to grow in a lot of other ways. To sit still and listen and understand. To have his own ideas of how to do things and then to stand up for them. He is becoming more helpful, more responsible, more patient.

IMG_20160222_175617

He is still the amazingly compassionate child we have always known who is endlessly concerned for the happiness of others. He is the first to give a hug when someone cries. He remembers others’ needs he heard of throughout the day in his prayers. He can tell you all about each of his classmates favorites. And he sees the best in even those who sometimes seem the most different.

IMG_20160719_130551

With glasses helping his vision, Patrick has grown into a voracious bookworm. He reads all the time. Bedtime reading time is non-negotiable and he’s often found on his bed looking at books. His reading fluency is growing by leaps and bounds. He reads everything to me. And is pretty darn good at spelling. His handwriting is really getting better which is very impressive in light of the fact that he is right-handed and his brain injury has left his right side fairly weak and uncoordinated. He doesn’t like math. But if he forgets to protest because he doesn’t like it, he’s even getting the hang of addition.

IMG_20160910_164955

We bought a trampoline last spring and Patrick can often be found in the backyard jumping. He went from not jumping evenly with both feet to starting to do jumping tricks. One of our favorite summer passtimes was to go into the backyard and alternate between jumping until he was too tired and reading Dick and Jane. He’s discovering joys we didn’t think possible like bike-riding and swimming.

IMG_20160721_190559

He earned his Tiger Cub Rank last month and most of the available beltloops. He’s excited to move on to Wolves and we hope he’ll be as happy and welcome in his new den as he was in the one we left. He had a wonderful experience at scout camp this summer. Patrick loves scouting and I love what it teaches about being a good boy and growing into a good man.  He is really trying to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent… and HUNGRY.

IMG_20160831_193316

We went to a Patrick’s annual follow-up appointment with his transplant team last week. They were so happy with what they saw in him. The first thing the surgeon said was “well he has changed since we last sawl him,” commenting on how tall and grown-up Patrick seems now. While Patrick sat on Dr. Mercer’s lap and took pictures on his cell phone, we reviewed his diet, growth and medications. With everything going so well, Dr. Mercer decided that Patrick may not still need steroids to prevent rejection. They gave us instructions on how to gradually wean him off of them and the acid controller that they have made necessary for him, too.

He gave him the all-clear for sports. (Adaptive baseball here we come, we hope?) And we decided it’s time to start planning to remove Patrick’s port. With things so stable, they think that he can soon only need labs 4 times a year. That makes the port not worth the risks. Still need to talk to the doctors here about how to go about that.

 

With so much growth, we faced a big choice for Patrick this year. In the Church of Jesus Christ of Latter-Day Saints, 8 is the age at which children are generally considered old enough (accountable) to be baptized. We believe that younger children are innocent and unable to sin and repent, therefore baptism is not required for them. Most 8 year olds are able to understand enough about the gospel, baptism, promises, and repentance (if not more) to be able to decide if they want to be baptized. Living in Utah, where the church is so prevalent, 8th birthdays are a really big rite of passage.

So we have been watching. And studying. And praying. And finally a few weeks ago we met with our Bishop to talk about baptism. By that interview, the answer was fairly simple. We decided that Patrick is still not at the same level as most 8-year-olds. Right now, he is still innocent. And so, for the time being, he will not be baptized.

For those of you wondering about the doctrinal implications of this, the Book of Mormon teaches:

Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them;

To be clear, Patrick has a very strong love for Heavenly Father and Jesus. Just this morning he refused to get out of the car because I’d forgotten to say a morning prayer and he wanted one. He wants to be baptized. And we believe that in a few years, he’ll be ready to understand and make that choice.

For those with logistical questions: Because we believe Patrick will someday be able to be baptized, we are not doing any replacement baptism celebrations. Those things can wait a couple of years so he can appreciate them. For the first time in his life, something can wait. He has years ahead of him so this is ok.

I’m going to throw in a separate bonus post about this decision, but in light of an 8th birthday, I thought at least this much should be answered for now.

Instead of 8th birthday traditions, we are going to do something that Patrick has rarely experienced in his life. We are going to have a plain old ordinary birthday. With terminal illness, then transplant, birthdays have always been a bit unusual. This year, Patrick’s school is celebrating Halloween today and not next week so he won’t have to share except for trick-or-treating. It’s a long weekend. We’ll have cake and present with family at Sunday dinners. We’ll go to an amusement park on Saturday so he can ride rollercoasters and drive cars. We’ll send treats to school We’ll decorate with a banner and balloons. I’ll make him his choice of dinners. And we’ll have cupcakes and sing to him and open presents. Just us. Just boring. It will be wonderful.

IMG_20160707_100018 (1)

Because he is wonderful. And we have been blessed with a little bit of ordinary. And for Patrick, ordinary deserves to be celebrated.

8 years, buddy! I am so proud of the boy you are becoming.

“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.

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.

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.

IMG_20150703_185812

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.

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.

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.

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.

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.

IMG_0024 IMG_20150501_094621 IMG_0027

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.

IMG_20150501_182159 IMG_20150501_182003

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.

IMG_20150501_173511

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.

IMG_20150502_183609

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.

IMG_20150502_203251

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.

image

Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.

image

They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.

image

I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.

image

The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
image

Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

image

And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015