Make-a-Wish anniversary and Star-raising ceremony

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

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

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

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

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

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

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

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

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

Checking in at Give Kids the World

Checking in at Give Kids the World

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

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

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

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

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


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

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


Decorating his star

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

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

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

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

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

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


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

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

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

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


First grade


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

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


Back to school shopping - breakfast date a Dunkin Donuts

Back to school shopping – breakfast date a Dunkin Donuts

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

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

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


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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A glimpse of Patrick's back during an allergy scratch test.

Outgrowing allergies and other updates

I reread what I wrote last night and realized that I got tired and stopped short of finishing telling you about our day. I didn’t tell you anything about speech therapy.

After being away for 9 months, we finally decided it was time to go back to speech therapy. We only just barely arrived on time, because we were coming from the meeting with the school. Thank goodness my sister had tagged along to help with Patrick or he would never have done so well.

But he DID do well. His therapist hasn’t seen him in a really long time and it was fun to see her reaction to his progress. Because speech is one place where Patrick’s progress is simply amazing. Being able to find car keys like a french pig finds truffles, Patrick found his therapist’s key on his therapist’s desk, brought it to her and asked “Do you drive a Volvo?” She laughed and said that he’d graduated speech therapy.

No, seriously though. He’s come a long way but is still struggling with things like pronunciation and verb tenses and sentence and word structure. She started doing some testing yesterday. It was amazing to see how far his receptive (listening) language has come. He flew through that test with all kinds of new words. Amazing how 9 months of netflix can expand your vocabulary.

The expressive language, though.. the one where he had to say what he saw in pictures. That wasn’t flying colors. And it kind of demonstrated what I have been seeing. Patrick knows words. But recalling them to say that, that is hard. It’s part of why he is always asking everyone their name.

We had a good talk about attention and ADHD and attention and steroids. His therapist said she has seen steroids really affect attention before. And that lack of attention causes trouble with memory. It all kind of fit. Not that I know what to do about it. But it fit.

So that was that. Now we just have to get insurance to agree to pay for speech therapy again.

In other big news, I got a call from Patrick’s allergist this morning. (After missing the appointment, they had him call me.) He went through the blood test and scratch test results pretty thoroughly.. figuring out what is safe to try and what wasn’t. He told me to be very careful with some newly diagnosed allergies: soy and tomato especially. And he also gave permission to try some cow’s milk with Patrick because all the tests indicate Patrick may have outgrown that allergy.

When I offered Patrick a piece of cow’s milk cheese, he was quite fearful. It took half an hour to convince him it was ok to take a small bite. He nibbled a couple more and then, after a few minutes when he saw he was still safe, he grabbed that piece of cheese and gobbled it down. No reaction. So, later in the day, I gave Patrick a piece of string cheese. He really loved that. He asked for another later on. And then he tried to get to eat only string cheese for dinner.

I nixed that plan but did try some pasta with cream of chicken soup in the recipe. Fail. He got spots on his face. No worse reaction. But too many ingredients. I can’t tell you if it was the dairy or the soy or something else. But we’ll need to be more careful before we try that again.

What a tricky balance. Introducing Patrick cautiously to foods to find out how he’ll react. And then, on the other hand, trying to make sure that he’s eating as many calories as possible.

We cut Patrick’s tube feeds in half last night. Now, he’s only getting about 200 calories over 4 hours. I think it will work. I think he can eat the target 1800-2000 calories easily. But not if I cook him dinner and discover I made him something unsafe. Tonight I ended up making a whole extra dinner for him. And yet, I still don’t think he ate his full calories.

if Patrick can maintain or gain weight, the goal is to switch to all oral food next month. Knock on wood. This wasn’t the greatest way to start today.

Today was kind of hard all around, though. And not just because my hot pad slipped and I burned my thumb cooking fish sticks. That just set me back.

But knowing that school had started. Seeing the school next door bustling with life. And everyone’s first day of school pictures on Facebook, and Patrick asking to play with friends who are no longer home. And then us.. just trying to find the right balance of work and entertainment to get us through yet another day at home. I’ve been doing this for almost 9 months now. I am exhausted. And it’s driving through the middle of nowhere and finally spotting a town and needing the restroom and then discovering that the restroom where you are is out of order and you’ll have to go across the street. Holding on those last moments when you thought you’d made it to the finish line, but the finish line moved. It’s hard.

I look around me and I see so many things that have been just waiting. Waiting for me to have time and free hands. But that’s not the time right now for me. And with needing to be a part of training, it might not even really happen for a while.

At least the day ended well. Patrick raised his start to the ceiling of the Make-a-Wish building tonight. Family and friends came. We took a tour and we ate some cake and we visited. Patrick was exhausted and crazed.

But it was a moving moment to see his star go up with the others after all. Even if he did do the fastest ever.

I’d add pictures but they are on Brian’s phone and my battery is dying so I’m going to post now.


Transplant Day 290 and the Back to School Meeting

Today was insane. Brian and I woke up before Patrick, a rare occasion, and were lying in bed talking (we’ve missed each other) when the power went out. And then, a few minutes later we heard sirens. And, well, we hoped it wasn’t but we suspected that a car accident had knocked out the power. We live in a quiet neighborhood, but it’s near some busy streets. And this morning, somehow a traffic accident took down two power poles. Across the street form each other. The power was out all day.

Not the smoothest start, but we pushed on. It was a big and busy day and I needed to make the most of it. So, after sending Daddy off to work, Patrick and I got ready to go do a little more shopping. We still needed some things for school to start. And then we hurried home to meet my sister.

i ended up with 3 big things scheduled today. An allergist appointment, a school meeting, and a speech evaluation. My sister Marcy agreed to tag along for the day to help keep Patrick happy while I did the talking that needed to be done. Patrick doesn’t like us to talk about him.

Well, we got to the allergist and went to check in and they couldn’t find the appointment. Finally they looked it up and told me that it wasn’t until the following day. I explained that I had come at the time told to me and that I couldn’t come the next day because Patrick was in school. They tried to find a way to fit us in.. but with other meetings we couldn’t swing it.

I was disappointed because i really want help sorting out these new allergy test results. They revealed new allergies. They also hint that Patrick might be outgrowing his milk allergy. And I don’t know what comes next. But it had to wait for another day.

We went and grabbed lunch and then headed to a park. Patrick was seeming restless. But we sat down to eat only to discover that Arby’s had put cheese on Patrick’s roast beef sandwich. And with no answers from the allergist, I had to pick out the pieces he could eat. Frustrating.

Anyway – Patrick made a friend and the time at the park was fun enough. And then we went off to meet with the school.

I can’t really describe what school meetings for Patrick look like. This one was packed. We had the teacher, OT, PT, principal, nurse, district special education liason, and two other very big district big wigs over special accommodations in the school. Plus Patrick, me and Marcy.

As I mentioned before, I had talked to Patrick’s teacher and nurse the week before. The teacher and I talked at length about medical accommodations. She was very worried because Patrick needs extra supervision at recess, lunch, and especially with the potty and she just doesn’t have enough adults in her classroom to help with that. Especially since they added 5 kids to the class since last I’d heard. I told her I’d been promised extra help and she asked me how far I was willing to go to make that happen. I started writing e-mails that day. And I got promises that the district would send help to the meeting. (Enter the district big wigs.)

When I talked to the nurse, again, when we started talking about medical needs he said that it sounded like we didn’t have enough support. I told him that we had been promised extra help from an aide and I didn’t know how to make that happen. I gave him some names that I had of people who had made decision and promises. And he said he’d make some calls.

Yesterday morning, I got a call from the district nurse who was helping with Patrick’s school transition. She explained to met that, in fact, she had helped request an aide for Patrick and told me the language to use to make sure that one was provided. And she promised to call around and find specifics.

And so today we sat down and i started to go over Patrick’s needs and I brought up the concern that there wasn’t enough support in the classroom… and the district special resources person told the principal that they had 22 extra aide hours per week for Patrick. Her response was a mix of frustration and relief. Glad for the resources but not so much for needing to produce this extra employee for school to start the next morning.  I can’t blame her for being upset. I’m upset that it took a meeting when I’ve been asking about it for a month. But I’m also partly to blame for taking so long to choose a school.

We went over medical needs. The nurse was really outspoken and trying his best to help. We talked about where Patrick should sit and lunch. (End of the table with friends with safe lunches next to him.) We decided we needed to set a time to train the classroom staff. Only with school starting, he didn’t think we could fit that in right away.  We decided to let Patrick come 10 minutes late to school and miss breakfast. I explained that hands have to be washed with soap and water, not just hand sanitizer which created a fuss about the bathrooms always being out of soap. I offered to provide soap for the classroom. And the district rep jumped in and said I couldn’t do that and promised to remedy the situation.

We talked about potty training. That was one of the teacher’s biggest worries. I don’t blame her. It’s a huge time commitment. Especially with Patrick. I guess there are two kids potty training which makes things even more complicated. Also, the private bathroom I was excited about turns out to be in the school’s “sick room.” I was SO grateful when someone else spoke up and said that wouldn’t work. Not sure that we actually ended up with a resolution, though. They talked about making the school move the sick room. They talked about offering to install a changing table in the bathrooms that are being remodeled, too. We decided to let Patrick wear pull-ups to school while we work it out.

We planned to hold a new IEP meeting in October, once they’ve had a month to get to know Patrick. And we talked about including or re-including some new things at that time like restarting physical therapy and calling in the augmentative team to look at some assistive technology for writing.

And then, after we talked about everything that needs to be done.. the idea was thrown out that Patrick maybe would be better off if he didn’t start school tomorrow. I didn’t know if i was relieved or crushed by that idea. Really, they aren’t ready. Really, I’m not ready. I have felt like I have been only halfway there this year. Not put together. Not giving him time to transition after all the craziness of travel. And so a few more days will let me make his backpack and his lunchbox cute and medical friendly. It will let me train the staff. It will let them try to hire help. It might give me time to figure out this new allergy questions. And to get Patrick back into a routine with eating and potty. It will let Patrick and I have a few more days at home to say goodbye to each other. And to really get him ready for the idea of school.

But I’m kind of sad. It feels kind of like when you’re on a road trip and you finally make it to a rest stop only to find out that the bathroom is closed and you’re gonna have to cross the street to the gas station. It’s only a little further, but it’s the longest, hardest part of the wait. I look around and see so many things that have just been waiting for me to get to them. And they will need to keep waiting.

I feel really bad for Patrick, too. On Sunday, all the other kids will be talking about starting school. And he will have been left a home. Again. He will miss the craziness of the first day of school. But he’ll have missed the specialness of it, too. He’ll be the different kid. The one who came late. The new kid. Again.

They asked if I’d like to come teach the kids about his allergies and immune suppression. I told them about the presentation I gave last year at the start of kindergarten. And I could see they liked the idea. So on Friday afternoon, I’ll be going in to introduce Patrick to his class. And then afterwards, we’ll meet and go over a behavior plan and schedule.

And then Monday morning, he’ll start school. I’ll stay and help the nurse train the teachers. And I’ll maybe stay to help a little more than that if they don’t have another aide by then.

And I know it’ll be good.

I think I’m just a little bit mourning normal. I want back to school to be exciting and happy. This just feels complicated.

But maybe having a few more days to regroup will accomplish that. And meanwhile, we have one last week with the girl who’s been doing Patrick’s respite. And we have a few sweet days where all the kids are in school and we might be able to sneak off and do something awesome without a crowd.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Lots of appointments and planning a new normal

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


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

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

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

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

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


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

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

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

Transplant follow-up appointment & diet changes

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

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

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

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


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

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

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

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

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

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

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

Choosing a school

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

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

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

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

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

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

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

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

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

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

I am overwhelmed and scared. A LOT.

We are going to register tomorrow regardless.

“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.


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.

Summer school and still planning for first grade

Well, as I mentioned in my last post, Patrick has started the extended school year program. Extended school year is a funny thing in our neck of the woods. I don’t know if it works like this everywhere, but Utah has such large families and our school district is one of the most established and biggest in the state so they are very efficient in what they do.. that, well, here you don’t get extended school year in your IEP unless you have a really darn good reason for it. I’ve tried in years past and was told that it really is reserved for children whose disabilities are so severe that they wouldn’t make much progress elsewhere.

I didn’t even imagine what that meant until this last week when I dropped Patrick off in his class. Patrick was placed in the amazing medical school in our district for the summer because he is still so newly post-transplant. Unlike the school that he’s been attending which serves children with medical needs but also the local community, Hartvigsen is a dedicated medical school for the district’s most severely disabled students. What an undertaking!

There are at least a dozen buses that bring students to this school. Their teachers and aides meet them and bring them to class. There may be fewer than a dozen crazy parents like me dropping their children off at school. (I prefer to do this anyway, but really had no choice if transplant medications were going to be given exactly as ordered and on time.) I was instructed to walk Patrick into his classroom. His teacher was excitedly waiting.

It’s possible he was the only student added to that class for the summer. He was also the only student who was verbal and not in a wheelchair.

I took a deep breath, a leap of faith, and kissed him goodbye.

Meanwhile, I headed over to the office for a meeting I’d scheduled with the district representative to talk about my concerns for his placement in 1st grade. The buses were late, so my meeting was late. And I got to sit and watch the students and teachers some into the school. And I saw Patrick come meet the office staff. He was very happy.

Now, about the meeting.. I know in my heart that he’s too behind right now to be comfortable just starting in a 1st grade class. But I also have just felt unsettled about the class they proposed putting him into.

So – we talked about it. She was amazing to listen to my concerns and express solutions. I told her that I am incredibly worried about him not being challenged if he’s only taught the goals that we come up with for an IEP. That he often surprises us by mastering things beyond the skills we think he’s stuck on. Sure, he’s struggling writing his name, for example, but I discovered that he can write about 60% of the rest of the alphabet with reasonable approximation.

I’m also very worried about him socially. I know that he behaves best, learns best, participates best and is happiest when he has friends. And so I’m worried that placing him in a class where he doesn’t have typical peers to socialize with.

And as I expressed these concerns, the woman I was meeting with mentioned that she wondered if he’d do better in a different self-contained classroom. They’d suggested that he be placed in a lower functioning classroom because of low IQ test scores. However, she said, there was another class where the students were closer to normal functioning, the class followed more of a typical class schedule, etc. She tried to describe the difference to me, and then offered to take me to tour the schools and classrooms (albeit without teachers or students) in a couple of days.

Tuesday, I had a much delayed appointment with the oral surgeon who helps keep me from grinding my teeth to bits and causing crippling migraines. So Wednesday was the next day I could. Meanwhile, Tuesday I happened into a couple of conversations that proved good reconnaissance on this issue.

For one thing, Patrick’s home hospital teacher, who he has clicked so well with and learned so well from, called to check in. When I mentioned the choice of classrooms, she didn’t falter. She said that hands down, the first placement we had been offered was too low-functioning for Patrick’s abilities. She offered to call around to some of her contacts in the district and then get back to me. And she did.. giving me some names and some specific behavioral strategies that she thought I should have put into Patrick’s IEP to help him. She hinted that she thought he should get into a typical classroom as quickly as possible, too, which made me falter a bit in my thinking.

Then, that evening, I had the chance to talk to a friend of mine whose son with autism is just finishing his 6th grade year in the higher of the two programs we had talked about. She only had good things to say about his experience at the school and we had a really good conversation about transitions and self-contained classrooms. It helped a ton.

I went into Wednesday morning pretty confident about what I wanted. We toured the lower classrooms first. The school was beautiful. I loved the layout of the classrooms. It’s only 5 minutes from home. And as we stood there, I told her that I was hearing from the teacher who has had the best results with Patrick that she didn’t think he belonged there.

Then we drove out to the other school. The one that sounded like the best fit. It was a long drive and kind of hidden in the middle of a windy-road subdivision. I didn’t love the classroom. At the second school, the self-contained classrooms are in portable classrooms, a.k.a. relocatables. The room seemed run down and bare. I could imagine Patrick cowering at the sound of rain on the roof. The classroom had steep aluminum steps and the nearest bathroom is inside the school building and I could just imagine Patrick having to go up and down them in the snow to go to the bathroom every couple of hours. The custodian was very helpful, answering questions about where the kids line up, where the buses arrive, and even the morning routine. He pointed out that they have a breakfast program where all the kids eat a district-provided lunch at their desks. Most parents would be thrilled. With food allergies and oral aversion and new transplant, I’ve been worried sick about lunch. Two meals at school, and one in the classroom, really bothered me.

I’d mention concerns, and my guide would do her best to offer accommodations they could offer to make things work. And I found myself saying, well, we’ll have to do this or that and make it work.

Still as we were leaving, my district representative asked me if I wanted to just start planning for Patrick to attend the more advanced classroom in the second school.. and I told her I needed to talk to my husband and Patrick’s therapist and get back to her.

I think I know that Patrick needs a higher functioning classroom.  But I so wish that I could have him closer to home in a beautiful classroom in a school that used to be the medical hub so they are wonderful at medical inclusion. And I don’t know for sure what to do about these worries. Or if I can really do anything in the middle of summer.

They tell me we can move him if we pick one school and it doesn’t work. I hate the idea of him being continually bounced around.

Meanwhile, after a week in his extended school year classroom at Hartvigsen, the principal called my helpful district representative and asked me if I’d consider moving him into a higher functioning classroom. And when I picked Patrick up Wednesday, they brought me all of his school medical supplies again. He’ll be moving to a new classroom at the school immediately next door to Hartvigsen called Plymouth Elementary. They have one class there. It has 7 students of all grades. But I’ve seen them. (They were waiting for a late bus while I was waiting for my meeting Monday) and he will fit in better there. And learn better there. He keeps asking me if his new friends will have wheelchairs. And he’ll still get to swim on Wednesdays.

Peg wall

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.