Tag Archives: Sensory processing disorder

Lots of appointments and planning a new normal

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

Therapy

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

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

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

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

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

Evaluation

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

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

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

Transplant follow-up appointment & diet changes

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

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

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

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

Allergies

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

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

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

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

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

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

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

Choosing a school

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

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

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

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

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

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

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

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

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

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

I am overwhelmed and scared. A LOT.

We are going to register tomorrow regardless.

This week’s normal

I think for the next little while, we’ll be building our normal week by week. Some things are routine. A lot is just made up. Most of the time, it feels like we’re flying by the seat of our pants, but every once in a while, we strike gold and I know that I got being a mom right that day. I wish more days were like that.

Patrick’s doing well back at school. Waiting to go in the morning is really hard. He gets up excited to go to school and then we try to fill the mornings. When we have our act together, we will do something before we leave. Work on homework. Visit the library. I’ve learned it helps to go early enough to let him get some wiggles out before school so we usually try to get 15 minutes to half an hour at the park that’s next to the school.

Where I spend the mornings when Patrick is in school

Where I spend the mornings when Patrick is in school

I’m enjoying a brief little bit of respite while Patrick is at school. One of this teachers pointed out a quiet little walking track near the school. So I drop Patrick off and then go walking. You know that mom who stays in her exercise clothes all day long? Shops in yoga pants? Picks up her kid with a messy ponytail and no makeup? Unshowered. Long into the afternoon? Yeah.. I’m that mom right now. But it is SO NICE to be able to exercise and this is the way I am doing it.

After walking, I’ll sit down in the far corner of this beautiful little grassy, shady park where i walk and read my scriptures. I love that the ladybugs are my study buddies.

An hour goes pretty quickly. But it is very nice to have this little bit of time for quiet reflection. Especially because, as happy as it makes him, going back to school has been hard for Patrick.

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I was thinking that somehow transplant had magically relieved him of his sensory processing disorder. No. It turns out that it was just being able to be home and unstructured. Keeping it together enough to follow the rules and sit still and be attentive at school takes enough of Patrick’s energy that, even though it’s only one hour, when I pick him up he is wound up like you wouldn’t believe. It takes a good hour for him to settle down again.

His temper is hot again – fueled by steroids that I’d hoped might not be necessary in this high of doses by now. And we spend a lot more time trying to cool down when angry.

The days that are golden we manage to fit in something magical like an hour of practicing reading early reader books at the library or sitting down together to practice writing or have lunch at the park. Patrick’s quickly taking to the idea of kids meals and is trying just about any sandwich I deliver packaged in that form. He devoured an Arby’s roast beef sandwich, though at home he has sworn up and down to me that sliced roast beef is “too brown.”

At least once a week, we try to stay late after school at the park. One or more of the kids from class will stay after school to play. His classmates really do love him and try to include him. I heard one boy tell a friend, “I can’t leave Patrick to play with you. He has been away and is lonely. You can play with us. But I want to play with Patrick.” Big words and big heart from a kindergartener.

My mother's day flowers

My mother’s day flowers

We have enjoyed a brief break from the rain and that’s had us spending afternoons outside. I asked Brian for flowers for the garden for mother’s day. He spoiled me by taking me to the greenhouse and letting me pick out flowers to my heart’s desire. So I’ve been planting all week. Patrick still struggles with this because he’s not supposed to garden in this first year and feels left out of an activity he loved. So we try to do it in small portions.

However, it did get him outside and, though he protested a lot the first day, after that he started asking me if I’d go plant flowers so he could play in the yard.

Speaking of Mother’s day.. I had such a peaceful day. Weekend, actually. Brian spoiled me all weekend, taking me out for breakfast and dinner at favorite restaurants on Saturday, and then cooking for me on Sunday. We opted to stay home, which made for a quiet and peaceful day.

I was invited to speak in church that day. That’s a nervewracking assignment for a woman who has a history of infertility and adoption and raising a child with chronic, terminal illness. Womanhood and motherhood have NOT gone the way I expected and I used to cry through and try to avoid church on mother’s day.

However, spending my walking time in the week before mother’s day studying messages about womanhood and motherhood and God’s love really can help to build up your sense of self-worth. After all that we have been through this past year, I’ve wiped away most of my expectations. Without expectations, it is hard to be disappointed. Instead, I spent most of the day just feeling grateful. Grateful for the lessons I’ve learned. Grateful for another year with Patrick. Grateful for relative peace.

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I needed that little recharge. Because not every day is full of peace and gratitude. Not every day do I get motherhood golden. I’m still learning to juggle time and responsibility, fostering independence and giving loving attention.

The end of this week ended up tricky. Wednesday night, late, I got a message from Patrick’s teacher saying a stomach bug was working its way through the classroom. Brian and I talked about it and decided to give Patrick a choice of whether he wanted to wear a mask and gloves and go to class or check out early with me.

The first day, he opted to check out early. We had a golden mommy day that day where I made up for missed school time by working with him on reading.

The next day, he chose to wear his mask. That day didn’t go as smoothly. He came home riled up and didn’t want to nap and decided to avoid it by being extra naughty so I’d need to stop him and/or put him in time out. A rainstorm came in that night and I can’t help but wonder if the change in barometer hurts him and he just doesn’t know how to express it. I mean, I ache from tiny little injuries. He had his whole digestive system removed and replaced.

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And so we go. Day by day. Week by week. Making this up as we go along.

I told a friend on Sunday that it feels somewhat as if my life was erased when Patrick got his transplant. We’re trying to piece it back together a little at a time. I’m trying to get the most important things back in first. There is a sort of peace in that simplicity. Some days I get the parts in wrong and the gears get jammed. Other days, they fit and we work like a well-oiled machine. Most days, a little of both happens.

Hope you’ve enjoyed pictures from one of our well-oiled days. We surprised Patrick with a trip to member’s night at the zoo. He’s been asking since Brian and I went on our last date if we’d take him on a playdate, too. When we pulled into the zoo parking lot, his face lit up. Bonus that the summer dinosaur display was already up.

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