This picture was taken 6 months ago at Pumpkin and Mustache Day in Patrick’s kindergarten class. I didn’t know it then, but the Halloween parade and party the next day would also be his last day of school.
6 months ago, I tucked him into bed and then I went and wrapped up his birthday presents and I went to bed, but before I fell asleep my phone rang and our lives changed forever.
I dare say, at least as far as I can judge right now, for the better.
Today, I had an IEP meeting with Patrick’s school. Can I tell you what an amazing school he is in? They were completely behind me asking for a slow transition back into regular school. In fact, they were good with just about everything I asked them to consider. This meeting was amazing!
Here’s the gist of things. There is a month left of school and Patrick’s immune suppression goals have been adjusted down because it’s been long enough since transplant to try. And the transplant team said that about this time we ought to consider starting to ease him back into the normal life that they did the transplant to hopefully give to him.
So, after a very thorough discussion today, the decision was made to start letting Patrick attend school for an hour each school day. He’ll attend the last hour of every day. He’ll spend the first half of that time working with a special education teacher to help him to make up as much ground as possible. And then he’ll spend the last half of the day with his kindergarten class so that he can work on relearning the classroom routine and social skills. Also, once a week, I’ll bring him in a little early so that he can spend time in occupational therapy as well rebuilding his strength, working on writing and other fine motor skills, practicing eating, and so forth.
Because he’ll only be in school part time, he’ll also still qualify to work with his in-home teacher.
And, when the school year is done, he’ll take a short break, and then get to participate in the extended school year (or summer school) program this year at another medical school that is actually even a bit closer to our home.
The mood in this meeting was so positive. I genuinely believe that this team is happy that Patrick gets to come back to school and eager to help him succeed in every way that they can. How many people come out of an IEP meeting saying that?
That doesn’t mean that his IEP meetings aren’t still intense. There is a lot to coordinate and I am constantly amazed at the efficiency with which they run these meetings. (Also, with their stamina to do so many back to back to back at this time of year. They had already done several that morning with several more to go.) We made plans for how to drop Patrick off and what to do if classmates are sick and an aide to be with him in the classroom and what physical activities he can participate in and what to do when he needs to stay home and how to make sure that he gets the absolute most bang for the buck out of his hour a day at school.
For the rest of this school year, they’ll be reimplementing the amazing IEP that they wrote for him the week of his transplant. Then we will reconvene in a month to figure out where he is on his goals and what the best plan for school next fall will be.
The most amazing part? I thought we’d be waiting a week or two more for medication changes but the team in Nebraska says that because he kept swinging too high, they brought his dose down and he’s already there. That doesn’t mean he’s not immunocompromised. But this is about the best it’s gonna get for a while and so we might as well let him live.
We are taking the next few days as a family to celebrate Patrick’s 6 month transplantiversary and half-birthday (because, face it, transplant is an awesome birthday gift but a sucky birthday party.)
And then on Monday, Patrick starts school.
I’m trying to wrap my mind around gathering all of the supplies, emergency plans, paperwork and other little details I need to have ready by Monday at 10:45 a.m. I’m hoping this is as good of an idea as it sounds. That he has the strength. That he can stay healthy.
It’s strange to think that a month ago, I answered a phone call and our lives stopped and reset.
And now, 6 months later..to the day.. we’re trying to kickstart life again.
Two weeks ago, my youngest brother got married. Brian and Patrick didn’t stay long, partly to protect Patrick’s immune system and partly because Patrick gets horribly bored at long wedding receptions. But I stayed behind at the reception. It was wonderful to catch up with family and friends that I only see when big events bring us together.
It was also a little strange to discover that so many of you read my blog, even though we haven’t talked in ages.
And there was something said to me by one of the women I’ve known and respected forever that’s been sitting a little funny with me that I’d like to address. She said how glad she was that we were home, especially as my blog had made it sound like we were living in “less desirable” circumstances.
This struck me funny because, although I really struggled with the loss of comforts of home at the Ronald McDonald House and the awkwardness of living in close quarters with other families day in and day out.. my memories of the Ronald McDonald House are overall very fond memories and I’m afraid I didn’t do the place and the people justice in what I wrote.
Patrick and Ronald last December
This week, a video was shared on Facebook of one of the families that we got to know while we were there who hold a very special place in my heart. They were there seeking the same miracle central line placement Patrick had needed to be listed for transplant and that mom and I bonded in a way few can over shared trauma. I don’t think to can understand how terrifying and desperate that end-of-the-road, hail mary, do or (literally) die situation really is. The video talked about how wonderful her son was doing and about how the Ronald McDonald House had helped her family. I thought it was good news and I wanted to rejoice.
The next day I learned that the video had, in fact, been shared in tribute. Instead of good news, the worst had happened. Lost central line access had put her son at the top of the transplant list. In the short time since we’d left the house, he’d received “the” call and gone for transplant. But something went wrong in surgery and he never woke up. He passed away this week.
We made a very calculated choice to stay at the Ronald McDonald House. Yes, there were financial benefits and proximity benefits. Yes, there were difficulties and uncomfortable parts, too. But we knew that being there meant the ability to share our journey with other people who’d get it.
I can’t describe the connection we have to the other families who lived long-term with us in that house. I learned how to be a transplant mom from them. We helped each other in every way we could. Cooking together. Doing each other’s laundry. Crying together. Celebrating together. They are part of my heart and having them now spread across the country facing these trials without being close to lean on each other for daily support is hard.
The truth is that doing this at home would have been much MUCH harder. During all those months away, the people who loved us back home would often say, “We wish you were here at home so we could take care of you.” It happened so often that I almost expected to have to set up a visitation schedule to slow the flow of friends and family through our front door.
But the reality is that coming home has been very lonely. Because we can’t go out, we probably see less of the people we love here at home than we ever did before. I don’t want to sound ungrateful. A lot of you have caught us in the halls at church to express your love and many of you have offered help in the way of meals or help cleaning. But it is easy to forget that left at home is a very social 6 year old. I often feel like Brian and I are his only friends. And finding the balance between taking care of my own responsibilities and making sure he has time every day where he is shown how very loved and important he is has proven to be a challenge.
Besides that, it is hard to imagine the kind of life we live unless you experience it. Everything we do has to take into consideration how and by whom Patrick will be taken care of. We don’t just go to work or to dinner or to church. We can’t just call up a friend and say “let’s get together.” We skip most extracurricular events. We don’t get to be apart for school. And when Brian travels this summer, I will be the only wife staying home.
When we DO catch you in the halls or on the street somewhere, we are having a conversation that we know is going to be very brief and so we know there is a choice between trying to take time to answer questions about Patrick and sharing our lives honestly and sincerely wanting to spend time hearing about and catching up with YOU. We don’t want every adult conversation we have to be consumed with medical updates, and so we may skim or skip over details. One friend accused me of trying to hide how I’m really struggling. I’m not trying to hide anything. I just don’t want to waste our conversation.
You won’t read as often about the things that made me cry on this blog right now. We have a different set of frustrations here at home. I don’t want to put in print the experiences where someone I love might have innocently hurt my feelings. I know that hurt feelings have much more blame in the person feeling them. I’ve learned over the years that people are trying to say things that are supportive and helpful and if I look between the lines I see and hear and feel love.
Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.
But there is one thing I have encountered a few times that I’d like to talk about because it is hurting and I don’t think you know.
I’d like to ask you to stop trying to find my silver linings and rainbows.
There was a marvelous sermon given in LDS General Conference a year ago. If you’re facing hard times, and let’s face it, who isn’t?, I highly recommend that you read this talk in its entirely. You’ll find it here. In it, President Dieter F. Uctdorf said:
We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?
It took me a lot of years of hard trials to learn that happiness is not something that comes to us after trials have passed. Happiness comes from learning to be grateful for our blessings right now. It comes from learning to see God’s hand in our lives. Right. Now.
That doesn’t mean that if you are struggling, if you are mourning, if you are going through hard times right now that you are ungrateful, unfaithful, or unhappy.
It has been a hard couple of weeks. We took a gamble and took Patrick out a little more than usual two weeks ago and he got sick. Being sick made him frustrated and moody. It meant even more limitations for him, which made him angry. We had a week of daily appointments.. appointments we shouldn’t miss and so we gloved and masked and we still went, which only made him feel worse. In the times inbetween, Patrick expressed his anger by acting out against the only people he had to vent to, his parents. Steroid fueled kindergarten anger is hard to deal with. Add to that the sleepiness caused by antihistimines and the insomnia caused by prograf and a stuffy nose? And monitoring his oxygen saturation periodically while he slept to be sure he was still doing ok. And, well.. you can imagine.
Thankfully, his prograf levels were accidentally low when he got sick and he was able to fight off the illness without needing medical intervention. But just as he got better, Brian caught the cold. He was down for the weekend, and then I got sick, too. Remember, we all spent the winter in fairly sterile settings and so none of us has immunity against this year’s viruses. Well, on the heels of a stressful week with Patrick, my body was fairly weak. I have spent the last few days fairly sick.
And it has rained most of the week. So we have been stuck inside more than usual. And, as Patrick has felt better, his body’s sensory system has been craving movement, so this was not a good week for that.
If you asked me this week how Patrick is doing, I probably would have told you about those things. Because that is what has happened this week and it helps me to talk about my struggles.
That’s the rain in our lives right now. And friends are there to talk about the rainy times, too, right?
However, right now when someone asks me how Patrick is and I mention that we’ve been stir crazy, missing school, easily sick, wondering why we are struggling to hard to set up playdates, lonely, etc., I can almost predict the response. The person I’m talking to will ask me how much longer things will be this way. They’ll point out that Patrick’s almost 6 months post transplant and wonder when his medications will change and his medical team will allow him back in public. They’ll try to show me the end in sight.
I know you mean this well. You don’t like to see us struggling and you hope that relief is coming soon. You want to point out that there’s a rainbow just around the corner or a silver lining in the clouds.
But right now, that isn’t what I need. I need someone to walk with me in the rain. I need you to help remember how much I love my raincoat and umbrella. I need us to look together at how rain makes the earth clean and helps the flowers grow.
In other words, I need you to listen to me about my struggles and maybe try to help me figure out how to get through what needs done this day and this week. And maybe to listen about the good things too.
Because a lot of good things happened in the past 2 weeks. We got set up with Primary Children’s liver transplant team so that now, we have a transplant coordinator who checks Patrick’s labwork and calls me to see how he’s doing and I don’t have to bug his very devoted doctor with every little question and play intermediary with the transplant team in Nebraska.
We also saw Patrick’s rehabilitationist and neurologist this week. They both assured me that, while Patrick’s cerebral palsy and other symptoms of his brain injury aren’t gone, it hasn’t been made worse by all he’s gone through lately. He doesn’t want to wear a brace right now and getting to physical therapy would be difficult. And they both assured me that, given all we have gone through recently, it’s ok for that to be on the back burner right now. They’ll keep watching for trouble. Someday we’ll get back to working on strengthening and stretching and improving his gait so he can run and climb. But for now, I shouldn’t feel guilty for not doing more about it.
Also this week, Patrick and I went to a teacher supply store and bought some math manipulatives. We managed to hold 1-2 hour study sessions every day without major tantrums. Patrick counted and added the new pattern blocks without getting upset with himself or me. And his teacher was really impressed when she came by the progress Patrick has made in reading, writing, and math.
I taught Patrick to ride his scooter. We laid in the grass and watched the clouds.
But I might not get to telling you about those good things that happened right now if you ask me about Patrick’s current struggles, and I answer honestly, and then we spend our brief conversation time talking about what things might be like when the rain stops. I promise, I may be wet and soggy and tired.. but I don’t so much mind the rain. And let’s face it, we’ve got a pretty rainy forecast ahead of us.
Our trials don’t mean that we need all of our responsibilities taken away. Yes, it may take more coordination for me to participate now than it was before I was a mother. But it is also healing to do normal things. I got to go to a youth activity and teach teenagers how to do data entry on vital records used for geneology this week. I had to get a babysitter, make special arrangements for dinner, and work around Patrick’s school schedule. But it felt good to be out among people and sharing my talents. It is nice to be included. I’d like to see you. I might have to suggest a less crowded venue for an outing or we might have our conversation interrupted two dozen times by my 6 year old. My life is messy right now. But I’d like to share it with my friends.
You might even learn something I haven’t posted in this blog. There is a lot I don’t write about.
Good things are on the horizon. Patrick’s 6 months transplant anniversary is coming up this week. A lot of things will hopefully change for the good. We are talking about when and how to go back to school and church. We also know that it isn’t going to be easy for Patrick, who has always struggled with routine and crowds and sitting still, to come back to them after such a long break. So we’ll need to take it slow and it might not seem to go well for a while.
I know that chronic disability is hard to wrap your mind around. Everyone likes happy endings. We like resolution. We pray for and believe in miracles. We don’t like people we love to struggle with hard things for years and decades and lifetimes. And I know that when you think of transplant you think of it as healing, a cure, and end to struggling. And so watching this be a long recovery and lifelong challenge goes against all of that. God promised joy in this life. But He didn’t promise us a life free of sorrow. Quite the opposite, in fact. He promised to refine us, and refining takes fire.
But I promise, it’s ok. We are ok with it. We can be happy in the rain. But rain is best when you’ve got someone to splash in the puddles and share an umbrella with us. I promise, I’ll listen about your storms, too.
I told my friend that there were hard things at the Ronald McDonald House that I sometimes miss it. I miss being surrounded by people who were all facing the same struggles and so able to mourn together. I miss those friends who made the best of hard times with me.
But I think I miss it most because I didn’t feel like I needed to sugar-coat my trials. Because often it isn’t until I say things out loud and see the look of pity on someone’s face that I even realize that it might be pitiable.
President Uchtdorf again:
We can choose to be grateful, no matter what.
This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer.
When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.
It’s a quiet snowy afternoon and seems like time for an update. This is a busy week comparatively for us. With spring break over, Patrick’s back to a regular schedule with his home hospital school. In this district, they have assigned him a teacher for 2 hours a week. She comes one day a week on Tuesday afternoon and stays and works for 2 hours.
When I heard that schedule I was actually really upset. We had 3 hours a week scheduled as 3 one-hour sessions when we were in Nebraska. Patrick rarely stayed on task for the whole hour. We often didn’t get all 3 sessions in. And I really wondered if this schedule could possibly work.
I would never have expected how well this would work. Ms. Emily is a special education teacher in a “behavioral” classroom in another elementary school in the district. That means that it’s no longer just me with strategies to keep Patrick on task. His teacher is really good at finding a balance between pushing him to do hard things and finding ways to turn breaks into educational opportunities or “teaching play.” It’s teaching Patrick to ask for a break when he feels overwhelmed or frustrated and that is a skill that will go a long way for him.
I really worried about the long sessions, but she’s good at keeping a variety. Patrick earns the chance to play educational games on her iPad when when he completes more challenging work and that seems to make the time pass. (And gives us moments where she stops and teaches me ways to work on the same skills at home.)
I think the best thing, though, is that she is bringing me tools that actually are helping me to make good use of the time I spend teaching Patrick. Not that I wasn’t doing my best before. Thank goodness for the resources of the internet or Patrick would have been much further behind. But there is something to be said for materials prepared by a professional educator for your child’s needs.
For example, she brought me a stack of sight word flashcards. They are printed on goldenrod yellow paper which she says is the color our minds learn best reading from. Patrick was pretty resistant to these when she first used them to try to test his knowledge. But she started to plant the idea of sounding out words to him and pointed out a few sight words that he could use that skill on. Patrick and I sat down that week to run through the cards and before I knew it, Patrick was figuring out words by sounding them out, and asking me for more cards to work with.
He is practicing with about 20 sight words cards right now, most of which he’s mastered at a glance. As he gets good at these, we just add a few more in at a time and soon he’ll have that whole stack memorized. She added to that showing me how to use some touch prompts on his arm to help him sound out and blend words together and he’s really starting to be good at reading most any CVC word, new or not.
In the same session, she gave me a stack of worksheets that she’d cut out of a handwriting notebook. And two plastic page protectors. I really doubted this one… but as it turns out, Patrick is totally in love with this particular workbook. I looked online to just get a copy of it and it’s about $100 off the shelf. Basically, it’s pages where he practices tracing numbers. But it has just the right mix of activities that catches his interest. Trace a number 6 times and then practice drawing that many pictures of a totally simple object for a kid to draw, for example. Who knew Patrick would love drawing suns and balloons and candy canes? And on the other side? We practice counting and patterning. I really need to make it to a teaching supply store and get some tanagrams and counters to match the workbook.. But he doesn’t seem notice they’re missing so far.
This work has been reinforced by another little bonus this school district threw in. To honor Patrick’s IEP, they send an occupational therapist out to work with him for 20 minutes a week. 20 minute, again, sounds like nothing. I feel bad for the therapist who devotes 2 times as much driving as she spends teaching. But her support in handwriting and other fine motor activities has taught us a few helpful things like labeling the lines on Patrick’s page with sky, flowers and grass that help him fit his writing within the lines. And because the therapist comes from the school he used to attend, she brings along familiar things that he worked with before that really make him happy and willing to work.
The grand sum total of this is that instead of spending time hunting for curriculum for Patrick, I’m given tools to work with and all the time that I can fit in for school work is spent working and Patrick’s making good gains.
The more I see how things are being done right here, the more convinced I am that things were done very, very wrongly by Omaha Public Schools. Patrick’s teacher was a sweetheart who really meant well. But I’m certain that several of the rules governing special education were broken. I can tell you I certainly will do things differently if I ever have to work with that school district again.
The upside is that things are good here. It’s still a struggle. Patrick is a little bit TV addicted right now and he isn’t always happy when I pull him away to work. But only at first. He’s always happy once we get started.
And we especially struggle on the days that Patrick doesn’t feel as well. We finally finished the 2 week course of antibiotics. It is so nice to only have to get up to refill formula, not to wake up and stay awake to try to give antibiotics. It took a few days to get Patrick past the insomnia that giving him Benadryl every time he woke up was causing. But finally, the family is getting a little better sleep and that helps all of us do better.
Sadly, though, allergy season hit just as Patrick came off of the Benadryl. He had some hayfever symptoms those first couple of days. Or at least, that’s what we thought was going on. Two evenings ago, Patrick started to sound stuffy, too. By yesterday morning, he was sounding pretty congested. Of course, there was also this massive wind-storm that came through and I thought that was to blame. Then, overnight, it snowed. 6 inches. It has snowed all day today. And Patrick isn’t breathing better with the air cleared out.
We had an appointment with his GI and an intro appointment with the liver transplant clinic today, too. I took him, masked. And his doctor thinks this is likely a virus.. so far, he doesn’t think it’s anything overly concerning. (Though I guess we are watching in case his immune suppression causes a latent virus in his body to get worse. But they don’t think that’s it. It’s more likely he caught something over the weekend when we splurged a bit to spend time with family.) Anyway – so far, we are just supposed to keep a watchful eye. Patrick isn’t horribly sick or getting worse. He’s not running fevers. His oxygenation isn’t the best while he sleeps, but humidifiers seem to help with that. And he sounds pretty cute when his little voice gets croaky and cuts out.
Otherwise, it was a productive appointment. It is actually kind of comforting to know that Patrick’s been assigned a transplant nurse coordinator here in town who can get us a doctor quickly is Patrick needed things. They’ll also be watching Patrick’s weekly labs and making phone calls to doctors, the Nebraska transplant team, and us if anything looks off.
Dr. Jackson and I talked about getting orders in place for Patrick to be able to go back to school part-time. He needs to write a letter summarizing what Patrick’s medical and nursing needs will be as he goes back to school. So we talked about my goals and how what he wrote could help with those. He said would recommend for nursing support for Patrick because, as he put it, a multivisceral transplant makes him “one of the most complex patients in the valley.” I wonder how the district will interpret this. I’ve been trying to get an appointment to talk about and plan for Patrick to transition back to school and need this doctor’s letter first because the district trying to figure out what services he needs to attend school and where he’ll go that those can be offered.
Anyway – in brief summary, this is what the school year is looking at right now at our house.
With a lot of Bob the Builder in the background. Patrick rediscovered Bob the Builder this week. He is thrilled to find that he already owns Bob the Builder toys. He doesn’t remember this was his favorite show when he was 2.
I’m trying to figure out how to make Bob the Builder do math. Surely that would increase the incentive and willingness to work at it. Patrick hates math because counting is boring. (And hard in the midst of his ADHD and brain injury.)
Oh, P.S. As I cleaned off my car this morning, I was pretty sure that that much snow overnight would have shut down Nebraska school. Kudos to Utahns for being hard-core in all sorts of weather.
I’ve been saying for days that I needed to blog. But it’s been a doozy of a start to a week. I’ll take my pictures from last week, which was much funner, and tell those stories in the captions.
A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren’t sold. This means we had the section mostly to ourselves.. much safer.
Sunday, Brian made a comment to me as I got home from church about how many diapers he had changed for Patrick while I was gone. I thought, “Oh, we’ve had a lot of that lately” and didn’t really listen. It was a busy day. I’d been at church for 3 hours and we had decided to stay home that day and invite some friends over for dinner last minute. So while Brian was turning out a roast and roasted potatoes, I was throwing some bread in the breadmaker and trying to get Patrick to nap. And, well, I didn’t think of it again.
Until the next morning when Patrick’s nurse checked his temperature while I ran upstairs to grab some supplies to draw labs. I came downstairs to him telling me, “He doesn’t have a fever, but his temperature is a bit high. You might keep an eye on that.”
But Patrick wasn’t complaining. He just needed a lot of diapers changed. And we’d just changed his formula to be a little more concentrated so it would run over less time and I thought that was all that was up.
When it was naptime, though, I checked Patrick’s temperature. To do this, we always check ours first to be sure the timpanic (ear) thermometer is working. And, well, Patrick’s temperature was still 99.6. But mine was 100.4.
All through naptime, Patrick’s and my bellies gurgled and talked to each other. By evening, I was feeling pretty darn sick. Apparently stomach bugs know how to get past our germophobic defenses.
Knowing Patrick had been feeling a bit stir crazy, and also knowing it wasn’t wise to go out, I’d embraced Dr. Seuss’s birthday wholeheartedly with books and themed activities for mommy school. I’d promised Patrick a dinner of green eggs (jello eggs) and ham. So, sick or not, I threw on a pair of gloves and still got dinner on the table and prayed that was enough to protect anyone who needed it.
The night was rough, but at least I was already up to be able to watch to be sure Patrick was ok. By morning, I was a bit better, though exhausted. Patrick’s temperature was down. His Monday labs had shown elevated liver enzymes.. an early sign of illness.. and there were some small hints of dehydration. I saw this online on Monday, but because Patrick’s prograf levels were late posting, I didn’t get to talk to his doctor until the middle of the day Tuesday. We decided that if he wasn’t seeming sick, that we’d wait and check labs again on Thursday.
At 11:45 a.m. an alarm went off reminding me that Patrick’s new feeding therapist was due to come. Oops. I probably should have cancelled. But knowing that I was taking super precautions to protect Patrick and that stomach bugs aren’t airborne, we opted to go ahead.
Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What’s not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.
Amazingly, Patrick was a rockstar for feeding therapy. He ate, including swallowing, a few slices of lunch ham. And half of a soynut butter sandwich. Then he asked for hummus and carrots.. practiced biting and chewing the raw carrots (though still not ready to swallow those.)
Sure, it made his belly pretty unhappy. But Patrick only knows unhappy bellies and so he didn’t mind. And after she left, when I made myself a bowl of Progresso beef stew, he decided he wanted to join me in eating that, too.
Note the pouch in Patrick’s mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a “smoothie’ in his hand for 2 days straight. Then I gave him peas. Now he won’t touch them.
Yesterday, I finally was feeling better. Patrick got up in the morning just bouncing off the walls, though. He asked me if we could “do move our bodies,” our Mommy school code for getting gross motor exercise in every day. And then he asked if it was exercise class day at the library.
It was.
And knowing that he really, really needed to get out, we chanced it and went to Mommy and Me exercise time at the library. The teacher there has seen us through 2 summers. I made sure we arrived early so I could explain what he’d been through and she was super careful with him. He did pretty darn well, actually. Better participating than I’ve ever seen from him there. But about 15 minutes in, he was too tired to go on.
That was ok. We went and picked books. I let him get his first library card. And we went home.
It snowed Tuesday. Patrick was so excited to play in it. Only his 2nd chance this winter. So on Tuesday, sick as we were, we went out and shovelled walks. Wednesday, he was thrilled the snow wasn’t gone. He declared we were making a snowman. And a snow elephant. And a snow gorilla. He went to sleep talking about it.
And I woke him while it was still warm. The snow was all crunchy from melting and refreezing and not at all right for snowman making. This got me off the hook for the other creations. But we did manage a little snowman. And because I had carrots to give it a nose, Patrick was more than happy.
Today we both were finally feeling better. Patrick got up a little too early, but it meant we were ready for labs. I was going to blog first thing, but the internet was down. So we dived into mommy school instead. The theme of the week has been fairy tales and today we learned about The Gingerbread Man. Patrick is a little miffed that the main character of the story got eaten. He has a lot to learn about fairy tales. It was a good theme, though. I was able to squeeze a little more math in that usual.
Patrick is really, really mad at the idea of addition. He doesn’t like the extra symbols. He HATES the word “equals” (or as he says it, “eekso”). But today, by using teddy grahams that he was allowed to eat as we did the math, he played along a little bit better. Plus, I said “1 plus 2 makes” instead of “equals” and that helped.
I’m trying to be patient waiting to get Patrick a teacher. Not that I can guarantee that it will even make a difference for him. I just worry that I am not making ground on helping him catch up after all he missed this year. I really wish sometimes I could send him back to class. I admire moms who homeschool and are able to make that work in a consistent routine. Today was a good day. Patrick gave me an hour and a half before he got restless and asked to outside and I declared “recess” and let him go play in the remnants of snow.
I was hoping better looking diapers would have meant also better looking labs. But Patrick’s labwork this afternoon still showed elevated liver enzymes, dehydration creeping upwards, and an elevated white count. I called Patrick’s transplant team and asked if we should change his formula recipe and they opted to add back in some extra fluid for the weekend. I am sad he needs it, but at least I won’t be as worried about dehydration. Patrick’s been doing great drinking water and powerade and eating popsicles, but I was still worried.
Meanwhile, as long as Patrick is still looking and feeling happy, we will just keep an eye out. They might do some blood tests for a few viruses on Monday. But hopefully, things will get back to normal.
Tonight was one of those nights where things just felt comfortable and happy at home. Our bird, Max, was in a really cheerful mood.. simply playing. Patrick snuggled up in my lap to play tonight. Max climbed up, too and let Patrick pet him. (This is a HUGE compliment from Max, who is fairly bitey.) Brian was in his chair playing with a new geek gadget. And everything was right with the world for a little bit.
People have asked if we have a new normal yet. Some days I feel like we have found a rhythm. But so far, nothing sticks for more than a couple of days. We are still figuring it out. And as long as there are looming follow-up appointments and the hope of Patrick starting school just around the corner and little medical enigmas lurking… Well, it’s hard to imagine we’ll be settled for a while yet.
Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we’ve been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.
Patrick and Max rediscovered each other this week. Starting with this moment. Patrick got Max up in the morning and tried whistling for him. Max got it and started singing back.
Whew. It’s been a week that we’ve been home. In some ways, it seems like this week has gone very slowly. In others, it has flown by.
Settling in at home has been a lot of work. For one thing, our vanload of possessions from Nebraska didn’t fit into our new home. I will admit that I had more than one panic attack over the pile of boxes sitting in my living room waiting for me to clean out and make room for their contents. It seemed that no matter how hard I worked, there were always still so many boxes. We finally got the last of them emptied and put away last night. Too bad it took filling another pile of boxes with things to be sorted through and donated or thrown away. At least that pile is in the basement at the moment.
But unpacking, though it took the bulk of my physical effort, was only part of the job this week. I spent a good portion of Tuesday morning sending e-mails and making phone calls. We get some reimbursement for Patrick’s travel home.. just some, but some is better than none and needs to be claimed.
And then there was homecare. It should have been easy to get homecare orders here. But our homecare company wouldn’t accept out of state orders. They had to be rewritten by Patrick’s doctor here. However, those orders got lost somewhere along the way. (And, research turns up, would have been incomplete anyway.) So Thursday morning was devoted to scanning my discharge orders and prescription medication lists, etc. and making phone calls to make sure that medical records actually arrived. Friday, a week after we left Nebraska and our last day of supplies, we finally got a delivery.
Labs with homecare nursing went a bit smoother, but I’m still not convinced that a copy of the results is being routinely faxed to the team in Nebraska.
Other projects included e-mailing Patrick’s school to start working on getting him an education plan, grocery shopping so we weren’t entirely dependent on others to bring us meals, talking to insurance to make sure preauthorizations were all set up, and getting a referral to feeding therapy.
These two are now inseparable. Now that we don’t have to worry about Max biting TPN tubes, and Patrick is learning not to lock Max in random rooms around the house. Max only has to be caged when he gets bitey.
On Thursday afternoon, the weather was beautiful and Patrick was pretty burned out on watching mom unpack boxes and talk on the phone. So after I made it through the morning business, we decided to take a picnic lunch to the park.
Patrick chose some of his foods. Veggie straws and crackers. I picked more nutritious things, too.. Chips and guacamole, chicken nuggets, and an assortment of dipping sauces to experiment with.
Then, I let Patrick pick a park. He asked for the one next door to his school. We didn’t think about that it was by the school until we were there. Then he wanted to go visit his friends at school. School was just letting out and it was kind of hard to have to say no. Thank goodness one little boy came over to play. He wasn’t a best friend, but he was a familiar friend and then helped ease the pain a little.
So did lunch. Patrick ate and ate and ate. He discovered he likes veggie straws in ketchup, but wasn’t a bit fan of the chicken nuggets. That’s ok. As long as he tastes the new foods, I’m happy right now.
Friday we had our first post-transplant appointment with Patrick’s GI, Dr. Jackson. Have I mentioned how much we love that man? He scheduled us in on a day that his clinic was closed. He spent and hour and half making sure that he learned all he needed to from us and that we had time to ask all of our questions. Patrick is in such good hands.
We talked about making a plan for when Patrick gets sick to allow him to bypass the emergency room as long as his ABC’s (airway, breathing, circulation) are intact. We went over Patrick’s medications and new anatomy and diet. We asked about sending him back to school, and found Dr. Jackson to err on the side of caution where our hearts are more than the team in Nebraska does. (We really want to wait out cold and flu season.) He let Patrick be the doctor and check his heartbeat and eyes and ears as well.
The general gist of things is that Patrick is doing well and Dr. Jackson is committed to helping him continue to do so. And it was nice to be back with a doctor who loves teaching. I now understand why and how some lab results are followed.
One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.
And so, here we are. Tomorrow’s plan is to get labs, to change a central line dressing, to try to clean up the pile of boxes in the basement, to make a meal plan, to do some mommy school with Patrick, and to cook dinner (still a novelty for me.)
Oh, and to spend a LOT of time barefoot. I’ve had enough of having to wear shoes and socks to last me a good long time. If it weren’t for labs, I’d maybe even try spending the morning in pajamas.
———-
One more thought. A lot of people are asking rules for visiting Patrick. I really appreciate the caution about keeping him healthy. Here is what I’ve posted on the front door.
Our son recently received a transplant. Please help us protect his gift of life by keeping germs away.
Please advise us if you have recently had or been exposed to a contagious illness. This might include:
Fever
Runny Nose
Cough
Sore throat
Vomiting
Diarrhea
Rash
Pink eye
Nausea or dizziness
You may be asked to wash your hands, wear a mask and/or gloves, or reschedule your visit for another day.
Please do not visit if you have an illness or infection treated with antibiotics in the last 48 hours, or if you have been immunized with a live vaccine (Measles a.k.a. MMR, Smallpox, or FluMist) in the past two weeks. Thank you for being immunized.
In other words..if you are actively sick or think your odds of getting sick are getting high, you might postpone your visit. If you’ve been sick and are feeling better, then ask. Good handwashing is probably good protection the majority of the time.
God does notice us, and he watches over us. But it is usually through another person that he meets our needs. – Spencer W. Kimball
Brian flew home Monday. I was kind of worried how this would play out as the last time he left while Patrick was still inpatient, I found myself feeling in well over my head trying to juggle caring for Patrick and trying to piece together little things for myself like food and clothing and bathing.
However, instead, I’ve found the last couple of days almost relaxing. An important lesson I’m learning here is to let people help me with little things so I can be free for the bigger things. For example, Monday morning a hospital volunteer knocked on the door just as I finished dressing Patrick to ask if I needed a break. So, she came in and played with Patrick while I took a shower, did my makeup (a rare luxury), made the bed, and cleaned up the room.
This week has been full of volunteer angels. From church, I find women I barely know (have met a few times or not at all) providing meals or coming and sitting with Patrick so that I can go back to the Ronald McDonald House to eat or shower or do other things. There is an after-holiday lull in charitable donations and so fewer meals are offered at the beginning of January than throughout the rest of the year. So, one evening while a lady from the Relief Society (church women’s organization) was introducing Patrick to the joys of a fart machine, I hurried back and made up a week’s worth of taco meat so I’d be ready for days I either couldn’t get away or nights where dinner wouldn’t be waiting.
This has been a blessing I can’t put into words. I am not unhappy that in our first month here, we ate such carefully portioned meals, a-la Hormel no refrigeration required microwave dinners, that I lost several pounds. But sometimes it was hard to be patient with Patrick and happy with this 24/7 mom/caregiver role I’m living because I was hungry. But right now, I am anything but hungry. I have to think to not end up being fed dinner twice. I haven’t even touched the supply of meals I bought right before Brian left because there has always been another one there someone has made for me.
But beyond food, this has given me the chance to keep up on laundry (with a little bit of help from a friend willing to fold and slip into my room my clothes if I can just get them to the dryer) and to stay showered and in fresh clothes (which I find goes a VERY long way to my general sense of well-being), and sane. I get an hour or two here and there and in it I try to be as productive as possible. I probably look like a mad-woman flying through the Ronald McDonald House when I go there.
Patrick is happier with this help, too. Someone appears offering help and he shoos me away to “the House’ so he can play. Patrick needs people. He loves when someone comes and he has someone new to play with. He really loves the volunteers who come help Child Life with activities. We had an awesome time the other day flying airplanes with the ROTC. Right now, Patrick is one of just a handful of kids old enough to play with, so they are especially excited to see him, too.
It helps so much to have people. Tonight, I got a call from a woman from church who is quickly growing on me, saying that she had some time and could she come play with Patrick so I can get out. I almost felt like I was taking advantage because I’ve been so well taken care of, but I’ve sworn to myself to accept help when offered. So she came and I almost didn’t even leave because it’s -3 with a wind chill of some other horrid number and everything is closed here as a result. But I remembered that Patrick’s been running a touch low on diaper cream and I had one more jar of his preferred kind at the house, so I went to go.
But, when I got to my car, it just wouldn’t start. I’d turn the key and it sounded almost like it was sighing. I had a jump starter in the trunk, but even that didn’t help. It just showed me my battery’s power dropping from 60% to 40% to unreadable.
So I came back in and I bought diaper cream at the outpatient pharmacy instead. Then I called Brian and I called my dad to assess the symptoms. And then i came back to the room feeling a bit beyond alone and helpless. Only I wasn’t alone. There was this sweet angel from the ward making playdough P’s with Patrick on the floor. And she listened to me talk through my problem and she offered all the help she could think of. And then she just talked for a while which is something I am REALLY missing here… talking to grownups and especially friends of my own faith.
And things felt lighter going to bed. In fact, Patrick and I stayed awake and giggled and talked for a while. Sometimes, he and I get playing a little more like it’s a sleepover. And last night he told me that when he grows up he wants to be a firefighter and put water on things. And that when I grow up I want to be a doctor… not like the ones in the hospital, but like the toy one in his Duplo block set that he got yesterday.
Which reminds me of another super nice thing that strangers did for us. Right before Brian left town, he discovered a couple of Christmas presents hidden under the bed that we’d overlooked on Christmas morning. Well, they couldn’t have been more perfectly planned if we’d done it on purpose.
When we got married in December, I was really sad that the wedding and honeymoon took up most of the Christmas season for us. So we decided to extend our family’s Christmas holiday like they do in Europe. There, the 12 days of Christmas actually start on Christmas day and are counted forward until January 6th, also known as Epiphany. Or, in Italy where Brian was a missionary, it’s called Befana.
So, we have celebrated Befana. We leave out our shoes and a good witch fills them with little gifts. After Patrick went to sleep Monday night, I snuck down to the C store and picked up some treats for my shoes, then I put the newly found presents and some chips and a book into Patrick’s. And when he woke in the morning, we had our own little holiday. And he got a couple of fleece sweaters that have been perfect for these bitter cold days. And he got some duplo blocks that have proven to be great entertainment, too.
General Patrick update.. Tonight, they turned off his TPN again, hanging some IV fluids to keep him hydrated. He will reach full enteral (through the belly) feeds on Elecare Jr. tomorrow late afternoon. They will check some labwork in the morning and we’ll start talking about discharge again. (Which means that I will also be making some phone calls in the morning to see if my insurance’s emergency roadside service can help me fix the battery issue so we have a way to leave here.)
Patrick feels great. I’ve learned to change the dressing on his surgical incision and will need to still do that for a few weeks. He is not a big fan of the job, but has gotten so he doesn’t cry the whole time.
We spend our days mostly playing. Today, they got the playroom ready for patients to play in. It is still missing locks on the toy cabinets, so you have to have help and permission to play there and have to keep the door closed while there. But that just meant that Patrick had to have 3 hours straight playing there instead today. And the room all to himself.
While he played, I downloaded more of his homeschool materials and the hospital teacher helped me print some readers. A “cold day” made it so Patrick missed his post-holiday return to school this week.. again. He’s only had 4 actual “school days” since we got here. I just learned a couple of the ladies from church homeschool and I am getting ready to pounce and pick their brains to figure out how to make my mommy school efforts even better.
We’ve been working on just one more goal here. A few days ago, Patrick was complaining that his left leg and ankle hurt. This isn’t the first he’s complained of it, so I asked for a physical therapy consult. She came seeming ready to assure me my concerns were over something normal that would pass. She watched him walk and stand on tiptoes and squat. And as we worked, she shifted from telling me that his hip looked weak but would get better to a genuine concern about what she was seeing. This is somehow maybe related to his cerebral palsy and we don’t know if it’s really a new problem or just one made worse by recovery.
She gave me some exercises to try to get Patrick to do.. lifting his legs to the side and walking on his heels. Because of his dyspraxia (motor planning troubles), this seems really, really hard for him as he’s never tried to move that way before. At first, he just wouldn’t. But I’ve figured out that I can turn it into a game of silly walking mother-may-I or a “can you do this?” challenge and he’ll play along.
Nevertheless, my plan of doing occupational and feeding therapy only with my limited visits while he’s outpatient is kind of disintegrating. If this problem doesn’t go away before we leave here, we’ll need to do some follow-up therapy. And I really need to find the number and call and get that scheduled.
I think Patrick feels more in control of himself here at the hospital. Maybe because the rules and routine are more predictable. Maybe because he’s spent more time here. Maybe just because his medication levels have been steady while he is here. Maybe because it’s not Christmas anymore. Maybe it’s because he can order ham and chicken broth for every meal. Or because my attention is less divided and all of the ways he acts out are him trying to have my undivided attention. I don’t know for sure, but I’ve also been using the extra time I have with helpers here trying to pull together some picture schedule and behavior reminder resources so going back to the Ronald McDonald House can maybe feel less chaotic.
Regardless, I can see that our time here is special and important. And I am beyond grateful for the helpers who have let me use this time well instead of just trying to survive each day.
Let’s start by saying how happy I am that my wonderful husband was willing to blog about Patrick’s Make-a-Wish trip. (Vacations usually require so much time that I’m helping Patrick to sleep that I don’t get a lot of in-room type that I could type.. and besides, it’s nice to hear Dad’s perspective.)
But – this is a big, busy time for Patrick so I am going to jump in and blog, too, about some of the other important things that have been happening in our lives. One of the biggest of which is… Kindergarten.
Can you believe that? Patrick is in Kindergarten! We NEVER imagined or dreamed this when we adopted him, when he was in and out of the hospital all his first year, when his heart stopped, when he started to lose central line access. Age 5 wasn’t in our plans.
For 3 years, I have driven Patrick to school and lined up next to those great big Kindergarteners who lined up without their parents and who talked and played together. I’ve watched them play on the shared playground. I’ve watched the teachers come to lead them into the school and heard them chant, “Eyes forward! Feet forward! Hands to yourself, and voices OFF!” then fold their arms and file into class.
And until the end of last fall, I didn’t imagine Patrick among them.
And then, when it started to dawn on me that that’s where he was headed, I panicked. And I went on a crazy rampage to get him help because learning to read and write was so far out of the realm of what I imagined Patrick doing that I was afraid he was going to become thoroughly discouraged and give up.
I mean – do you remember the year he had last year in preschool? From the moment the special education teacher came out to ask me what could possibly have gone wrong in Patrick’s life to make him start acting out in class when he’d always done well before, I’ve been struggling to help him rediscover his confidence in school.
And yet, the ball was rolling and Patrick was headed into Kindergarten, whether I was ready or not. Last fall, we had a “kindergarten transition meeting” where we met with the nurse, Patrick’s preschool team and the upcoming kindergarten team to tell them all that they needed to know about Patrick’s needs. And it took an hour and the resource teacher, Ms. Kerkman, seemed to grow increasingly wide eyed and worried and grumpy sounding as the meeting went on. But, in the end, they promised him placement in a typical classroom with lots of help, including a one-on-one aide.
And then, August rolled around and we hadn’t heard any more and I started to worry and sent of an e-mail reminding the principal and anyone else I could cc what we’d been promised.
And you know what? They followed through! I got a call a couple of weeks before school started inviting me to come in and meet the teacher and Patrick’s new aide and the rest of the team who’d be caring for Patrick.
It came on the heels of the trip to Omaha (which I promise gets a blog post soon) and so I made a mad scramble to pull useful information together. The first meeting was to go over needs again and I drafted a new “About Me” document. I was very proud that I kept it to 5 pages. About me is found here, if you want to read it.
That meeting was good, but also frustrating, as the hour I was given didn’t even let me scratch the surface of what I thought they should know that would help him. But I reminded myself that there was a reason I’d written it all down. And we went on.
2 days later, we came back again, this time to meet Patrick’s aide and give her specific training on what he needed. They didn’t give me a location for the meeting, and so we got a late start. Again, there was barely time to scratch the surface. I had time to teach how to take care of medical needs, but nothing about behavior or sensory processing techniques before Ms. Kerkman came in and declared it time to go home.
Patrick and his class headed into an assembly. Ms. Kim, his aide, is helping him inside.
And then, feeling completely unprepared, before we knew it, it was the first day of school.
Patrick was so excited! Dad came along to drop him off. How could he possibly miss such a big day? We waited, playing on the playground. Then the teachers came and taught the kids how to line up. I greeted Patrick’s aide and asked if she had any questions. Then away they went. Patrick came out at the end of the day beaming. I picked up Jimmy John’s and took him to the park so he could unwind and we could recap the day. He was so happy.
In his backpack that night was a folder of homework. And, as I looked through it, I was amazed.. He could DO all of this! It was on his level. Sure, it took a summer of hard work in Mommy School to get him to the point where it was possible, but even the reading and writing stuff? He could DO it!
The next day, I was invited to school. The goal: teach Patrick’s classmates about him. So I pulled together some pictures on my tablet and brought along Patrick’s little mini-me doll named Tubes.
The conversation went kind of like this. I showed the kids a picture of a group of kids and talked about how we are all different. Then, I showed the kids a picture of a kid wearing glasses and asked what they were for. (To help you see if your eyes don’t work right.) Then braces. (To help your teeth if they’re crooked.) Then a wheelchair. (To help you get around if your legs can’t walk.) We’re not sad about these things because they help us. Everyone is different and we all need different help.
Then I showed them a picture of a belly and we talked about what bellies do. They turn food into energy so you can play and grow. And if your belly didn’t work right? You wouldn’t be able to grow and play. So what can help? I showed them Tubes. I told them that Patrick needs to get his food right in his blood, since his belly doesn’t work. (Them:”Ew! Blood!!”.. Me: “Wait. Is blood gross? What is blood for?” One little boy: “It keeps us alive.” Me: “Right. Because it carries our energy from food.” Them: “Oh!”) We talked about what’s inside the backpack and how to keep the tubes safe. (Mainly, don’t play jumprope in them.) I told them to be careful they don’t get pulled because they go into his body. (At that moment, Patrick got up and walked away, stretching his tubes and the kids all gasped. So, I could explain that he knows how to not hurt his own tubes.)
Then I explained a little about food allergies and how they hide in foods that look safe. Then I told them about the brace he sometimes wear on his leg and how that doesn’t mean he’s hurt. (Which led into a 2 minute tangent about all the owies they have ever had.)
I wrapped up by telling them that Patrick has spent a lot of time in hospitals because he gets sick easy. I explained that meant he hadn’t had as much time as them to learn other things like talking and writing and rules for playing so he might seem to not know how to do those things, but that he was learning. I told them how excited he was to be as school with them and how much he wanted to make friends. This was met by a chorus of “I’ll be his friend,” and “Can he be friends with me?”
And you know what? Because kids accept difference so much better than grown-ups, they’ve kept their word. Patrick has friends. He is greeted by name and with hugs when he comes to school. He is happy and accepted there. Which is the best thing a mom could ask for.
Things were rolling along better than I could have ever dreamed. Patrick was actually making friends. We were getting a homework routine down, and would you believe it, after just a couple of weeks, Patrick’s reading sight words and tracing some numbers.
Sometimes when we’re exceptionally late or exceptionally early, we stop for breakfast on the way to school. A favorite is McDonald’s pancakes.
I’d requested a meeting with the district adaptive technology team. These are the people in charge of making “accommodations” for kids who have trouble with written or spoken language. With Patrick’s fine motor skills being very delayed, I’ve been worried that he might get frustrated with the task of writing or spelling. There were 8 people in the meeting, which was much more than I expected. Occupational and speech therapists, teachers, and me.
But the meeting went well. In fact, the meeting went wonderfully. Patrick’s teacher gushed about how much she loved him in her class and then told us that Patrick is about on level with his peers right now. I’ve never left a meeting so happy. We decided that this team will follow him throughout school in case writing becomes an obstacle down the road. And I knew Patrick was in the best of hands with a teacher who loved him and only saw potential in him.
And then, the next week, I went to pick Patrick up from school and one of the little girls in Patrick’s class ran right up to me and said, “Ms. Gough is going to go away and we will have a new teacher!” Then she bee-bopped away while I stood there wondering if I’d heard correctly.
But yes, the note in Patrick’s backpack confirmed it. The school had fewer kindergarteners enroll than they had planned on and the district decided that they had to cut one of their afternoon classes. Patrick goes to school in the morning, but since losing the afternoon class meant his teacher would otherwise be going part-time, Patrick was losing his teacher. Her last day would be the next day and then they’d have the substitute until they could hire someone new.
Yeah, I shed a few tears. And I played out several horrible scenarios in my head over the next few days. And I considered writing letters or protesting or pulling Patrick out of school. Especially when the next week I heard that they had no applicants and no long-term substitute lined up. But then I reminded myself that I’ve learned that fighting against the system and getting emotional don’t solve problems.
Thankfully, we had somewhere else to go for the week. Patrick’s make-a-wish trip meant that he could miss some time with a substitute. And I could figure out where to spend my momma bear energy when we got back.
But, a few days into our trip I got a voicemail saying that they’d hired a teacher and inviting us to a parent/teacher conference. Patrick’s new teacher, Mrs. Hunt, started the day we returned from Orlando. We sat down with her yesterday to discuss his needs. After a few minutes of me explaining medical terms for her, she stopped me and told me that she’d recently worked in the infant unit at Primary Children’s Hospital and, therefore, I didn’t need to translate for her. Not only did that make the meeting a whole lot faster and smoother, but it gave me some peace of mind as well.
Today was Patrick’s first day back to school since our trip and he seems to have done ok despite the interruption in routine and the new teacher. We’ll see what lies ahead.
Overall, though, this start to Kindergarten has gone much better than we’d have imagined. Patrick’s classmates were so excited to see him come back today. They wanted to hear all about his trip. One favorite friend immediately held onto his backpack handle and walked with him, comparing Disney experiences.
Patrick’s aide , Ms. Kim, has done such a good job taking care of him. And that is translating to him doing better in class and with his peers. She and Ms. Gough have built a great foundation for him to start with and I hope that he’ll continue to do well with this new teacher, as well.
But I still step back a bit in awe sometimes. It’s October. Patrick’s in Kindergarten. He’s learning to read. What an amazing place to be in!
Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.
Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.
Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.
Our first day of Mommy School. Learning the shapes of letters by building them from playdough.A practical life mommy school lesson on how to sweep.
And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.
B is for Bears, and a teddy bear picnic.
The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.
Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.
Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.
I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.
We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.
Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.
The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.
I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.
My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.
Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.
So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.
Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.
So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.
Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.
Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.
And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.
I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time
Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.
Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.” Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?
I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.
So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.
Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.
It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.
I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.
As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.
But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.
My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.
In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.
Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.
Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.
But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.
Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.
And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.
At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.
Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.
But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.
I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.
Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.
I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.
I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.
And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days.. She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.
She calls the project The Orange Rhino challenge.
And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.
But I just couldn’t seem to get there.
And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.
That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.
And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.
I stuck a sheet of foil star stickers in my pocket and away we went.
It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.
I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.
So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.
My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.
Patrick Hoopes 