Tag Archives: proud moments

Dear Laura

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

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

Proof we are still alive.

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

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

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

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

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

In spring:

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

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

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

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

In summer:

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

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

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

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

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

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

And then, in fall:

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

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

First Day of 3rd grade

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s great to be 8!

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

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

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

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

IMG_20160222_175617

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

IMG_20160719_130551

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

IMG_20160910_164955

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

IMG_20160721_190559

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

IMG_20160831_193316

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

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

 

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

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

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

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

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

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

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

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

IMG_20160707_100018 (1)

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

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

First grade

 

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

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

IMG_20150817_092910

Back to school shopping - breakfast date a Dunkin Donuts

Back to school shopping – breakfast date a Dunkin Donuts

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

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

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

 

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

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

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

IMG_20150826_152721

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kindergarten – untraditionally

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.

Transplant Day 38 and Look Mom!

I

Patrick has been DYING to get his hands on this statue of Robert Frost since he first saw it. We also visited Thomas Jefferson and some other sculptures today.

Patrick has been DYING to get his hands on this statue of Robert Frost since he first saw it. We also visited Thomas Jefferson and some other sculptures today.

‘m blogging at 3:30 p.m. because I expect Patrick to sleep all afternoon. He had a pump alarm at 5:30 a.m. and the nursing staff tried to pull a “while you’re awake” rush at vitals and other care. The result was that he was wide awake, and since labs were due half an hour later.. well, he was up. But I wasn’t ready to be up, so I we talked and agreed to turn on Blues Clues so he wouldn’t wake up the neighbors and then I layed down and slept while he watched. I’ve decided that, given that insomnia is a well-known side effect of steroids, I need to just go with the flow when he can’t sleep and this is one solution that has worked.

The problem is that this worked almost too well. Patrick would wake me every 10-15 minutes or so and tell me something about his show. And I’d tell him I’d get up at the end of the episode.. then I’d fall asleep again. It was like I was a teenager with a snooze button again. I slept till 9.

But it worked for us today. When I got up we were productive. Bath. Dressed. Playtime. Meds. Cleaned up the room. Zofran worked so when he got up, he felt fine.

Rounds came early. The doctor heard Patrick’s number and looked at me and said, “Well, do you want to go out?” He was entirely sincere, I think. The resident, however, got this panicked look on his face and said, “The coordinators (transplant coordinators) said not on the weekend!” I knew that really they need tomorrow to pull things together the right way and kind of laughed it off. It’s good to hear that they are earnestly considering discharge, though.

We’ve had a good day so far. The morning kind of dragged. Hospitals are so quiet on Sundays. We did a little bit of primary (Sunday School). It didn’t go over as well today. Patrick’s body was saying “move” and so sitting talking wasn’t going over so well. Singing time was a little better. I bought a little app that plays the church songs with a bouncing ball over the words and I sing along. He mostly just watches me. But I did get him to try and repeat one of the Christmas songs. And we watched a couple of videos. Today we talked about the resurrection and Patrick hands down refuses to believe that Jesus died. He knows “He is just ok, mom!” So I tried to explain that He died and is alive again and we used some exam gloves to demonstrate the spirit in the body and not. But I think this concept is still beyond him, oh well.

Because Patrick was needing to be up and moving, we went to the playroom. I set up bowling. He took one throw, then grabbed a chair and told me bowling was better sitting down. Yeah, his body is saying move, but it’s also saying “Gee, I’m tired.” So we tried bowling from a chair and that didn’t work so well. So we tried just sitting on the floor rolling a ball back and forth which worked better, but wore him out pretty quickly, too. He got up to play with magnets and his feeding pump started to alarm because it had run dry.

He ran away so fast once he had a backpack on that I could barely catch a picture

He ran away so fast once he had a backpack on that I could barely catch a picture

Today, though, that was good news. I asked his nurse this morning how she’d feel about letting me use Patrick’s home pump for the afternoon. That way, I could practice with it, Patrick could get used to it.. and we could take advantage of how dead the hospital is on a Sunday.

No sooner had I put the pump in the bag than Patrick was asking for it on his back. And with it on, away he went! He just about ran out the door without me.

We went all over the hospital today. We went up to the NICU where the rooftop garden is. The garden doors were locked for the weekend. (BOO!)… But Patrick insisted on playing on the flight of stairs leading up to them. He long flight made him huff and puff, but he found a set of 4 steps that he declared were “easy peasy.” And, easy or not, he tried them a few times.

Then, we decided to walk over to other hospital building called Clarkson tower. Think walking from Primary Children’s to the University of Utah… only with the connecting corridor being about 2-3 times as long. We had to stop to take a few breaks. Thanks goodness for benches and Christmas trees along the way. But he made it… and at one point, he shouted, “Look, Mom! I’m runnin’!” And away he went down the hall until he couldn’t go any more.

We visited the chapel. We played in the guest pavilion. We found every Christmas tree we could muster. We passed the attending surgeon on the way and he gave Patrick a HUGE smile. (Bet that wins some discharge points.)

He claimed to really like this view. I think he really liked the window ledge to rest on.

He claimed to really like this view. I think he really liked the window ledge to rest on.

We washed our hands about a billion times. (Patrick is more than happy to wear a little portable hand sanitizer around his neck and wash his hands as well as the hands of anyone else standing near him.) We practiced pushing elevator buttons with wipes and with our elbows. We talked about what it’s safe to touch and what’s not safe to touch.

Learning to be immune suppressed is going to be a big stretch for Patrick. We’ve always said that Patrick was fragile, but needed an immune system and so we have exposed him to as much as possible before. Now, the opposite is true. Before, a cold would have taken him a while to recover from but he could fight it. Now, he might not be able to fight what for us is just a mild virus.

So hand washing and mask wearing and no touching and germ fearing and crowd dodging are going to be our norm. At least for the immediate future. The transplant team here has told us not to keep him in a bubble. But also to be careful. And right now we may be erring on the side of too careful… But this recovery has also gone too well and we don’t want to risk undoing that if not undoing it is even an option.

We came back to the room to take the sacrament. Patrick has really taken to the young men’s president who brings it. He just squeezed his way right into his arms today. And for the first time in weeks, he swallowed the bread.

Of course, he also has had 1/4 cup of chicken broth and a few bites of pasta today… all his own idea. There may be hope of eating yet. Especially once we get outpatient and the foods are safe and familiar. If I can just figure out how to teach him it’s ok to swallow now.

Anyway – I expect we’ll wrap this day up with a video chat with Daddy and the family at Sunday Dinner back home in Utah. We’ll make our Christmas advent ornament while we watch the annual Christmas Devotional, one of my favorite holiday traditions. And then bedtime might be a bit late because Patrick will have napped late. And if all of that holds true, this post will auto post at 9 p.m. tonight.  (If not, you’ll never even know I wrote this last two sentences.)

But for now, with Patrick napping so deeply, I might as well see if I can get a few things done just in case we do make it out of here tomorrow.

Transplant Day 33 and back to being a kid

You’re going to love this update.

Today has been a very good day. I got back to the hospital to find Patrick just waking up. One of Patrick’s primary nurses who loves him and really advocates well for him was back on today, so I knew things were headed in a good direction. We did our usual morning routine, including a bath that he didn’t want to do because he hates getting up and coughing till it makes him sick. But we got through it and then Daddy said it was time to go to the playroom.

At first, Patrick was just as fearful of walking. But we got into the playroom and he saw a toy he wanted and he couldn’t describe.. So he got himself up off the floor and walked over to his dad to get it. Yup.. We are 4 weeks post-transplant and his abdominal strength should be coming back. Apparently, the pain from Saturday’s surgery is getting better, too.

We stayed in the playroom for 2 hours. Part of that time, Brian went back to the room to pack. When finally I could tell he was getting bored by the number of toys strewn on the floor (where they aren’t supposed to be) I grabbed his wagon and suggested we go for a walk. From time to time Patrick gets a card with cash in it. This week, there was a book fair downstairs so I suggested we go pick out a book. He was really excited about this! When he saw the giant dry erase book, he was sold. Letting him pay with his own money for the first time was priceless.

Then, we came back up to the room and it was time to leave to get Brian to the airport. Patrick got to take his new book and go sit at the nurses’ station. They told me they were also taking him downstairs for craft time.

So, after saying goodbye for a few weeks to my husband and best friend (hard, no matter what) I decided I had time to do a little something for me. I’d heard that the casserole from last night’s dinner at the Ronald McDonald House was amazing and decided to go get some. (Yup. It lived up to the description.) Then, I went upstairs to our room and put a bedrail and mattress protectors on Patrick’s bed so it will be ready when he gets to go there. And I headed back to the hospital.

Well, I got there at 3:05 and found that Patrick was back upstairs in the playroom. And they had already gotten him a volunteer and promised him painting. I asked if he would like for me to stay and he said that, no, he’d like his friend to himself. So I came back to the room and did some things on my computer while he played for a couple more hours.

All told, Patrick got to decorate a Santa hat, make a bracelet, make a jingle bell shaker, paint some pictures, and just generally play with toys. Then he came back to the room and was ready for some myself time and spent another hour playing with playdough.

The ward (church) called a new compassionate service leader on Sunday. She called tonight to see if she could bring me pot pie. After having stuffed myself on chicken cheese stuffing casserole at lunch (thinking dinner would be light) I am going to bed with a super full tummy. Also, she is crazy super nice. She has only been in the ward a little over a year and got leukemia and had to have a bone marrow transplant right after.. so she knows this hospital and life being sick and being new in the area and the whole shebang. She made pot pie so I could have comfort food. Patrick loved her visit, too.

After dinner, I got him up and we went for another walk, and then climbed up into bed. We called grandma to video chat until I could see his eyelids dipping. Then the nurse came in, gave him his meds, and he went off to sleep.

Today Patrick is off oxygen and doing well enough we dared to take the cannula off of his nose. He is sleeping lying flat in his bed with both oxygen saturation and heart rate perfectly normal. This is a huge comfort for me as I consider trying to decide when it is safe for him to go outpatient. Breathing while I’m sleeping, check.

The other great news is that after needing to go back on TPN for a few days because of the problems with his stoma, they put him on full feeds and turned off the TPN tonight.

So, all-in-all not a bad day.

Transplant Day 10 and the Sabbath Day

Overall, today was another peaceful day. I’ll admit that I think Brian and I are beginning to feel a bit slothful. But I think we are on the road to that changing (in a good way) soon.

Today’s milestones:
1) We asked the doctors if it was time to remove the IV in Patrick’s neck. The answer was an emphatic, “yes!” We didn’t find a good time till evening, but Patrick is much more comfortable.

2) After tolerating clamping and tastes of food yesterday, they started feeding formula into Patrick’s stomach through his g-tube. The rate is only 5 mL/hour. However, that is the most we had ever succeeded in feeding Patrick before and it’s the starting point now. It’s only been running for an hour, so we’ll see how it goes. But so far, so good.

3) This morning when Brian asked Patrick if he wanted to get up to walk, it made him cry. However, at 10, after some pain meds, he got up and walked to t

he scale to be weighed. We pointed out the playroom two doors down the hall and offered to bring a chair he could stop to rest in on the way to look inside.  Not only did he make it there, but he decided to stay to play. 2 hours later he was looking tired so I coaxed him back to the room.

 

Patrick got into the playroom, sat down in his chair and asked what he could play with.

Patrick got into the playroom, sat down in his chair and asked what he could play with.

He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.

He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.

4) Given the success in the playroom and his love of crafts, I cleared off and set up a craft table in his room. He’s been there drawing for an hour and a half.

Breathing treatment while sitting at his craft table.

Breathing treatment while sitting at his craft table.

IMG_20141109_204904

5) Dad and I changed Patrick’s ostomy bag without help. The nurses were busy helping another kid having a much worse day when we discovered the leak. So we just dived in. It’s kind of like riding a bike. You don’t forget. Just have to learn how to work with new supplies and anatomy.

6) We got to take the sacrament. This is so important, to have a time each week to remember Christ and renew out commitment to Him.  In turn, He promises that His Spirit will be with us, something we especially need right now.

Last week, things were too crazy and we didn’t get in touch with the local congregation on time. But this week, they knew about us. Two men from the ward came for a visit and to administer the sacrament. One of them was the anesthesia resident on Patrick’s case the night of his transplant. Patrick was delighted to see him again.

We also had a visit from the Relief Society (women’s organization) and Primary (children’s sunday school) presidents. They scheduled in advance, but I fell asleep helping Patrick nap and they ended up visiting with Brian alone. That was kind of a bummer. I looked forward to meeting them. I hope they come back. But they did bring a sweet little card with the primary kid’s fingerprints and names and some curriculum materials.

This will help, too. I really need to get my game together and plan some home-sunday-school for us. Patrick’s not going to be allowed to go to church for a long time and that teaching is too important to miss.. For all of us.

Anyway – Sundays slow down even in the hospital, so I thought I’d blog early. We could use the rest. Mondays are not quiet. Therapists, social workers and a whole slew of other people will be back to work tomorrow.