Category Archives: LDS Church

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.

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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.

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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.

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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.

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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.

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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.

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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.

March, or in other words, take that MacBeth

On the first day of March, I sat in the 3rd grade classroom where I volunteer and I listened to the teacher, Mrs. H., explain to the children that March is either lion or lamb. I had been thinking it, too. We all have heard it. “March comes in like a lion and goes out like a lamb.” We made crafts about it in school. Only Mrs. H. proposed a different idea. Whichever way comes March comes in, it goes out the opposite way. And that particular first day of March, despite a cold wind, was overall quite warm and sunny. She told the children to watch and see if March would go out like a lion.

I saw a lot of lions and lambs in the last few weeks of March this year. The spring equinox was early this year, and so also was Easter. For school schedules, that meant that spring break came earlier than usual this year, too.  In some ways, it was just on time for our family.

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March started out a little harder for Patrick. And very busy with work and other responsibilities for Brian. Our lemon of a Jeep misbehaved one too many times for our taste. Actually, its radiator literally blew up, revealing another potentially time-consuming and costly repair. And so we decided it was time to buy a new car. That’s great news. And a lot of fun.

Unless… you happen to have an uncontrollable obsession with cars. Shopping for, purchasing, and then adjusting to a new car proved exceptionally difficult for Patrick and led to him being unable to concentrate at home or even at school.

Brian’s work got especially busy right around that time, too. He crammed a business trip, some off-site planning meetings, and 3 middle of the night system upgrades into a period of about 2 weeks. All while fighting a monster of a cold.

Bike riding around Willow Pond

Bike riding around Willow Pond

And so when spring break rolled around, I think we all found ourselves more than grateful for the opportunity to escape. Brian saw the long school break on the schedule and decided to treat our family to a vacation. And, as we really only know how to really relax in one place, off to Disneyland we went.

It was a great trip, honestly. With the newfound attention-span Patrick’s medications have given him, he’s started to enjoy feature-length movies of late. And his favorite of all is Cars. He recognizes scenes in the movie from his trips to Disneyland (instead of the other way around, which is priceless.) And so was extremely excited to get to visit Radiator Springs, eat in Flo’s Diner, dance with Luigi’s cousins, and meet all of his friends in person.

We crammed as many rides into our trip as possible. We splurged on a character dining dinner the night we arrived. Patrick loved having mac & cheese pizza, mashed potatoes, corn on the cob, an a bowl of M&M’s while being visited by his favorite characters. Pluto even let him feed him. As a bonus, we then skipped meeting characters this time around, allowing time for extra rides instead. We stayed in a hotel with a pool and went swimming as a family for the first time since Patrick had his line removed. We watched firework on our walk back to the hotel every night. We didn’t sleep enough at night, but enjoyed early mornings in the park. It was a fun trip.

We came home on Saturday afternoon to give ourselves time to get ready for Easter the next morning.

Oh, what a time for the message of Easter for me. While we were in Disneyland, two babies were born in my family. I have a new niece and nephew. Born just a day apart. So before Patrick returned to school, we went and met the new babies.

He doted on them. Patrick loves babies. He kept asking me if he could bring them home. He hugged them too tight. He kissed them. And he promised them he’d be their friend forever. Oh, how he made my heart ache to let there be a baby in our house.

And, oh how he reminded me that it is anything but possible right now. In all his loving attention, he has no idea how strong he is, how fragile they are. And he just can’t understand that they can’t get up and play or eat or talk the way other people can. So thank goodness for baby cousins right now. Because we need babies in our life, even when we can’t have them in our home.

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So in the mornings, I kissed and cuddled babies. In stark contrast, in the evening, I said goodbye to a dear friend.

One of the wonderful things about my church is an organization called the Relief Society. Everwhere the church is, the women of the church are gathered together in this organization. And it doesn’t matter how different you may be in age, background, culture, or wealth.. you are sisters. The neighborhood I live in was built new just long ago that many of the people who built the homes originally are reaching the ends of their lives. And so you’d think I’d get used to having to say goodbye to these sisters from time to time.

But sometimes they work their way into your hearts a little more. This friend and I loved many of the same things, despite differences in age. She was a teacher and invited me to translate in her classroom. She was a musician and loved to invite me to sing, and then push my abilities with difficult songs. She was one of Patrick’s biggest fans. And although I’ve known for a couple of months that she had been diagnosed with a terminal illness and that her death was quite merciful, still I think this is one goodbye that will stick with me for a while.

Especially because of timing. In the week after Easter, I greeted two new babies and attended a funeral. In fact, the day of the funeral, I spent the afternoon with Patrick at the 10th birthday party of a classmate. What an interesting sampling of milestones. To see the bookends of life so close together has made me think about the volumes inbetween them.

When I was in high school, we had to memorize a soliloquy from Macbeth. With his castle under attack and everything falling around him, Macbeth receives word that his wife has died. And his reply:

“She should have died hereafter;
There would have been a time for such a word.

To-morrow, and to-morrow, and to-morrow
Creeps in this petty pace from day to day,
To the last syllable of recorded time;
And all our yesterdays have lighted fools
the way to dusty death. Out, out, brief candle.”

I’m not sure exactly why this pessimistic eulogy has been in my mind. Except the knowledge that it is so wrong. Because life is brief, but so much more than “signifying nothing” as Macbeth lamented. In fact, a funeral reminds us that it is, in fact, all the little nothings, all the everyday things. all the tomorrow and yesterdays and todays full of mostly mundane things that add up to what matters.

Because death isn’t the end. It’s not a period. It’s a comma.

Easter celebrates that fact. Because Christ came. Because of his sacrifice. Because he died, and then after 3 days was resurrected, we all will live again.

There is something wonderful to hope for.

However, I feel that being a full-time caregiver is so perfectly captured, though, in the words “tomorrow, and tomorrow and tomorrow creeps forth in this petty pace from day to day.”

I’ve been struggling a bit this month. I have been feeling lost. Invisible. Mundane. I don’t have the hang of this new life. I have more time, but not complete freedom. I’m not fighting for survival every day, but there is still a lot of resistance in our lives.

Every day certain things must be done. I clean the house and do laundry and do the dishes. I sweep the crumbs of Patrick’s snacks. I put the toys back in the toybox. I shop and plan and make dinners. I prepare medications by measuring, cutting, crushing, and mixing, and then make sure they are given on schedule. I help with homework. I encourage reading. I dress and undress my son. I remind Patrick how to wash his hair. I bring in the mail. I clean off the kitchen table. Over and over again. Only to need to do it again the next day. Or the next hour.  I’ve been kept just a little too busy to dare make time for myself but had just enough free time to fret over it.

I’m struggling to get the courage to take time for myself. I’m so used to abandoning what I need to do to take care of Patrick that even though I have a little bit of time, I am timid about branching out. I don’t trust that I’ll be able to finish what I start. And that then I’ll be upset. The problem is that this is kind of a lonely way to approach life. I’m trying to reach out and reestablish relationships that got pushed aside when I didn’t have time to do anything more than survive each day. But that takes courage, too. And although I may sometimes choose to be outgoing, deep down I’m pretty shy.

But, like you, like most of us, I know the best I can do is get up and try again each morning.

We often compared the life we led with Patrick before transplant to a rollercoaster. Thrilling highs and followed by quick plummets. I’d learned to live with that kind of thrill ride. You just hang on tight.

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But in Disneyland this last trip, Patrick discovered a new favorite roller coaster: Goofy’s sky school. Instead of fast ups and downs, this ride is a much more gradual descent. Instead, of hills, it’s full of sharp turns that knock the breath out of you. The track is obscured so you don’t always see it coming. Sometimes that’s what this new version of life feels like.

It’s been a year since Patrick’s last hospital admission. That is ASTOUNDING to me! It’s been a year since we had to drop everything because he was suddenly fighting to survive.

Let me tell you a bit about what the ride is like these days. It’s gentler, for sure, but it’s no “It’s a Small World” cruise.

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Geared up for a snowshoeing field trip at school. Couldn’t ever get him to look at the camera with eyes open.


Patrick’s been struggling with behavior at home and at school. And every note home or call home has left me feeling helpless because, unlike problems with his health that had prescribed medical solutions, this isn’t straight forward. They turn to me for answers and I don’t have them.

He’s doing ok. We’ve been experimenting with changes in his medication and the changes are helping. He is doing better. But the transition has been tricky. And I don’t know if it’s been that, or illness, or hayfever, or growing, or something else but he has been tired and grumpy and not himself. Medicine is more practice than science and when it comes to brain injury, that’s especially frustrating.

We increased his dose of clonidine to see if we could help afternoons go better, and he started to need a nap every day. He hates naps. But he can’t function sometimes without one. I even had to check him out of school and bring him home to nap last week.

We’ve talked to his psychiatrist and adjusted that dosing and talked about trying some other things. It seems to be helping. But it still feels helpless.

With time to kill between doctor's appointments, Patrick and I stopped in at the museum at Fort Douglas

With time to kill between doctor’s appointments, Patrick and I stopped in at the museum at Fort Douglas

We had a good scare right before spring break. Patrick was knocked off of the playground at school and landed flat on his stomach. It left a bruise where his g-tube hit and so I had to squeeze in an emergency visit with his GI to check to make sure that his graft wasn’t at risk. That’s a possibility with any injury to his abdomen.

Perhaps the most frustrating thing is that out of the blue, his oral aversions have gotten worse. He won’t take his vitamins anymore in the morning. I crush them and mix them in yogurt so they are easier to eat. He sticks his tongue out to block them going in. Or holds them in his mouth and doesn’t swallow. It’s miserable to watch. But they aren’t optional. They’re mandatory. And so we start many days with me pleading with him to do something that he thinks is torture.

He sprained his ankle at the birthday party. He tried climbing onto a bunkbed and fell off. Patrick’s never really had this kind of injury. With his cerebral palsy, he was especially unsteady limping. He also isn’t used to regular illnesses or injuries still, so he was extremely afraid. Asking him to do what little might help.. Elevation, ice, rest. That only scared him more. He needed extra help getting around, getting dressed, bathing, etc. Thank goodness it was conference weekend so it was ok for him to stay home. He’s spent a few days inside at recess at school. But thankfully he’s healing. He’s limping, but can jump and run and stomp while limping.

Breakfast in the waiting room at the Eccles Outpatient Building

Breakfast in the waiting room at the Eccles Outpatient Building

I’m grateful to have had a couple of weeks of bookends. A couple of weeks of being shown things to make me think about what I’m putting inbetween. And a reminder that there are often many volumes in our life. We’re put away the one called “Ultra Short Bowel Syndrome” and are nearly done with another called “Transplant Recovery” but this latest volume of “First grade” has certainly had some unexpected plot twists.

I’m sometimes tempted to pen, like Shakespeare, that tomorrow and tomorrow and tomorrow just keep creeping at their petty pace. But that feeling is only a page in the story.

I heard a talk this weekend that’s helping my sentiments for tomorrow. It was shared in the semiannual general conference of the Church of Jesus Christ of Latter-Day Saints this weekend. The speaker was Elder Jeffrey R. Holland, an apostle and a gifted teacher.

Here’s a brief summary.

First, he shared this image that kind of sums up how I sometimes feel when I’m headed to bed and thinking about what I need to do the next day.

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Then, he gave this counsel about how to proceed.

“If in the days ahead you see not only limitations in those around you but also find elements in your own life that don’t yet measure up… please don’t be cast down in spirit and don’t give up….”

“Please remember tomorrow, and all the days after that, that the Lord blesses those who want to improve, who accept the need for commandments and try to keep them, who cherish Christlike virtues and strive to the best of their ability to acquire them. If you stumble in that pursuit, so does everyone; the Savior is there to help you keep going. . . ”

And then, in contrast to the pessimistic message of Macbeth, Elder Holland gave this beautiful description of the potential for tomorrow.

“If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children!”

Did you read that? Tomorrow=magnificent. Even if we don’t always recognize it as such.

I’ve got a long way to go. I have a lot to learn about patience. And a lot to learn about humility. I’m finding those lessons are taught in the long, flat, tedious prairies. Not on the peaks.

It snowed the last two days of March. I had to scrape ice off of my car on the last day of spring break. Mrs. H was right. March came in like a lamb and went out like a lion.

It wasn’t an easy month. And April has started out with it’s own measure of sound and fury. We have more milestones: another funeral and a wedding ahead this week. And will still start each and every day with a yucky vitamin.

Snow on spring break of course means a kids meal at Arby's in your PJ's

Snow on spring break of course means a kids meal at Arby’s in your PJ’s

But I’m trying remember Elder Holland’s words:

“So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”

P.S. If you haven’t read or better yet watched Elder Holland’s talk, you really should. It will make you feel happy because it is true.  Here’s a link: https://www.lds.org/general-conference/2016/04/tomorrow-the-lord-will-do-wonders-among-you?lang=eng

Mini summer

So extended school year isn’t really a very full-time summer school option. It’s 2 weeks on and 2 weeks off. So for the past week, Patrick’s been having a mini summer vacation.

We started off it grand fashion. He has really done well in his new summer school classroom. The kids are much more on his level and I feel like he’s making good progress there. The education is focused on maintaining and, at least in the realms of social skills and keeping a routine, it’s going a long way.

The last day before the break, Patrick had his first turn in the school swimming pool. They invited me to come help, just because he has so little experience in the pool. I’m so glad they did! When I got there, he was already dressed for the pool and waiting for me. I’m used to a little boy who is very cautious in the water. I guess he was watching out for his line, because Patrick was NOT afraid. At all. He was extremely brave. I helped him float and worked on teaching him to hold his breath or blow out if his face got in the water. We got him a floating vest and at one point, I turned my back, and he decided to go on his own. I’ll never erase the memory of him laughing as he rolled over and over again in the water.. trying not to inhale.

I’ve been in a better summer mood this week. I finally made Patrick’s 6th birthday video, 6 months late, as a father’s day gift for Brian. You can view it here. I’ve put it off because it was too hard to look at the life we’d left behind when Patrick went for transplant while he was still recovering. I thought I was in a better place. I was. It was therapeutic. It was also still hard. It made me miss last year’s summer school adventures. It made me miss him having friends. And it made me miss the days before steroids where disappointments didn’t lead to big temper tantrums, leaving me fearful of doing some things. I actually had nightmares all the time I was working on the video.

But, with it done, I was ready to dive in and make this a good summer, too. I’m still not as organized and awesome as Mommy school. But we’ve done some good things. We had a picnic at Red Butte Garden. We took a cousin and visited the children’s museum. (Called and asked for suggestions of a less-crowded time to visit and enjoyed being there without fighting a crowd.) We’ve toured a few different libraries.  We finally started collecting brag badges. We mixed up our lunch routine and went to Liberty Park where we started out just eating hot dogs, but stumbled across their wading fountains and ended up staying 3 hours just because.

It was triple-digit heat all last week so I decided that, with the success in the school pool, it would be a good time to get out the backyard swimming pool. This went better than I expected. First, the neighbor’s 10-year-old who often comes to play and help me with Patrick, helped me fill up the pool and taught Patrick how to play in it. I tried putting sunscreen on my own back with spray sunscreen. I haven’t been that burned in years.

The next day, we invited the boy across the street to come play. This was much more on Patrick’s level of play and they had a great time together. This little boy only just barely became a big brother, so there was lots of coaching for both of them about how to play together. But they had successful pool noodle sword-fighting, basketball, water fighting, and general splashing. In the end, I had to call it done because it was well past lunchtime, but neither boy wanted to be done.

Patrick actually spent the rest of that day in the pool, too. He is loving being uninhibited in the water. I love being able to share something I love so much with him.

Alas, though, nothing is perfect. I accidentally pulled Patrick’s g-tube out the day before his first time swimming and it bled a little. We have had off and on g-tube infections since and I’m sure that it’s from spending so much time in the water. Thank goodness it’s supposed to be a cooler, rainy week so I can get away with taking a few days off to let it heal.

The other big event of a summer break is that I decided it was time to work on potty training. I took Patrick to K-mart and let him pick out a pair of big boy underwear the last day of summer school. The next day, I woke up with a migraine, but he was excited to wear them. So we plunged ahead.

He made it through all 5 pairs of underwear in 2 hours, trying his best to “hold it” in between small accidents. I gave him lots of goldfish crackers and praise and did my best to keep things fun and happy. But he was still discouraged. The session ended puddles and a frustrated little boy. I’m pleased to report his mommy stayed calm and positive.

The next day, when I pulled out his underwear, he cried and threw a tantrum that he didn’t want them. But I reminded him it was only for the morning and that there were prizes waiting. After several tries, he finally went in the potty and earned the water gun I’ve been dangling as a carrot for months. The light went on and the next day, he made it several times, staying dry for half the day.

We took the weekend off, and then started again on Monday. I think he’s actually getting the hang of this. We still aren’t accident free and today is the first day I’m trying underwear all day. I don’t know how it will go to have them trying to potty train when he goes back to school next week. I still haven’t tried using a potty away from home. We might need the next long break to solidify what he’s learned. But so far, things are going better than I expected. Now if only I can convince him that this is the better option for him.

(Note: I know this is a long gap without pictures. But I am trying to not post pictures my son will find embarrassing someday when his girlfriend finds this old blog.)

We had a simple 4th of July. The evening was spent at a barbecue with my family. We’d decided to not push Patrick’s limits this year by participating in my family’s huge fireworks. Turns out, that was a convenient choice as it started to rain right after we ate. We left in a downpour but made it home with just a little sprinkling, so we decided to go ahead with our smaller fireworks. (We bought a small pack of fireworks, plus a couple of fountains specifically labeled “silent” so he wouldn’t be scared by the noise.) Who’d have expected, after years of miserable 4th’s and Patrick terrified of fireworks that, on this smaller scale, Patrick would be in love with fireworks. We had to stop and go inside for half an hour because of rain, but when it let up we went out and lit more. He was very upset when he found out we only bought enough for one night.

The rest of the day was simple. Brian hosted a barbecue for his team at work Monday so we spent most of the weekend deep cleaning the house and prettying up the yard. It feels really good to finally have cleaned up some of those messy corners and piles that have been haunting me for being undone since we got home in February. And I caught a clearance sale at the greenhouse down the street. So I got 3 healthy cucumber plants and two basil for free, some adorable patio pumpkins, eggplants, and yellow zucchini as well as a 3 pack of bell peppers for virtually nothing.

Isn't this tiny eggplant adorable? And the flowers are so pretty!

Isn’t this tiny eggplant adorable? And the flowers are so pretty!

Then, we went back later for some miniature sunflowers to fill in the front bed where our irises grow in spring. Brian wanted to plant giant sunflowers from seed earlier this year. We planted a seed in a family home evening lesson about faith. They are as tall as me now. So tying in little sunflowers in the front yard seemed the perfect touch. I’m in love with my sunflowers this year.

I also happened to listen again to this wonderful sermon this week, which only made me more in love with them. The Lord is My Light by Elder Quentin L. Cook, apostle

One of the remarkable characteristics of young wild sunflowers, in addition to growing in soil that is not hospitable, is how the young flower bud follows the sun across the sky. In doing so, it receives life-sustaining energy before bursting forth in its glorious yellow color.

Like the young sunflower, when we follow the Savior of the world, the Son of God, we flourish and become glorious despite the many terrible circumstances that surround us. He truly is our light and life.

We’re plugging away. The stress of having Patrick will me full-time when paired with the Brian’s very busy summer planning handcart pioneer trek reenactment for the teenagers in our church has me running a little ragged. I’ll be honest, when paired with facing my feelings about what we’ve lost, I’ve had more trouble with anxiety and depression lately. So  looking to sunflowers as a symbol and reminder of life-sustaining faith and hope, even in the midst of a week where popular voices are calling it old-fashioned, hypocritical, and even bigoted to believe in Christ.. that is helping to lift me up. My sunflower plants really do turn and follow the sun all day. I see them every time I come and go from my house. And each time I do, I remember that it is worth following light, even before flowers bloom.  That little seed of faith we planted is as tall as I am and growing more, so long as it follows the light.

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One more week of summer awesomeness ahead. This week, we’ll resume our mommy school studies, try to earn a brag badge a day, wear underwear all day, and try to get daddy ready for Trek.

April and some Easter reflections

Happy April! Don’t you just love April? It is teeming with new life. The trees are in blossom. The tulips opened this weekend. There are little green shoots poking up out of the soil in all of the gardens around my yard. There are birds nesting in the eaves of my house. (No, that’s not necessarily a good thing.)

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April and spring also bring us Easter. A celebration of Christ’s victory over death. And spring surrounds us with reminders of the Lord’s power to bring forth life. To turn what appears dead and gone into glorious beauty. It as if all of nature is shouting the promise of renewed life.

April is also national Donate Life month. This year, with our family’s transplant journey fresh in my mind, I can’t help but see lessons about Easter and Christ’s atonement in it. I thought perhaps I would share some of those thoughts with you.

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Restoration

In the Book of Mormon, a prophet named Alma describes the resurrection in these terms.

The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame.  – Book of Mormon, Alma 40:23

I used to say that I looked forward to the resurrection because Patrick and I were going to have a week-long feast. With a perfect body, I want him to be able to taste every wonderful thing that he has missed experiencing in this life.  I never imagined that to be even remotely possible in this life.

And yet, since transplant, Patrick is getting to do just that. He is finally able to begin to experience some of those things. It is incomplete. Allergies and diet restrictions and motor deficits from his brain injury still limit him. And we will still need to have our feast.

Transplant is not a perfect restoration. In fact, an x-ray or ultrasound of Patrick’s belly would reveal an anatomy that looks more like a jury-rigged mess. But it is the closest approximation that I know of in this life.  Transplant takes what is broken or missing and puts things back to their “proper” frame.

And seeing what a transformation this human attempt at restoration can bring, I look forward with joyful anticipation to a day when not even a hair is missing, let alone major organs. When everything is made right. When little eyes can focus to read without effort. When words don’t get stuck in formation. When little legs can run without weakness. When everything is made whole and perfect again.

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Resurrection

There is one part of transplant that I have a hard time understanding. When Patrick was 9 months old, his heart stopped. In essence, he died in my arms. For 2 weeks afterwards, we came back to our house every night not knowing if he would survive. I was destroyed. I had not understood until that time the literal physical ache of grief that accompanies the loss of a child.

Yet somehow, in the midst of that grief, another family found in the midst of that grief the compassion to give the gift of life to mine. Before transplant, Patrick was terminal. We didn’t talk about how very real that possibility was because we didn’t want it to get in the way of his living the life he had. But we knew. We had made plans and were preparing to one day have to let him go.

With transplant came something different. A hope of a full and long life. A gift that rose out of the grief of loss and death. And, in a very real way, Patrick’s donor also lives on in him.

Again, from the prophet Alma:

And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. – Book of Mormon, Alma 7:12

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Our Savior voluntarily laid down his life. He suffered pain and sorrow so great he bled from every pore. He hung and he suffered and he died. For us. His mother and his friends wept as they watched him die. They laid him in a tomb and they went home mourning. They wondered how and if they would be able to go on. And all of it. For us.

And on the third day, the returned to find the tomb empty. Because Jesus had risen. For us. He overcame death. And because he rose, we will rise. And death is not forever. Loss and sorrow and separation need not last forever. Because of Him.

I see in transplant a whisper of this promise. It is possible to conquer death. And I know that Christ has conquered death and that my son, if he dies, will live again. And so will his donor.

O death, where is thy sting? O grave, where is thy victory? – 1 Corinthians 15:55

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Weakness

If you are a medical nerd like me with an interest in transplant, I highly recommend that you sometime read the autobiography of Thomas Starzl, the inventor of transplant. It is called The Puzzle People and it is fascinating to read the journey, the determination, the trial and constant failure that led to this amazing medical breakthrough. It was an amazing confirmation to me that God inspires science and discovery and he leads human beings to be able to master the eternal laws that govern the world we live in.

I’ve learned that in science there are also important eternal lessons. And in transplant, there is an important lesson taught about weakness.

You see, in his early experiments, Dr. Starzl found that he had mastered the surgical technique of transplantation. And yet he struggled as recipients rejected the life-saving organs because they were foreign and seen by the immune system as a threat.

Transplantation did not move from the realm of science fiction into medical science until Dr. Starzl discovered how to use immunosuppression to weaken the body’s defenses enough to accept the transplanted organ. Transplant of larger, more complex organs wasn’t possible until the discovery of a drug called FK506, better known as Prograf, that could weaken the body’s natural immune response enough to protect the transplanted graft. The reason that intestinal transplant is so new and so rare is that the intestine is so large and so intertwined with the body’s immune system that it took such a high degree of immunosuppressive therapy.

In layman’s terms, in order for the body to accept a change as large as transplant, it first had to be made weak. Weak enough to be susceptible to infection and illness.

For the week following transplant, Patrick stayed in the ICU so that he could be given a drug that completely wiped out his immune system. It removed it so completely that they then prescribed him a year of antibiotics, antivirals, and isolation in order to try to protect him. All of his defenses were removed. Because that is the only way to prevent his body from immediately rejecting the gift he had been given.

The apostle Paul wrote about an unnamed affliction that plagued him for years. He frequently prayed and asked for this “thorn in his side” to be removed. And yet, it never was. After much time and certainly much struggle, he recorded the Lord’s response to his pleas.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. – 2 Corinthians 12:9-10

Sometimes, the Lord gives us strength through weakness. Sometimes he leaves us with a thorn in our side, with prayers that seem unanswered, with trials that seem neverending. He does it because sometimes the only way for us to be prepared to receive His gifts.

But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

All we like sheep have gone astray; we have turned every one to his own way; and the Lord hath laid on him the iniquity of us all. – Isaiah 53:5-6

Christ atoned for the sins of the world, taking upon him every sin and sorrow and transgression. But what good is that gift if we, thinking our own defenses are strong enough, reject His grace. Sometimes, it takes weakness first for God to work the change in us that will make us strong. Not all healing is painless.

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I am so grateful for Jesus Christ. For His resurrection. For His atonement. For His grace and for His love. I know He lives.

I see reminders of His gifts and His promise of life all around me. In the tulips and the tree blossoms. In tender shoots in garden beds. In the sparrows. And especially in my son.

We are doing well. Patrick’s responded well to the antibiotics he was started on last week. His liver numbers are normal again. We are still giving IV antibiotics. Therefore we are sleepy. But we are happy. And we are healthy. We had a great Easter full of bunnies and feasting and magnificent sermons. This life is not always easy, but it is good. We are blessed.

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

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

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

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

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

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

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

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

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

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

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

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

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

So it’s different, but it’s home.

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

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

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

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

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

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

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

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

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
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Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

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

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

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

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

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

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

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

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

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

 

Transplant Day 82 and golden tickets

 

Daddy is back!! Brian got back into town Saturday evening. Patrick couldn’t have been happier. And we’ve stayed busy all weekend.

Mostly, we’ve been busy cooking. If December is the most charitable month that they see at the Ronald McDonald House, January is its leanest. This week only had a couple of dinner groups scheduled. But there are a lot of donated turkeys and hams left over from the Christmas season. So last week, after having pretty good success last week making a ham and having the rest of the house help make side dishes, they offered us a turkey.

Sunday, we Brian helped get a turkey in the oven, and let’s be honest, did more than me watching it to make sure it came out ok. And then yesterday, we went shopping and got ingredients for Brian to cook pasta for the whole house, too. I’m wondering if he’s frustrated with having cooked large meals for large groups of people his first two nights here.

But the food was really AMAZING. And right now, there are only a handful of families living in the house who don’t have kids at the hospital and so if someone is going to be cooking, it is going to be us. It feels good to know we’re helping other people with something that we knew makes such a big difference. And we like the company for dinner, too.

Grocery shopping was just one of our adventures yesterday, though. Because yesterday was a holiday, Brian suggested that we treat it like one. So we went to the zoo. It has been beautiful here the past few days. 50 degrees or better. And so the zoo, of course, was crowded on a day off of school. However, it also meant that there were a lot of animals outside which made for a fun and different zoo experience. We got to see bears and rhinos, which have been inside on our last few trips to the zoo. And since we have been going often, we didn’t feel like we were missing out on some of the more crowded indoor exhibits.

And then, since going to the zoo wore him out, Patrick came back and even willingly took a nap.

Today Brian had to work again. He goes to the computer room down the hall where he can video conference and code. We meet for lunch and then he’s off at dinner time.

Meanwhile, Patrick and I went to feeding therapy this morning. Today, we took some lunch meat ham and the goal was to get Patrick to swallow some of it. It actually worked and Patrick is really excited about wrapping cheese in ham now. He swallowed some ham sandwich, too.

Then, we went grocery shopping. Patrick’s been anxious to go back to the store with kid sized shopping carts. So we went today to pick up some of his staples and to let him spend his tooth fairy money.

That’s right, Patrick lost his second tooth this week. I have been worried. It was loose, but an adult tooth had grown in behind and it still wasn’t coming out. Well, he’s fallen in love with his electric toothbrush and brushing his teeth. And a couple of nights ago, he brushed that loose tooth right out. It took some hunting and sweeping to find the tooth, but we did find it. And it only took a little convincing to persuade him that brushing his teeth wouldn’t knock them all out.

The other new thing this past few days is that there is another kindergarten age girl in the house right now. Her mom has been trying her best to keep her caught up with school work. We decided to try to combine forces. So while we wait for dinner each night, I bring down some of our mommy school things and they study together. They both are staying and working longer this way.

In other news, Patrick’s ostomy incision finally healed enough to not need to pack it with gauze anymore. Just cleaning it and covering it with a bandaid. And that means he can shower. He’s not too excited, but I feel like he gets so much cleaner that way than sponge baths.

Tonight is the first we’ve tried going without a nap since Daddy got into town and I’m questioning my choice. Patrick has been very grumpy. But it’s a tricky tradeoff between sleeping at night and being nice during the day. And I haven’t found a balance that makes him feel good enough to ignore the side effects of his medications. He’s either too sleepy or not sleepy enough and either way he is usually either angry or bouncing off the walls.

I keep thinking that we are going to finally get a routine and get past this. Sometimes I think that we just need to hang on and get home and then things will get better.

But in church this week, they said something that really struck a chord and I’m trying to put it into practice. The speaker reminded me that always waiting for something next to be happy doesn’t usually result in being happy. It just means always waiting. As Dieter F. Uchtdorf taught:

So many people today are waiting for their own golden ticket—the ticket that they believe holds the key to the happiness they have always dreamed about. . .

There is nothing wrong with righteous yearnings—we hope and seek after things that are “virtuous, lovely, or of good report or praiseworthy.”4 The problem comes when we put our happiness on hold as we wait for some future event—our golden ticket—to appear. . .

The happiest people I know are not those who find their golden ticket; they are those who, while in pursuit of worthy goals, discover and treasure the beauty and sweetness of the everyday moments. They are the ones who, thread by daily thread, weave a tapestry of gratitude and wonder throughout their lives. These are they who are truly happy.

Read the full text of this amazing talk here.

So today, when I feel homesick, I’m checking myself and trying to be grateful and productive and happy in the moment I have been given.

Transplant Day 70 and real-life angels

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.

 

Transplant Day 56 and Christmas Day

We had a very unique, but very amazing Christmas day this year.

It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.

Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.

Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.

I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.

We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.

But when he did see them, that’s all he wanted.

We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.

I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.

Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and  gifts donated through the hospital and  the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.

A phrase from a verse in Malachi kept running through my head.  Malachi 3:10:

“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”

Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.

After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.

Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular.  I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.

And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.

We ate well and then had to reign ourselves in because we knew we had other plans.

In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.

Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.

While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.

BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.

But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.

And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.

I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.

And we, through the ordinary people, have seen the hand of the Lord this Christmas.

Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.

Transplant Day 48 and some Christmas Cheer

It’s been a busy couple of days. Without labs in the morning, I’ve been trying to work on a little bit of a better sleep schedule.  I don’t know that we’re getting more sleep, but at least we haven’t been up till midnight.

Yesterday we didn’t have labs and Patrick actually slept till 8 a.m. Then we took our sweet time getting ready and out of the room, which is always nice. It usually means I get some cleaning done.

Because Patrick had slept so late, I decided to try out skipping nap.  That meant I needed to keep him entertained for the day instead. I stole a little bit of internet time in the morning while he played in the playroom and I downloaded the new homeschool curriculum I want to use for “mommy school.” (I’m using Reading the Alphabet, if you are curious.) Then we came upstairs and I printed out a little reader to practice with and a reader.

Patrick was so excited to do mommy school. I think he’s feeling as bored and stir crazy as I am. He mastered his book in about 5 minutes. The series I’m using is a sight words preprimer series.. So pretty basic stuff. Just sight words mixed with pictures that he should be able to decipher. This is what he was using in school before transplant so it seemed like a good place to pick up. It’s probably a slower paced curriculum than he’d be getting in a typical classroom, but i figure that anything is better than 3 or less hours a week and the pace seems to match his learning style. Once he had mastered his book, we did a little bit of writing practice with the word of the week, (“a”) and the letter of the week (“Tt”).. and then we took his book to practice reading to other people. Both he and they love this method of practicing reading. I have the feeling that taking his books to the office staff to practice is going to be pretty par for the course.

After a little bit of resting/cleaning time in our room, we got ready for the evening’s excitement. Last night was the hospital’s annual pediatrics Christmas party. A company called Renaissance financials hosts this every year for the inpatient and outpatient pediatric patients. That means that you don’t have to be in the hospital to be invited. They know there are a lot of us here who’ve traveled quite some way and will be here long-term.

The party started with a magician. It’s amazing to me to see Patrick old enough to appreciate these things. He laughed and was awed by the tricks. He really wanted to be a helper, but didn’t raise his hand to say so.

After the magic show, we found our tables and worked on making jingle bell necklaces, marshmellow snowmen, and gingerbread houses made out of graham crackers and take out boxes. We were joined there by one of the employees helping to host the party.

That kind of made this the perfect blend of holiday party for me. It had all of the kid-friendly elements that I’m used to from a school or church party. But there were employees and their wives there for their annual company Christmas party, too.. All dressed up. It kind of helped soothe the part of me that is really missing corporate Christmas dinners.

We had a dinner of pizza and breadsticks. Patrick enjoyed some crust and declared the julienned carrots from my salad “perfect.”

And then, they made us all sing Christmas carols. They top this off with a tradition where each of the 12 dinner tables has to make up and action to do to their assigned day of the 12 Days of Christmas. I hope our 5 golden rings had enough flair.

Then, the night was topped off with a visit from Santa Claus himself. They came and called the kids up for their turns one by one so there was no line or crush. Each kid got some personal time with Santa. Patrick took his to open the present that Santa had brought him.. A big noisy 3-wheeled motorcycle that races across the room when you push a button.

Patrick’s attention was gone pretty quickly after his visit with Santa. We snuck out as things started to wind down and ran to the store to get a few things to make some little gifts for the many people we have gotten to know here. (I’m making angel ornaments out of ribbon, a paperclip, and a bead.) Patrick thinks Michaels is the best store ever.. specially since they had little shopping baskets with a handle he could pull like a rolling suitcase.

And then we came back to the house where all the kids were playing with the toys Santa brought. It reminded me of Christmas morning… which makes me really look forward to Christmas. We have lived with these kids for a couple of weeks now and they are getting to be friends. It was fun to see them sharing toys with each other.. racing around shooting each other with nerf guns and taking turns with the remote control car.

It was especially needed last night as one of the families staying in the house lost their son last night. It is hard to put into words the way that a loss like that hurts in a community like this. We understand more deeply than anyone can the pain of that loss and just want to take it away.

Today has been a pretty low-key kind of day. I got Patrick to sleep last night by 10, but that meant he was wide awake and happy at 6:30. He chose to play on his bed for an hour, though, and when he was ready to go was pretty good downstairs.

The grandparents of the boy who passed away stayed here last night and Patrick has been particularly attached to them all day.. Cuddling up with both of them and playing charmer. He really has a way of knowing what people need sometimes.

Then, when he did leave them, Patrick went to visit his friends in the office. He has made this a bit of a morning tradition. I don’t think they mind much. House rules say they are supposed to give us our space.. but if we go visit them, that is ok. Patrick likes to go visit.

Over lunch, Tyson, the 18 year old transplant recipient, took Patrick downstairs to play in the playroom while I showed his mom how to make homemade frosting and how to roll out and cut sugar cookies. (It’s funny how this is something I have just taken for granted knowing how to do. After a lifetime of baking with mom and grandma, going to church activities, doing crafts, and learning other homemaking skills.. I guess I kind of assume that most people have some experience with these things. But they have been wowed by my skills here and it’s kind of a strange feeling. The things you discover when you leave the Mormon belt.)

I got a call this afternoon from hospital social work asking me to come pick up Christmas gifts. While we were still inpatient, they came and asked if one of the hospital departments could adopt us for Christmas.. given how far we are from home and knowing what our co-pays were going to be. We tried to decline and offer this to someone else, but they insisted that we fit the bill to help. So, we made a simple list for them.

What I picked up today was not simple. My trunk is full. And there was a gift card included too that kind of blew me away.

Anyway – once we finished that outing, Patrick asked to try to play at a park. We went, but he got too cold too fast again. So we came back to the house and let him play in the playroom while I paid some bills and then pulled out my new Christmas music books and played on the piano. This is another thing that I kind of have taken for granted in the past. People who play the piano are limited back home, but there’s a few of us in every neighborhood at least. Here, though.. some of the staff say they have never seen this piano used to play actual music. I am so excited to try a sing along.

Next was dinner. One of the drawbacks of the Ronald McDonald House at Christmas time is that all the dinner groups very well-meaningly try to bring in a festive holiday meal. You don’t want to know how many hams have been served here this week. Patrick is loving it, though. Ham and potatoes is one of his favorite meals and he will happily eat it over and over again. It just makes me smile and remember my missionary days when we’d be fed at member houses and we’d see food seasons. I wonder what food season comes after Christmas.

Then, I ended up letting Patrick stay up just a bit late because we decorated cookies tonight. It was so much fun and I was really grateful for Wendy, a mom and friend in the house, and all of the resources and work she put into getting Christmas cookies into the house.  The kids had a great time. Patrick loved it and, yes, I let him splurge and have some frosting tonight. (He’s supposed to be on a no concentrated sugar diet at least until things get a little more stable.)

Our word of the day was “angels”. We read about how angels appeared to sing about Christ’s birth. And then for good measure, I pulled out my YouTube video and watched this awesome video… a record breaker for multitudes of angels in a live Nativity, and heart-touching to boot.

And now Patrick’s finally made it to sleep. I’m thrilled he is asleep before 11 again.. But every night I have grand intentions of getting up and getting to work once he is asleep. I have a couple of presents to wrap and the room needs cleaning and the laundry needs put away. Especially since we have labs tomorrow. But I can barely keep my eyes open. So I’ll be settling on finishing up this post, hunting down an internet connection so I can post it.. and then going off to bed.

 

Transplant Day 46 and Physical Therapy

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Today was a busy day. I knew we’d need to be up early to start out with labs, but last night was another night where Patrick didn’t make it to sleep till midnight. So when he snuggled up next to me and fell back asleep this morning, I didn’t really have the heart to wake him.

At 8, as my alarm was going off after the 3rd snooze, I decided we were going to have to bite the bullet and get up. I could tell that sometime during the night Patrick’s ostomy bag had come loose. Thank goodness I’ve got a good drain system set up so it didn’t make a mess that woke us earlier. But it did mean that we had to start off with a bag change right away.

Patrick wasn’t so sure of me when I put him in the tub without waterproofing his bag.. But it actually worked very well to make it come off quite easily and changing the bag went very smoothly. But we were really pressed for time so when the phone rang to tell me they were showing his nurse up, he was still quite naked and wrapped in bath towels.

We hurried to get a diaper on and wrapped him up in a blanket and the nurse was able to draw his labs. Meanwhile, my phone rang and it was the pharmacy. It’s been one week since discharge. Time for a new shipment of supplies.

When we got through all of that, it was already 9 a.m. I begged Patrick to stay on the bed and watch Blues Clues and let me run downstairs for his medicines alone so it could be faster. He agreed and we were able to get all of his medicines given on time. But in the meantime, he was a lot happier in the room watching TV than he usually is trying to entertain himself while I do up meds in the morning. In fact, he happily stayed and played and watched TV for another hour and a half.

That gave me time to clean up the room a bit and to set up the printer that my mom and dad bought me for my birthday. (I knew I’d want to do Mommy School here so that was one of my first wishes.)

Finally, I was hungry and he needed formula made so it would have time to chill before starting the new batch running and we had to give in and leave the room. Besides, Patrick needed me to buy him new socks. So we went downstairs and got ready and went to Target.

Let me tell you about why Patrick needed new socks as it brings you to the next part of our day. If you are new to our story, you may not know that Patrick has an anoxic brain injury and cerebral palsy. When he was 8 months old, his heart stopped because of an infection and some medication they were using to treat it. It took over 15 minutes of CPR to revive him. The result is that the ends of all of the blood vessels in his brain were deprived of some oxygen. That accounts for a lot of his behaviors and most of his developmental delays and learning disabilities.

When you hear the phrase “cerebral palsy” you probably imagine someone with a very severe case whose body is contorted with muscle spasms: someone who can’t eat, can’t talk, can’t walk, etc. That is what you imagine because that is the presentation that you can’t ignore so you ask about it. But what cerebral palsy really means is that at birth or shortly thereafter, the brain was starved for oxygen, leaving the patient with a “palsy” or lack of control of the muscles of the arms or legs or more. The signal from the brain to these limbs gets confused or altered somewhere along the way causing unexpected movements, often causing the muscles to spasm.

Well, over the past week, I have seen Patrick’s hip and foot of his right foot turning inward. He is becoming more clumsy and having  a harder time controlling those muscles. I started making him wear his walking brace for half to all of the day. (Enter the need for new, longer socks that would prevent rubbing from the brace against his leg.) We’ve been doing stretching, too, and those muscles are much tighter than they have been in years.

Today after shopping and a short nap, I took Patrick for a physical therapy evaluation in the hospital’s outpatient clinic. I wanted to evaluate his recovery and I was especially worried about this problem with his gait.

The news was good. First of all, Patrick is a “rockstar” from the physical therapy standpoint. His incision is better healed, his movement is better, his pain level is less, and his energy is more than most patients at this point. He is really doing remarkably well.

The therapist said that she thinks that the spasticity in his leg is likely a combination of problems: the trauma of transplant, the effect of new medications, the exhaustion of recovery. In other words, she said that it’s probably something that he’s feeling all over, we just are seeing it more in his leg because that is where he is weakest. She said that for every 1 day in the hospital, we should expect 2 days for his body to recover. Considering that he spent 39 days in the hospital, it will be a few months before he is back to full strength.

The prescription is simple. Keep doing all of the exercises we were working on at home for leg strengthening like climbing stairs, squatting and tiptoes, bike riding, jumping. But, for the next little while, have him wear his brace so that while his nerves and muscles are relearning and recovering, we are training his body to move the right way. Patrick is not amused by this prescription. He keeps asking me to let him take his boot off because he feels like it’s in his way.

The therapist said that she is seeing such progress in the area of gross motor skills that, given our insurance policy’s very limited therapy visits, that she feels like physical therapy would not be her focus right now. She recommended instead that we take advantage of the opportunity to work with an occupational therapist who specializes in feeding in kids post-transplant while we are here.

She also said to allow him lots of rest. And I think that I realized today that doing so may require a little more keeping him in our room. When we hit our room, all of the sensory overload caused by the rest of the house melts away. He is happy watching TV and doing crafts. Tonight it finally clicked for him that the tote in the corner is a toybox and that he is allowed to go get those toys out and play with them.

I don’t know for sure. We’ll need to find a balance so he gets social time, too. We both need it. But we both were much happier with some quiet, one-on-one free play time in the room.

We had another special treat tonight. One of the men from our church who helps bring the sacrament has talked for a while about inviting us over for dinner. Well, tonight, we got the chance. That was really such a treat! Patrick had a great time playing with their two little ones (ages 3 and almost 5). I spend some time with some other adults about my age whom I have a lot in common with. And just take a break from all of this medical stuff for a while. But also, without a ton of explanation. He has been visiting for a while now. He was also the anesthesiologist on Patrick’s case the night of transplant. So they know the story and some of the things they should expect. It was good to just be normal for a little while.

We were both sad to see the evening come to a close. But it was bedtime and we needed to unwind to go to sleep here, too. Setting up my printer meant I also set up a place my laptop can sit next to the TV, so we were able to turn on one of the new DVD’s that Brian’s parents sent him. We watched Curious George’s Christmas while I cleaned up the room, prepared feeds, drew up medications, and got Patrick into his pajamas.

He made it to sleep by 10:30 tonight which isn’t the greatest, but is better than midnight. He also is starting to prefer to go to sleep in his bed on his own. He won’t admit that. He would love for me to lay with him. But he has started to do his usual putting himself to sleep routine if I’ll just lay with him for a bit, then tell him it’s time for met o kiss him goodnight. I kiss him and go lay in my bed until he falls asleep. Then I get up and try to get done whatever was waiting for him to rest.

Tonight while I waited, I decided to poke around Pinterest for kindergarten homeschooling ideas as Patrick’s teacher was still sick today and an hour a week of school is certainly not getting him the education he needs or that his little mind is craving. I am thrilled to say that I stumbled across a curriculum that looks like it will pick up exactly where he left off at school and that really fits his learning style. It even has little printable readers. (I’m trying to decide if I print them or see if it’s possible to throw them into an e-reader format to save on printing). I’m excited to grab a little bit of playroom time tomorrow morning so I can get it downloaded and start working on it.

One last bit of news, then I have to post this and get to bed. My eyes are drooping. Patrick’s transplant coordinator called this afternoon. The great news is that his prograf level is finally in range. Just barely, but it’s there. That’s the first time in a week. That means no medication adjustment. It also means that we get to switch to twice weekly labs. And THAT means that we can sleep in in the morning if we’re tired. At least till meds are due at 9.

However.. you probably wont’ get to read this until then because I am just plain too sleepy to go hunt down an internet connection until morning.