baby maximus: cries, crutches, and thank you's

Today the clinic and therapy appointments took three hours.  There was a lot of waiting but there was also a lot of bending, poking, and wrapping.  They made Maximus a cast for his left hand to try and keep his thumb from contracting.  

By the end, all three of us were irritated.  A mint brownie would have made me feel a teensy bit better.  But they didn't have any today.  And that kind of set the mood for the rest of the day.

And the end of the day looked like this: 

He is already tired but he isn't allowed to sleep yet because there are still stretches and dressing changes.  And forcing the ibuprofen to help with pain and swelling.  He hates all of it.  By the time it is over he is inconsolable.  Maximus is laying there, trying his best to scratch his itchy donor sights with his cast.  He is crying and screaming.  Karl tries to sooth him.  He won't be soothed.  I give it a try.  It seems it is even worse.  I try to hold him and he wrestles out of my arms.  I try and read to him and he bats the book out of the way.  I try lotion on his legs.  He still itches.  I try a cold pack and he would have none of it.  He rolls one way and another.  Every move I make seems to make him even madder.  I finally lay him in his crib and walk out.  And feel like I am heartless but know that I am helpless.  In just a few minutes he is quiet.  We know he is sleeping.  But this routine is a far cry from the simple bath, story, blow a few kisses and tip toe out.  I miss that routine.  I am sure Maximus does even more.  And when I have nights like this, a little bit of  black kind of seeps into view.  He doesn't understand why we are hurting him.  

So maybe my emotions are high but tonight I started thinking about how people are so willing to help Maximus, it kind of sent my mind spinning.  It is a mix of emotions.  Gratitude being the greatest, of course.  

I remember when I was nine and my friend broke her leg and she had to have crutches.  We all thought they were so great.  At recess we would line up and take turns using her crutches.  We would take turns carrying her books and her lunch tray.  And when we all had to sit on the floor for the assembly, she got to sit in a chair.  So I secretly thought it would be so fun to break my leg so I could have crutches all the time, and have someone carry my stuff, and sit in special places.  Idiot. 

 I obviously had it all wrong.  She was miserable.  And she couldn't move around because she was letting her friends play with her crutches.   

Boy oh boy, did I have it wrong.  Now we are the ones with crutches.  And it kind of sucks a lot.  It is not awesome or romantic at all.  As much as this threw our life out of whack, people are helping to put it back into whack :).  People are doing things for us that we can't do right now and it's kind of a feeling that I can't even identify.  Man, people are nice. 

I am grateful that I have little Maximus.  I have said before that he brought peace into the world when he was born.  I really believe that.  But now I see that it was more than just peace.  He draws out the good.  Because of him, I get to see how good people are.  I always kind of knew.  But now I really know.  And I also know I don't even know the extent of it.  I want to know all of it because I want to give credit and be thankful.  But maybe this is a lesson for me to learn to be thankful for more than I know.  But, really, if you are reading this and you are one of the people that have been sending out good on our behalf, I want you to know how grateful we are.  When I think of these things, I feel like it literally lifts me up.  I hear of the good, and it seems to help sweep the black out of sight.  As Maximus grows up, he is going to hear how much people rallied to help him and his family.   When he looks at his hands, I hope, somehow, it reminds him of how much he is loved.

And as if my heart wasn't already warmed up enough, just look at this.  Karl's mom got this photo of Maximus giving his great grandma kisses.  

the zoo

Maximus is doing well.  He is his happy self.  

We have been back a couple of times for follow up appointments.  They remove the bandages and I see dark skin, splotchy skin, cuts and marks and they say, "Oh, it looks good."  So, I guess the surgery worked and his left thumb will have more movement and his right pinky is not getting pulled as much.  

But his hands look so different from each other.  His right fingers look long and skinny and his left fingers look so short and stubby.  The scars on web spacing seem to be creeping up and the fingers are getting curled down.  And I guess we are supposed to stretch it into the right shape.  No pressure here, right?  

 And meanwhile... the summer goes on.  We have new airlines tickets for the 10th of August.  The kids are missing their first days of school.  Neither one of them seem heart broken about it.  Maybe it's because we are packing in as many memories as we can and doing things we can't do in Kauai like go to the dollar movies, or the amusement park, or big malls, or yummy Mexican food, or museums, or the zoo.  We actually hit the zoo before the second surgeries.  But I just barely downloaded the photos.  Because that's kind of how the summer has been.

These were good memories.  

Maximus watching sea creatures.  With the contrast of his pressure gloves with the blue water background.

The full shot.  I lost one of those sandals somehow on a road trip to Logan.  And I lost one of another pair on a walk to the grocery store.  And he wore through his last pair.  I mourned it for a little while.  Especially the hand me downs.  Maybe silly, but I just love it when something like a little leather sandal is quality and timeless enough that several little kids get to wear them.  But I guess I know how to lose a nice shoe just as easily as I can lose a crappy shoe.  hehe.

I know that there is a sciency explanation for why this cute polar bear's head is so far from his body, but since I am not a scientist, I just think it is plain funny.

I have been taking photos here ever since I knew what photos were.  And now I have a whole family to compare to apes.  

 My Samuel boy.  He seems to be at an age where sometimes I expect him to act so much older and sometimes I am so sad that he is already so old.  He still gets embarrassed in front of a camera.

 My Eva girl.  She does know what to do for a camera.  Still so innocent yet so mature in so many ways.  Her sense of humor is really budding and she makes me laugh all the time.

These two have been getting their photos taken on this elephant trunk since they were so tiny.  I made them climb pose here.  I am excited to find the old photos to compare.  I love doing that.

So, Maximus is healing.  Maybe not in the best way.  But I hope it will get better.  Hope hope hope.  And nothing like a trip to the zoo to remind me how much older my kids are getting.  

Baby Maximus: back in the woods

It was one of those therapy appointments where you could hear Maximus screaming all the way to the elevators.  Simple stretches like having him straighten his right arm, or bend it to touch his head, or straighten his left hand, motions that I take for granted, were hurting him so bad.  

The physical therapist said she was worried about his left thumb.  The scars were contracting and pulling his thumb in.  She was worried it would pull his joints out of socket.  His whole hand was looking and feeling more like a tough tiny little baseball mitt than the soft chubby hand I used to hold.

We had a clinic appointment next and the doctor came in a took a look.  We had never met this doctor.  He took a look at Maximus' hands and asked us if we had been doing any stretches.  He took a look at Maximus' scars and asked if he had been wearing compression gloves.  That wasn't what we were expecting to hear after all of those hours of work and pain (and tears, and whimpers, and complete exhaustion).  It was discouraging to say the least that there was no sign of our work.  And this is where I figure that they might not give doctors personality tests before they let them into medical school.  Because his bedside manner left us feeling horrible. And then he told us that he needed to do surgery on Maximus' left hand to release the thumb and the curling of the palm.  He was going to have to cut his hand and graft his skin again.  

That was Tuesday and we scheduled the surgery for Thursday.  Recovery was estimated to be about three weeks.  We were planning on going home in a week.  Plans change again.  School is starting on July 30 and the kids are probably going to have to miss that.  We haven't figured out just what to do.  I love decisions (said in my most sarcastic voice ever).

Early in the morning.  Suited up for surgery.  They gave him some drugs to sedate him.  You know how they say it will bring out your strongest traits?  Now we know that Maximus is a loving drunk.  Blowing kisses right and left.  To the cleaning staff, the nurses, the doctors... even planted a big one right on the lips on one of the nurses.  It was hilariously adorable.

Oh, and the anesthesiologist and Karl recognized each other.  Turns out they were from the same town and that Karl's mom taught him in fourth grade.  And let this be a lesson to teachers all over that it's best to do a good job (like Karl's mom did) because you never know if one of your students will some day be in the operating room with your grand child.

Surgery didn't go as planned.  They got in there and decided it would be best to do his right hand, too.  The scarring was pulling his pinky and they needed to release that, too.  But no complications.  Phew.  And who can charm an operating room full of people even when he isn't awake?  That would be Maximus.  

So it was back to double muffin teddy bear paw boxing glove club hands for Baby Maximus.

And when he woke up the first thing he did was remember how bad he hated the monitor on his toe.  And quickly started to try and remove it.  

We got to come home as soon as he could hold food down.  Which he did like a champ.  And after a monster nap, he was ready to play outside.  And not having hands did not slow him down a single bit.  Recovery at home is so much easier than recovery in the hospital (well, at least when there is no oozing stuff.  Gross, I know).  Playing on the trampoline (not jumping) on the trampoline and getting super hair with your sister is so much better than being hooked up to a bunch of beeping machines.

And speaking of hair...

Maximus gets the best bedhead ever.  

He wakes up angry most mornings.  I don't know if it is because of pain, or discomfort, or what.  But balloons from his sweet cousins totally cheered him up on this morning.

In his rage, he chose to be mad at his shirt. So, he went shirtless for a while.  Simple solution.  In HI he does all the time.  But here, I feel like I need to explain.  Here you can see that it looks like they extended his arms about 6 inches.  It is just the bandaging. 

But the extra bandaging gave him leverage.  One night when he was sitting on my lap he stuck his giant club between his knees and pulled.  Out came his freshly grafted hand.  And his club remained between his knees.  Want to ever see me panic?  Do that.  

Being back to zero hands, his toes are once again are extra useful.  He has to use lots of lotion for his new skin.  He is getting used to putting it on.  And has started to like it.  

Here is his face.  Happy and fully moisturized.

He goes in tomorrow for dressing changes and we will know more of what to expect.  At this point we realize his hands will never look the same and are just hoping for, someday, after tons of therapy, full movement of his hands and arm.  Okay, okay, and maybe I'm hoping a different doctor will be there tomorrow.  

our stories, our bad days

I started this post a long time ago and never found a way to finish.  But it keeps floating in my head.


My world is getting a little bigger in ways that I wouldn't have necessarily asked for.  If Maximus wouldn't have gotten hurt, then my world of understanding medical situations would have stayed smaller.  My eyes get opened to so many more cases.  My heart gets opened, too.


I get updates on a little boy that is about Eva's age that has leukemia.  It tugs at my heart in so many ways.  Or how about my friend whose husband has leukemia?  So many stories.  Or how about the stories that don't get to get shared.  Or if they do it's with a promise of secrecy in hushed tones.  Ones about relationships, or betrayal, or illnesses where the enemy isn't always defined?  Those stories don't get publicly supported so much. Even though those are the ones that may need it the most.  


I am grateful that this is a trial where I can talk openly and the solution is so clear.  I know not all trials are like that.


 A few weeks ago, during the thick of things back when Maximus was still in the hospital, my friends pulled together an emergency outing of sorts.  The kind where we gather, and probably eat, and then they give me the conch and I talk and talk and talk and the listen, listen, listen.  Nice, huh?  It had to be at 9:00 at night because with all of our mommy responsibilities, that is the only time we could all meet.  One friend handed me some money and said some was from her friend that lost her husband to cancer and some was from her little girl who has been selling snow cones.  Both wanted to help baby Maximus.  Now those are some stories.  


We were waiting for the rest to show up.  All those stories of all these people were swimming in my head.  


A lady asks, "Do any of you have a cell phone that I can call long distance on?"  and then puts her face in her hands.  She lifts her head to say, "This has got to be the worst day ever." and returns her face to her hands.  My friend goes to her and shares her phone.


The worst day ever.  There are lots of stories going on.  I kind of braced myself.  


After she hung up, she returns the phone and explains that she was from out of town and her husband left her make-up bag at home and she had a wedding to go to (not her own) the next day.  That explained her little bag of purchases from the make-up store in the mall.


That was it.  That was her worst day ever.


Here I was, holding cash from a mom my age that has just recently lost her husband to cancer who wanted to help my family pay for Maximus's medical bills.  Standing in front of me was a lady that was having the worst day ever because of make-up  


In a way I was kind of happy for the lady.  That this got to be the worst thing that has happened to her.  Lucky her, right?


I am kind of feeling sorry for myself right this second.  We were supposed to go on some really fun trips this summer.  And trips have always been kind of our thing but these days the only trips we seem to take are those to hospital.  Eva and Samuel asked me why I don't take them places anymore (even though we have so many people help us and have made sure they have had a great summer, they still remember when I used to take them everywhere).  Eva told me that she had a dream that she drew a picture and it won a thousand dollars in an art contest and so her and Samuel could join Karl's family on their family reunion trip.  She said it was so much fun to play with her cousins and was sad when she woke up.  I am feeling so sorry for my older kids, too.  They haven't complained a single word and that almost makes me feel worse.  And how about how much I dread having to hurt my baby so bad that he screams, cries, sweats, then finally falls asleep from the pain.  And we have to do those stretches three times a day.  I thought it would get easier but it doesn't.  And he is getting smarter and so the anticipation of the stretches is causing him pain, too.  My kids can hardly look at his hands without cringing.  And how about his donor sight itching so bad that he scratches and scratches with no relief and the skin was broken today where he has been itching the most? And I can't stop thinking about how much more work it is to "be careful" all the time so we don't have one more thing happen.  


I hate that we are managing to have a good time despite the situation.  Because I am lazy and just like to have a good time despite nothing.


Even when I am feeling sorry for myself I don't stop being grateful.  So many people have done so much, have cared so much, and reached out so much.  I am grateful that my story is one that I can share and that I can talk about and publicly process and get help with.  I am grateful that my story is one that, if we just do what we are supposed to,  is practically guaranteed a happy ending.  I am grateful that I understand a little bit more and realize that not every medical story ends that way. 


But, humor me when I say that, every once in while I wish that my worst day ever had to do with something like forgetting make-up.  

baby maximus: thank you from us

Everyday, I am grateful.  And today I can't stop thinking about how grateful I am for all the people that have helped us.  

In so many ways.

I believe in thank you cards.  I love the whole concept.  And it has really really been bugging me that I haven't sent them out.  People really need to be thanked.

I get overwhelmed at how much thanks really needs to be sent out there for all the things that I know about.  Then I get overwhelmed because I know there is so much that people did that I don't even know about.  I know there were adorable things like Tang stands and snow cone stands where Max's little friends raised money to help cover the medical bills.  I know that there were generous thinks like families gave precious money or time, in a time  when both seem to be so scarce.  I know there were courageous things like emptying my fridge or cleaning my toilets :). It's hard to start listing because then I would never be able to stop. And, like I said, there is so much that we don't even know about. People took time out of their days and came to the rescue.  People prayed for us.  People offered.  All these things mean so much to us.


I will admit, I was nervous to accept a lot of help, because  my stupid cynical self thought each action or thing that was given to me automatically gave the person a ticket to judge me. Like what if I ordered pizza, and they didn't waste their money like that and then that would make me a big jerk.  But then I realized that people are a lot kinder than my stupid cynical self.  And that's a good lesson for me to learn.

I know we aren't out of the water yet, but I feel like it's about time I show a little gratitude.  And maybe one day I will get on it and make time to do exactly what I want to do.  But until then, this post will just have to do.

So humor me a minute and pretend this is a card.  A real one.  Excuse, the cheesy caption.  Maximus randomly raised his hands and so Eva and Samuel copied:

So, to you that helped my family so, a personal note...

Several weeks ago, Maximus got hurt.  My family was not equipped to handle this on our own.  In so many ways we were inadequate.  We were so ill-equiped for this type of trauma that we didn't even know how to ask for help, really.  But that is where you came in and helped.  It's almost like Baby Maximus came to this earth straight from God to bring out the good in people. Even without the accident.  But with the burns it has become just so obvious. And since I am his mom, I get to witness that, and that makes me kind of lucky.  We thank you for your example of how to be a kind, giving, supportive, loving, generous person.  If we have ever made deposits into the service bank, we have definitely gone into overdraft at this point and we are inspired to do better.  Thanks to you.  I thank you.  My family thanks you.  No, really.  We are super super grateful.


With love and aloha,
Karl, Christina, Eva, Samuel, and Maximus


And then I take this fake card (with real thanks) and put it in its fake envelope and pretend that I send it off to you.  And I might have to pretend that this will suffice.

baby maximus: experience and gratitude, a post from my parents

This was my family today.  The entire bunch of them. 

My dad asked if he could post to my blog:

I have borrowed this space from Christina, our youngest, to tell you a bit about our experiences these past two or so months and also to express our gratitude for all those who supported Maximus Taisei and his family.

One Saturday evening, April and Dave, our oldest daughter and her husband who live next door, comes over.  I say to them, “they’re coming next week.” Dave says, “no they’re not.” We say to them that Christina had called the day before that they were. So the whole event is explained. We had to have them repeat it several times. Not being able to see Max in person, we didn’t know what to think or imagine. “Will I be able to go on walks with Max as we did just a few months before in Kalaheo?” I thought.

Then we hear from Christina that they will be able to come back and Max be treated at University of Utah Burn Center. I am not a University of Utah fan (I went to Y) but I know he will be in good hands. On the day of their arrival, my wife and I drive to the airport in separate cars so Max, Christina, and Karl can go directly to the hospital. Instead of waiting for them in a parking area, my wife wanted to go in. I was so nervous I could not sit down. I didn’t want to become emotional in front of others. They finally come out. They look terrible. Max looks like he was hit by a freight train.   The plane departure from Hawaii was delayed and Max evidently did not sleep much at all. He had bandages on his face. He was very tired. It wasn’t him, it seemed. I had never experienced a trauma of this caliber myself, my siblings, my four children or our grand children. So it was hard to see him like this. Most of all, he did not act like his old Max.

Chris and Karl had a good system going. Karl stayed with him at the hospital at night because he can sleep anywhere. Chris would go during the day, Karl would home, take a bath, and work.

Max came home after 3 weeks at the U of U hospital. He was looking much better but still not the old him. I think it was due to his medication. Eventually he became old himself. He signs. He even created his own sign for “Granpa”. That’s me! The sign is half way between throwing a kiss and a snappy salute. Max has been very brave and stoic about his condition. One thing I do not like is his rehab of stretching. I do not mind him yelling or screaming when his hands and fingers are being stretched, I am sure the process is painful. But when he is trying to hold back, as we say in Japanese,  ”gaman”, it hurts us much more. I am sure the procedure is not easy on Chris or Karl either.

This happened after one of sessions that take place several time a day.

I am sure this will be a lifelong challenge for Max but at the same time, it will not control his life. Scars don’t look good at all right now, but they will get better we are certain. And after all, we named him MAXIMUS TAISEI.

My wife, Junko, and I would like to thank all those people who have supported them in many many ways. I am sure it wasn’t easy taking care of Max’s siblings for a whole week while Chris and Karl tended to  Max’s needs, or clean their house, take care of Karl’s trees, etc., etc., etc.

Many thanks to all!

Junko and Teruo Urabe

time to celebrate

I predict that about 7 times while posting this, I am going to want to close the lap top and go to sleep.  I just know it. 

In the movies when there is someone sick, they never show toys, or the other kid's dirty pajamas, or candy wrappers, or one random shoe on the floor.  The room where the sick person is recovering is super clean.  The mom is never in her pajamas until 7:30 at night (I finally put clothes on so we could go for a walk), her toe nail polish isn't chipped, her eyebrows don't need serious shaping (please don't look at my toes or eyebrows the next time you see me).  The mom has on make up, and earrings, and she isn't rotating the same three shirts over and over.  Unless the movie is about a crazy family.  This is so not awesome.

I have never been so great at routine and no one has really cared but now we have to do things like make sure to stretch Maximus's hands three times a day.  And making your baby scream and cry and is so not awesome, either.  So sometimes we want to put it off.  But we always know we have to to it.  Otherwise his skin can contract and he will lose movement.  The pressure.  Right now, he is having a hard time bending his right arm so he has to tilt his head to get food in his mouth.

Look!  No bandages!  We have three bins of bandaging supplies and we don't need any of them!  We should have a bandage burning party.  This last doctor appt, there weren't any open wounds so he has moved on to compression gloves for his left and right hands now.  He wears a brace most of the day on the left and when he sleeps, he wears on on the right.   You can kind of see the donor sites on his legs where the shave off the skin to use for his hands.  They are healing so nicely.  Itchy and not for the faint hearted, but healing nicely.

Even with all the chaos, it is starting to feel more and more like a summer vacation instead of just the summer of, well, you know.  

Today was Independence Day and we celebrated so much.  Our family tradition is that Karl and I get bagels for everyone for the parade.  And us getting anything done before 8:30 a.m. is basically a miracle.  But we did it.  The parade was a lot of candy catching, bagel eating, and trying to embarrass my niece and nephew that were in the parade as much as we could.  Karl and my brother yelled my niece's name over and over super loud and stuff like, "Alex!  I know her!"  She said she felt loved.  She is.  When my nephew came by, we had a bunch of candy ready to throw at him.  

 It is always fun to run into old friends.  Especially if I can show them how well Maximus is doing now (despite his parent's chaotic ways).  I think this is the first time he has actually met this little fashionista of a girl in person, even though it was decided long ago that they would marry.  She was so cute and kept giving him candy.  

 These are all the grandkids, except the two that were in the parade that we tried our best to embarrass.  It is so hard to get Samuel to smile for a photo these days.  Is it the age?

And after all this excitement, I came home and slept for 5 hours.  I'm not even exaggerating. When people ask me how I am holding up, I can honestly say that I am fine.  But I do think it takes its toll.  I shut down like a possum and just don't want to think for a while.  Sleep is the only way, I guess.  

When I woke up, the family was in the midst of preparing quite the feast.  I wanted a happy photo of my three kids so bad on this day.  It took a lot of work.  And this was the best I got.  This is the hint of a smile that I got from Samuel.  I think I mentioned something about smiling or he wouldn't be able to do fireworks.  Something like that.

A little Instagram collage to sum up our surf n turf barbecue meal.   

My brother had some lobsters shipped in the for day.  I haven't had much experience with lobster, so this was an event for me.  I love lobster bisque.  Lobster bisque, grilled lobster, steak, corn, and garlic bread.  Not a veggie in sight.  Haha.  We were celebrating.   

One year, my brother accidentally dropped a steak on the ground right after he grilled it.  Bugged, he chucked it and it stuck up in the tree.  This year, he accidentally dropped a piece of meat, and he chucked it, and it stuck up in the tree again.  That, my friends, is how traditions are born.

 It is so fun to watch Maximus and my one year old niece interact.  She runs, he struts.   And that pretty much sums them up.

Maximus enjoying his ride-on toy.

The bigger kids enjoying their ride-on toys.

Not shown:

The dutch oven berry cobbler, the badminton games, the bubble blowing, the fridge moving (my dad took advantage of all the extra hands), the iron port party, and of course (what Samuel has been waiting for for days, hours, and then minutes), the fireworks (which Maximus did not care for at all, he wanted to be inside).  

I'll admit, I didn't realize that the fun part of life would be able to return so soon.   We seem to be doing a lot of celebrating these days.  Maybe because we are glad we aren't sitting in a hospital anymore.  Maybe we realize that in a split second, our lives can change.  Maybe it's because we weaned Maximus off Oxycodone and the spark came back in his eyes and he started eating better.  Maybe because we are mostly good at doing the fun parts of life and haven't really learned how to do the real stuff so well so this whole thing really threw us for a loop.  Yes, maybe the good us is a celebrating us.

P.S.  My prediction was off.  I only had to fight the urge to stop writing three times.