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.  

baby maximus: adjusting

In just 5 days...

We came home from the hospital.  

This is what Karl's first night sleeping in a bed for a whole month looked like.  We were afraid to stick Maximus in his crib and make him cry it out after such a traumatic month so we held him until he fell asleep.  And then he tossed and turned all night.  So we did, too.  And Samuel decided to join us.  If you have had a newborn, you know how my head was feeling.  This looks semi-peaceful but it wasn't.  There were four in the bed and the little one said...

It only took one night of that to realize that the sardine can/bed situation wasn't working.  The next night it was crib time.  There were a few tears.  But guess what?  He slept like a champ.  So much so that I started to worry.  After an hour of worrying and occasionally standing outside his door wondering if he was okay I tiptoed into his room.  He was hugging his blanket.  He said, "Hi!" I think it would be hilarious to watch my mom tiptoe into the room all the way to the crib, stare at me for a minute and then see the look on her face when I say, "Hi!"  Maximus is hilarious.  He was fine, then I had to leave the room and make him cry.  I am awesome. 

He hasn't forgotten how to sleep at night and that deserves a great big thank goodness.  It makes life  a jillion time easier. 

 

Maximus has gotten his appetite back.  

Chopsticks!  He insisted.  

I was actually happy to share my hospital mint brownie when he asked.  He finally asks for food.  Such a relief.

We went back to the hospital three times.  

It's routine.  Wound care and therapy.  Our new life.  

The bandages are getting less and less.  His right thigh is bandage free.  It looks like it really wants to be bandaged but they assured me it doesn't.  That means it the skin has healed.  
Our new life in addition to our old life.  

We have changed miles of bandages and done hours of therapy stretches.

At home we are supposed to change his dressings and stretch his hands three times a day.  

We have sorted through all the stuff we have here in UT.  

Our friends let us put some stuff in their shipping container headed to Kauai.  And I just can't even explain what a huge relief it was to not have to do all the work that it takes to arrange that.  It is a decision making nightmare times 10 and add the money stress and we'll times that by 100.  I started the process a couple of times and quit.  Too much work.  And the work I was avoiding sat and waited and bugged me constantly.  So thankful.  Times 1000.

We pulled two all nighters to get that done.  And we aren't college spring chickens anymore. Aging rapidly.  Times 10,000.  
We have a crazy life that we chose.
Plus this new crazy life that we didn't choose.

Another eating photo.

Can you tell I am excited?  

He went from only eating two goldfishie crackers the whole day to eating two in one bite.  

We are coping.  Even having fun sometimes.  How?

Looking through my photos, it looks like sugar is helping me get through this.  

No, my hand isn't unusually small.  That shake is gigantic.  Karl and I may not agree on a lot of things.  But we agree on Iceberg :).

Karl got some iron port syrup for father's day and we have been making them italian soda style with Sonic's ice nuggets.  Two chubby thumbs up.  

Burn life is in addition to our other life, too.

Eva and my sweet niece in their yukatas that my aunt sent them.  

I kept waiting for a pause.  I don't think we'll have pauses for a while.  I found the old baby monitor and set it up so I don't do stupid things like walk into Max's room and have him greet me and then have to walk out again and upset him.  Tonight, there is just me in my bed.  Big contrast to the first night home.  Ahhh, the space.  Karl must have fallen asleep while putting Maximus down.  I wouldn't be surprised if he just collapsed face down on the floor.  I can hear hear him snoring in the baby monitor.  The snoring means he is exhausted (he tells me he only snores when he is really tired, then I joke that I only sleep when I am really tired.  Funny me, I know).  Not sleeping for three days will do that to you.  Karl is in there, so I know Maximus is fine.  So, I'll turn off the baby monitor.  Just as soon as I'm done giggling.
5 days home.  He's 5 days closer to getting all better. 

I'll admit, I don't know if we have ever had a normal day.  But I guess that is our normal.  

We've got some major adjusting skills.

baby maximus: home!

We are home, at my parent's house now. Made the trip safe and sound. They gave him a stuffed dragon. Said it was because when you fight a dragon, it gets smaller and smaller. Like this. And I say that after this, fighting dragons would be a piece of cake for Maximus.

In the few hours we have been here we have eaten lunch (and my mom and dad trying to slurp their noodles extra loud and make them sound extra delicious was about the cutest thing ever. And it totally worked), gone outside to look at the fish, played trains, and niece is now playing ball with his cute cousin. He is loving it.

Now, I need to remember which meds come when. And now much. And how to do it so he doesn't spit it all out. Yikes. And how to change his dressings. And what to do when his diaper leaks onto his bandages. And to remember to take him in tomorrow. And two days after that. And all the other things that nurses did. Nurses are awesome.

Welcome home, Baby Maximus!

baby maximus: he owns me

I was thinking about my blog title.  Because sometimes you choose things that are so funny and relevant at the time but then as time goes by it's not so relevant and therefore not so funny.  But this story keeps cracking me up... Samuel climbs in our bed one morning.  Cuddles up to me.  Karl tries to put his arm around me, too.  Samuel, annoyed, says, "Get your own mom."  

Own mom.  

He owns me.  

All my kids own me.  

I shouldn't be saying I have three kids when I describe myself.  

I should be saying three kids own me.  

At least that's the way I have been feeling.  It's okay.  I signed up for this.  

 It's fun to feed people that love to eat, right?  Max loves to eat.  And he just has this look that makes you want to feed him. Maybe that's one of the characteristics of a therapy baby is that they are fun to feed.  But lately he hasn't been eating much.  It's sad.  

It doesn't stop most from trying.  The guy a few rooms down from us (that is out already, *sigh*) saw us walking past a few times and asked the nurse if it was okay if he gave Maximus a Kit Kat.  Look at Maximus try to hold it.  So funny.  

And my sister's family discovered that Maximus thinks dum-dums are awesome. 

And gold fishy crackers showed up in the mail all the way from Kauai from his sweet aunty Kat that always feeds him gold fishy crackers at the beach or at church.  

Or how about that two pound box of chocolate from his grandma and grandpa.  I was even letting him take one bite out of one and then go for another.  I usually hate that.  

Or letting Samuel feed him grape juice out of a can?  Sounds messy, right?  It was.  LIttle grape juice specks everywhere.  

But I let all these things happen because I want him to eat. 

Oh, and because he really really owns me right now.

You know what says when he wants something?

He says, "Mom!"  It doesn't necessarily mean me.  It seriously means that he wants something and he wants it now.

Physical therapists come in everyday.  They play a little, they move his hands a little, they show us how to move his hands.  So he is trying to get Maximus to push a button on a toy.  Maximus pulls out his foot and pushes the button.  The physical therapist laughs, "I haven't seen that before."  

and he didn't even see Maximus eat with his feet.  The thing is, he can pick things up with his right hand but he still thinks it's fun to pick it up with his hand, stick it in his toes and then eat it.  

And I let him.  Because he owns me right now.  And it's pretty funny.  

I posted this on FB, but here's is a 10 second video of it.  

Today they changed the dressings on his left hand from a giant club/paw and slimmed it down to more of a small paddle.  A momentous occasion, after three and half weeks of not being able to hold up his own cup, he can now hydrate himself.  

No more teddy bear muffin paws for this boy.  He is down to a temporary compression glove and sleeve on his right and a paddle on his left.  Both his thighs are wrapped but he is IV free.  It left a yucky mark on his foot, but it is gone.   As it heals, his right thigh itches real bad.  He keep scratching.  And being bugged by it.  Poor guy. 

When we get antsy from sitting in the hospital room, we go for walks to the other connecting hospitals.  Primary's has these fake fish that Maximus stared at for a long time.  When we first got to the hospital he wouldn't sit in it.  I had to sit in there with him.

You know, because he owns me.  

But now he is used to it, loves going for rides, and whimpers when he realizes we are back at the burn unit.  

Maximus is surviving the hospital with yummy treats, TV, books, singing, toys, wagon rides and making me his personal slave.

I am surviving with awesome electronics (I love technology), knowing this will end soon (like,  the doctor told us Maximus can leave this Friday), and figuring out which cafeteria has the best mint brownies.   

So, ya, it looks like we are leaving Friday.  I am nervous to keep Maximus safe in a different environment but other than that, this is very good news.

And, when we are all under the same roof, my kids can own me all at once instead of shifts.  

baby karl

 Happy Fathers Day!

Looks like Maximus isn't the only one that can sport a little Euro swimmie.  

Now the mystery of where Maximus gets his lighter hair and sturdy physique is not much of a mystery, is it?

Karl, being so father-y...

Maximus update:

Yesterday, his surgery went as planned.  They took a strip off skin of his left thigh all the way up his hip and grafted it onto his left hand.  During recovery was first time that I felt this scared about this situation.  His oxygen levels kept dropping.  100 is best and anything under 90 the alarm would sound and his kept going down to the 70's even the 60's and then specialists would come in and hook stuff up and give him stuff (I'm so technical, I know).  I found myself trying to breath deep hoping Maximus would catch on.  I had to hold the oxygen mask as close to his face as I could without touching him.  The second it would touch him he would freak out and we could have to start over getting his levels up.  It was like playing Operation but instead of a buzz, a kid would get mad, roll over and bat at the mask with his bandage paws.  It was nerve racking and it took three hours.  Taking deep breaths just thinking about it.  But after that he slept like a giant baby.  They will keep him sedated so he doesn't disturb his grafts.

 It is hard to look at his splotchy, stapled, sewn, wrapped, bumpy hand and understand why they are saying how great and even beautiful it looks. I will take their word for it.  

I miss being able to squeeze his thighs.  It was an instant laugh from him.  His ticklish spot.  And, today, when they were unwrapping his right hand, Eva's eyes got all watery and she said, "I miss his hands!  My eye's keep watering.  I just miss his hands."  She was crying.  She's right, his hands are very missable.  And his thighs.  

They unclubbed his right hand and put it in a compression sleeve and glove today.  It looks so tiny now.  And seems so fragile without the splint and layers and layers of gauze and bandages.

It looks like he is healing quickly.  

Seems to me, this has been Karl's father-iest year so far.

Good thing there is a day to celebrate it.

baby maximus: i'm sorry

I am sorry that Maximus hurts. 

I am sorry that sometimes when he is hurting all I can do is rub his back or his hair or any other skin that I can find that isn't bandaged up.

I am sorry that sometimes he hurts so bad that he wants his face buried in my neck and when I move an inch, he gets scared.  It's like he is trying to crawl in and hide from the hurts in that spot.  Sometimes he tries to hold me with his nubby muffin clubs to make sure that I can't get away.  

I am also so sorry for the people that are sorry right along with me.  Maximus is not just mine and Karl's baby.  I know that.  I know that there are so many people feeling pain, too.

His besties are the guys with the big giant teddy bear hearts.  Maximus with his teeny tiny vocabulary, seems to be able to carry on some sort of conversation.  Words not necessary.  I heard that one of Maximus's favorite friends at church spoke of when he first met Maximus.  My friend wrote,  "He said that Max wanted to eat some food with him, came down and sat next to him and they ate together.  Michael's words were, 

'we became good friends after that.' 

He talked about how much he missed him and how much he wishes him a speedy recovery."

Just thinking about this gets us choked up every time.   Can't you just picture Maximus sitting next to this local, gentle giant, hanging out and having a snack?  Such a great image.  

I have so many memories of Maximus making friends like that. 

And I know that those friends are hurting, too, and I'm sorry.    

Two and a half weeks half passed by.  The shock of the story has worn off.  But it still is a pretty yucky thing to hear. I am sorry that we have this horrific story and that people we love have to hear it.   My heart sinks every time I see a new baby in the burn unit.  I'm starting to feel like a permanent fixture here.  Feels like we see kids come in and out but we keep staying.  He has another surgery scheduled for Friday.  They will take the skin from his left thigh and graft his left hand.  

The nurse snapped this picture...

It's okay to be this sorry. I know I won't always have to be this sorry. 

 We dumped some sad into the universe.  

I'm sorry.