Cincinnati

Well.  The last 2 weeks have been a bit of whirlwind.  Literally and figuratively.  Last Wednesday, Coco and Papa's house was destroyed in the tornados hitting North Alabama.  They are very lucky to have only lost their house.  Some of their neighbors didn't survive and I have never been so glad to hug my parents' necks in my life as I was the day after the storms.

We were scheduled to be in Cincinnati to see the AeroDigestive team on May 2nd.  At first, after the tornados, we were going to cancel the appointments.  And then Papa and Coco's insurance was really awesome and they were taken care of and mom may have guilted me in to making sure her preshus Nate was taken care of.  So, we're here.  Seeing specialists, having procedures, hanging out in the hotel.

Nate.  That kid is just full of surprises.  2 weeks ago, his pulmonologist in Birmingham wanted him to have a sleep study there so she would have a baseline of information to talk with the Cincinnati specialists about.   They started the night with Nate off his vent and he did great.  And kept doing great.  He did so great, he stayed off the vent all night.  And they even tried him capped, which is putting a plastic cap on the trach, rendering it useless, making him breathe completely through his nose and mouth.  And he's been capped for 2 weeks.  This is huge.  He hasn't used the trach to breathe at all for the last 2 weeks!  He's been doing so well with it.  Which means he's been a normal nose breather.  For 2 weeks.

So, when we got up here on Sunday night, he was at a place where the team could jump in and reiterate everything his Birmingham doctors have been saying, which is Nate is ready to get rid of the trach.  Not right now, but he will be able to live a life of quality without the trach in the near future.

The plan:  we let Nate get 2-3 colds, good upper respiratory infections, and get through them while being capped.  This will be harder for me than it will be for him.  I'm a germaphobe, I don't do sick well.  The pulm up here said I need to get a glass cover for the trach that says "Break only in case of emergencies". I laughed but inside I was cringing.  How do I let him get sick with out using the trach?!  

Nate will also need to have his tonsils and adenoids removed before the trach is removed.  So we're looking at next Spring for decannulation (trach removal).  Ben and I are both fine with a slow path.  The worst thing in the world would be to get rid of the trach now because he's doing so well, only to have to retrach him this winter when he gets a cold and can't handle it for whatever reason.  The plan we have is a good plan.  A solid, steady plan.  We like solid and steady.

To recap:  Nate's a rockstar.  We're working towards getting rid of the trach next Spring.  Everyone is happy.

Toser's Birthday Post

Toser, you turned 6(!!??) last week!  Wow.  Where in the world is my big-headed, fat little baby?  Where in the world did this skinny boy come from?  You are full of energy and life.   Last week, I said you were high on self esteem and you were.  Boy oh boy, you were.

You've had an awesome last few weeks.  You were chosen by your teacher to be Student of the Month for your class.  A boy and a girl from each class are chosen and you get the honor of sitting at a special table for lunch.  You love that you were chosen.  Sometimes you get to choose a friend to sit with you at lunch and you think very hard about who you will pick.  The day you went home with your friend, B, you chose him.  I think that act says a lot about how you think and how conscientious you are, even though I don't always recognize that.  

Daddy took you to pick out a new bike.  You LOVED being included.  You picked out an orange one and it's so big compared to your old one.  Embarrassingly big because we waited too long to get you a new one.  You chose to get one without training wheels and you'll get the hang of riding it soon.  I think this is killing me the most about you growing up.  You're about to be old enough to ride around the neighborhood by yourself and I'm not ready for you to.  I still see you as the little baby who would bang on the glass door at the cat.

You love to play with your little brother.  I love to listen to you two play.  You tell him what to say in your games/role play and he follows right along.  He looks up to you so much and he couldn't have a better role model.  You have a good balance of sweet and booger.  I yell at the booger part too much and I don't validate the sweet enough.  You still give me kisses at the end of the day and tell me you'll see me in the morning. 

You are so confident in your self.  One day, I was trying to convince you to unbutton the top button of your polo shirt and you matter-of-factly stated, "I like it this way."  You make no apologies for who you are and it's one of my greatest fears I will somehow smother that in trying to help you fit in the world.  You're a nut and your sense of humor will take you very far in life.  

My little Boser Toser.  I love you so much.  I hope year 6 is as good for you as year 5 was.  Happy Birthday, to my Von Hoobie Doobie!  

Tater's Birthday Post

Hi!  I suck.  Tater's birthday was March 31st.  He turned 4.  We had fanfare and celebrations at home but I forgot to blog!  oops.  :/

Happy Birthday Tater!  You're 4.  You love being older.  Last week at therapy, you kept holding up 4 fingers to anyone who looked at you.  You got big-boy toys and a LEGO sticker book you've almost finished on your own.  You cannot stand that I still call you my baby.  Sorry, you'll always be my baby.  When you're 25, you'll be my baby.  That's just how it is.

You are obsessed with Dinosaur Train and your Daddy.  I feel victorious on the nights you ask me to put you to bed because you obviously prefer Daddy to me.  You get so excited when he gets home from work and will snuggle all day long with him.  You still think Toser hung the moon and stars and even though you fight like the brothers you are, you play so well together.  You follow him around and do most anything he tells you to do.  Until you don't and then good luck to the person trying to convince you to do something after that.  You are a stubborn booger when you don't want to do something.  And your leg often hurts when it's time to pick up toys or clean the table.  Pitiful Medical Baby is in full force when you need it.  When you're really down or sick, you want to call Coco because she gives the best pity love over the phone.

Recently, you were really sick for 2 weeks.  Like take years off my life sick.  I had to take you to the ER twice during those 2 weeks and you were such a trooper.  You don't like being at the hospital, but you deal.  And you never punish me for having to take you.  You're old enough to know these people are trying to help you and that you will feel better after taking medicine.  You hate breathing treatments.  The nebulizer has turned into ALL THAT IS EVIL.  I don't know why.  I think because you have to be tied down for 15 minutes?

One Saturday when you were sick, you had to be on your vent.  I set you up on the couch and eventually, there were no more kid shows on the TV.  You watched college basketball all day long.  Daddy was out of town and when I told him you watched at least 5 games, I swear I heard a tear drop.  He is very proud you got his love of all things sport.  If there are a group or men or women competing over some inanimate object, you and he will drop everything to watch.  You will always have this bond with your Daddy and it will take you through many rough times.

You love your nurse, Pat.  She is your grandmother/servant/play pal.  I often find the 2 of you snuggled in a chair.  She eats it up and she loves you just as much as you love her.  You're nutty together.  Actually, you're just a nut in general.  Your teacher gave you a birthday hat at school and you wore it to the restaurant we went to that night.  You didn't notice the attention you got wearing it because you just take that attention for granted.  You're one of the funniest guys I know.

You are full of love.  You MUST give whoever is leaving a hug and a kiss and stand at the door for 'one honk, one wave'.  You get very upset if you miss 'one honk, one wave'.  You give the best squeeze hugs and have the most kissable cheeks.  They're so soft and wonderful and I love to snuggle with you and kiss you until you get mad.  I love it.

And I love you.  You are an awesome 4 year-old who is still teaching me so much about patience and strength.  You are sitting here in your PJs, watching Caillou, one of the most annoying shows ever put on children's television, and you are so happy.  I learn so much about the little things just by being your Mommy.  You are one of the 3 best things ever to happen to me.  Happy Happy Birthday.