Cows can have trachs, too

Today while we were playing with the cow popper, Nate got a look of revelation on his face and exclaimed, "Trach! Trach-tie!!!"

Fork

Tonight I was looking for a way to kill that painful hour that comes everyday between dinnertime and bedtime and had a stroke of brilliance. 

A fort! Nate was totally into it.

Here is Nate insisting that it is actually called a "fork" and totally dismissing the hard work I put in to throwing a sheet over three chairs. 

Of course George was invited to join us.

Bedtime came quicker than usual tonight.  The fort will be making a reappearance again very soon.

Smarty Smardy

Nate is a pretty smart kid but he doesn't get much credit for it.  Maybe people just can't see past the all the tubes and crazy hair, I don't know.  But it's high time we did something about it.

Does that help?

Scott has a really terrible eye infection and can't wear his contacts for the next few weeks.  Nate thinks this is awesome since his glasses have now made an appearance and he's allowed to wear them for a few minutes a day.  We put them on and he pretends to be daddy.  We all get a pretty big kick out of it.

Number One

Nate is #1 and everyone should know it.  So we branded his leg.  Doesn't it look awesome?

Okay, maybe he was just sitting on a magnet for too long, but he picked the right number.

Incidentally Nate is really into numbers right now.  He loves to count and point out numbers when he sees them.  The other day when pulled up to my parents' house he saw their address and said "567!" (Yes that really is their address, please don't stalk them now).  Funny boy.

Days Without Incident

When Nate first came home from the hospital last August, he wasn't in great shape.  His oxygen would drop dangerously low on a regular basis and it was up to me and Scott to revive our blue little boy.  A few times we had to call the paramedics and ended up back in the hospital, but most of the time we were able to stabilize him at home by suctioning, changing his trach, and/or using a manual resuscitation bag.  Those days were filled with constant anxiety.  We considered it a feat to make it even a few days with an incident. 

That's when we started a "Days Without Incident" counter on our chalkboard.  We considered an "incident" anytime he had a significant loss of oxygen and had to be resuscitated.  There was a lot of going back to "0" on that counter.  Gradually these incidents got less and less frequent and we stopped counting altogether.  I think it's been well over 300 days now.

Nate is so much healthier now, and we are so much better at taking care of him so it's easier to prevent scary situations.  These days we consider it to be an incident when he poops all over his sheets or his feeding tube comes disconnected and he's sitting in a pool of his own stomach contents all over the carpet (thank goodness we're renters).  The "Days Without Incident" counter still gets updated from time to time though.  I like to remind myself how far we've come. 

Classic Nate

Sometimes we forget that before there was Nate, there was baby Nate.  

Once upon a time Nate was a Cheerio addict.  We often found him in a room in nothing but his diaper, crumbs all over him and an empty box of Cheerios by his side.  In fact, he may not even have SMARD, this could just be Cheerio withdrawal. 

Swimming

Nate is a pretty happy and easygoing kid but he is not one to leap into anything unfamiliar.  I think he's earned the right to be cautious after all he's been through in his life, but I still insist that he gives new things a shot.  I've learned that if you give him an equal amount of patience and pushing, he'll come around eventually.

Swimming was not an instant hit this year.  I think we took him at least three times before he stopped throwing tantrums at the mention of the word "pool".  We started by just sunbathing beside the pool.  Then we dipped our feet in the water while Nate shouted orders to Daddy to swim like a hippo, giraffe, or a starfish (very little difference in technique, if you're wondering). 

Eventually Nate was comfortable enough (and the weather was hot enough) for him to want to get in the water.  Now swimming is his favorite thing to do and he'd go everyday if we could. 

By the way, I realized right after this that he was saying he saw a "three", not a tree.  He was pointing out the number 3 on the depth marker in the pool!  Isn't he clever?!

Some people have asked me how he can go swimming with the trach.  Basically we just have to be careful that the upper part of his tube and his neck stay dry.  Lately we've been taking more risks in exchange for better quality of life, and so far I think it's worth it.  But if you happen to run into his pulmonologist, none of this ever happened.