On with the Show

I've been waiting. Waiting. Wanting. Wishing. Hoping. Waiting to make my next post because I was just sure the next entry should be about McKay's first words. I guess I should of remembered what my grandfather taught me about wishing. "Wish in one hand and spit in the other--see which one gets full first."
McKay's ear tubes and echo went so well that we packed up that very night and drove down to Southern Utah for the weekend. I love running the annual half marathon every January and McKay seemed as right as rain so we hit the road.

We made the trip with friends and it was a busy, but fun weekend of doing something--ANYTHING--different. It felt good to get away.

All the stress of the week paid off as I ran and ran and ran my way to my best half marathon time yet--a 1:45! They even had photographers out on the trail this year to capture the journey for me. They obviously used a high speed camera to capture such a crisp image of my wind-like motion :).

The kids had a great time exploring the red rocks with their friends. And Ty celebrated his second of what seemed a never-ending month of "I'm 7 Now!" cake and ice cream events. Whatever. Birthdays are magical--the only day (or month) of the year that's YOURS. I love to do them up right for my boys. And Ty is just about as great as they come. I feel like everyday he's becoming a new person. One I have to chat with and interview and ask hard and bendy questions to make sure I understand where he's coming from. In many ways I feel like I'm meeting him for the first time. And you know what's even better? I like who he is. He makes me proud. He is smart and funny and kind. His heart is solid gold. In fact, we may need to switch faiths in order to join a religion with a paid clergy. He's just that good, through and through.

Then we came home and I waited. I waited for the miracle that was supposed to be tubes. "Oh! Your life will be completely changed," people told me. He'll sleep through the night. He'll eat better. He's react and move and light up to sounds like he's never done before. So I waited. And I watched. And I loved on him. But the only thing that's changed with my dear and darling Mac-aroni is this:

Despite our very best efforts to isolate and protect and provide all the best preventative medications, McKay somehow, somewhere, can't-think-about-where-it-came-from-or-it-will- drive-me-right-to-the-edge has contracted RSV.

He's home. We're watching him. Giving him steam sessions and syringing every drop of mucus we can get close to. And we're waiting. Waiting. Wanting. Wishing. Hoping. Hoping that somehow his just-last-Tuesday dose of Synagis will ease the symptoms and prevent the virus from multiplying as it normally would. We're beyond hoping for words this week. We just want him to breathe. So far, so good.

Tonight it's on with the show at our house. And in our version of normal, we're shrugging our shoulders and counting our blessings. All in all things are good. I have spent today weepy with a sense of gratitude for the gift of perspective Christ continually gives to me. Just when I seem overwhelmed with worry or want for something I cannot control, God consistently steps in, let's me know He is there, and redirects my path to more productive pursuits. I have talents to give. I have love to offer. I have pain to feel. But mostly my life is joy. And I have His tender mercies to see me through it all. No more waiting. No more wishing. Because He will make sure today has everything I need.

In and Out

Today went well. Mac was incredibly cranky this morning after resting little and eating less than normal. By the time the nurses got to their poking and prodding he was not to be messed with. That said, he made it through both procedures with flying colors. We were home just four hours after we checked in.

Mac is a champ. More to come when we have the time.

Thank you so much for all your care and concern. This was a minor hurdle, but we're glad to have cleared it.

Twofer

Tomorrow's the day. Ear tubes and an echo. It's a veritable twofer.

We ask for your best thoughts, a little room in your prayers, and for McKay to unveil his first words on Friday.

I realize that last one might be a little too much to ask. But I have a feeling he's been saving up.

He's such a tease.

The Pudgy Arm of the Law

Mac is officially a walker now.

But he doesn’t walk. He swaggers. Like some wild west sheriff taking stock of his town.

His arms hang straight down to the side, a slow side-to-side momentum in the hips, legs spread far enough apart to slow the ache from being saddle sore.

His tipsy ways make you wonder if he’s just come from the saloon or if he’s reeling from an outlaw’s fist to the chin.

I’d ride off into the sunset with this kid any day of the week.

Now Hear This

This was going to be a smug entry about how prepared I was to meet our newest doctor today. How I ordered McKay’s complete medical history. How I tabbed out all the relevant visits. How I documented the timeline his last six months of near continual antibiotics and how this entire ear fiasco has now reached its crescendo in an inexcusably late visit to him, a specialist. In short, I was obnoxiously over prepared for our visit with the ENT today.

Instead of inspecting the oh-so-impressive paperwork I had prepared, we chatted. He scribbled notes and I rattled off procedure dates and recounted courses of medications. We talked about events to come this year and how important it was that Mac had the option of antibiotics that work when he needs them and a body that has not been so overexposed it refuses to cooperate. Then he took a good long look into Mac's tiny ears.

And the verdict is…

Tubes. After taking McKay’s history, our new specialist agreed we needed to check this little complication off our big guy’s list. Then he impressed me. Most docs, it seems, don't like to share. Procedures. Operating rooms. Focus. But he asked if I had any objections to doubling up on procedures when they sedate McKay for an echocardiogram in the next month or two. Absolutely not. The less anesthesia episodes the better. It was a move that showed his humility and respect for Mac’s heart...and mine. Love that.

More details~Because of the fluid that is constantly behind McKay’s eardrum, the doctor estimates he is experiencing a 30 decibel or 20-30 percent hearing loss that could be immediately reversed with tubes. We talked about his speech delay and other developmental milestones that have come and gone. "He'll catch up," he said. "Don't worry."

Beyond eliminating the physical pain of constant ear infections for McKay, on a selfish note, I just want to hear his voice. I’ve waited entirely too long and worried entirely too much about this little man not to have earned a word or two. I think hearing him spurt out “mama” will make an absolute mess of me.

So here’s to plans of action. To trusting. To hoping. To hearing. And, of course, to “mama.”

________

Update: I just spoke with the hospital. Cardiology and Otolaryngology have agreed to coordinate McKay’s next sedated echo and his ear tube surgery next Thursday, Jan. 21. Less talk. More action. Gotta love that.

My Little Yogi

I started doing yoga about a year ago. After days of letting the pavement pound my joints, it seemed like a good idea to treat them to a good stretch for at least an hour a week. Although I've really come to love my yoga class, I'm only able to squeeze it in once or twice a week and I am still very much a beginner.

Yoga as exercise (especially to a runner), can be deceiving. This slow-moving, intense movement is not as easy as it looks. As the instructor leads you through a series of poses you are asked to balance, lift, and shift your own body weight, stretch muscles heretofore undiscovered, and redirect blood flow from your legs, head, and arms. I have left one hour of yoga more sore than I've ever been from some of my longest runs. But it's a good, deep, man-I-worked-something-important-today sore. And at the end of each session I feel a serene sense of calm, center, release.

Of course yoga is an ancient practice that has survived through centuries of diets, infomercial gadgets and miracle pills. And if I had any doubt it was built on a study of the body's natural movements and needs, my little yogi has put that doubt to rest.

Over the last few months, McKay has taken to one particular yoga pose: The Downward Facing Dog. I've done my best to capture his yoga prowess in pictures, but he is so unpredictable with it that by the time I grab the camera, he's through. The best I can do for you is this shot from last summer with his physical therapist. He now gets into this position all on his own and we've seen him hold it for up to a minute.

I mentioned his like of this position to his pediatrician at his Synagis appointment on Tuesday--by the way, it's been two weeks since the Rocephin shots and there's no sign of another ear infection!!-- and he grew intensely interested. After a discussion of when and why he might be throwing himself into the downward dog several times a day, he mentioned something to me about "Tet movements."

According to Mac's doc, Tet movements were dubbed so when doctors observed kids with a congenital heart condition called Tetrology of Fallot getting into body positions that promoted increased blood flow or decreased pulmonary pressures. It can be a headstand, a deep squat, anything that opens up arteries and increases blood flow. Interesting, no?

He theorizes that McKay can sense when he needs increased blood flow to the brain or decreased pressure in his pulmonary arteries and so assumes the downward dog position until he feels better. Mac's pressures have always checked out great through echos and a heart cath, so I'm not overly concerned with the new practice. Of course I will discuss all this with McKay's cardiologist, but for now I am absolutely fascinated by the idea and wonder if anyone else has experienced this with their kids.

The additional bonus to Mac's little workout routine is a decidedly stronger upper body and the ability for him to transition from the floor to standing without any assistance. It seems daily yoga is making McKay stronger.

I just thought I'd chronicle this little oddity and ask if other heart families have observed similar behavior in your little ones. Because, hey, if there's enough of us, perhaps we could start a studio. How posh would that be? :) Namaste.

What's Out, What's In for 2010

Out with a neurotic need to control the details;
in with the mojo required to let good things happen.

Out with crowds of others to please;
in with soul mates who take me as I am
and remind me who I can be.

Out with treadmills to nowhere;
in with runs that respect the journey.

Out with pandemic illness and worried nights;
in with health in mind, body, and spirit.

Out with fighting what is;
in with welcoming all that can be.

Out with lectures;
in with example.

Out with frustration;
in with laughter.

Out with chaos, unrest, noise;
in with the peace of three busy boys.

Welcome 2010.

You will be a decade of changes. And victories. And joy.
Deep-down, cannot-put-words-to-it, beyond-the-smiles-on-our-faces JOY.

We will look for it everywhere. We will find it in everything.

Because you usually get what you expect.
In life. In people. In every day.

Here's to a truly Happy New Year.