Friday, September 28, 2012

Hello, 9th Floor

We're baaaaaaaaack.

And contrary to what you might think, we're really glad to be here-- the 9th Floor, that is.

To be clear, we are not glad that MC had increased seizures prompting his exit from the rehab hospital; rather, we are glad that he has a team of 19 doctors-- I'm not kidding, I counted during rounds this morning-- working to sort him out.

I'm going to be honest. The timing seems a bit suspicious. Princess hosted a Sip and See this weekend to celebrate their homecoming
Yai Yai, Princess, Mommy & Nana
went to visit MC afterwards to tell him all about the bash

and after 3 days of improvement, he suddenly starts regressing. Perhaps we should be adding attentionitis to his ever growing list of diagnoses?

Anyways, with a little advocating on Mommy's part (I may have quit my job, but rest assured, I retained my J.D.), we managed to get MC transferred from rehab back to the hospital.

MC decided that after 8 rides in 3 different countries, he's most definitely qualified to ride alone.  I agreed.

Nevertheless, whether I'm riding up front, by his side, or trailing behind, knowing my little baby is inside that big scary truck with all those flashing lights and sirens-- it gets me every time.

To stop the inevitable tears, I recall my Funny Indian Ambulance Story. When the Canadian med-evac team arrived at the hospital in India to take us to the airport, the team had been in India for less than 12 hours. One of the team members suggested that since we had plenty of time to get to the airport, we leave the lights and sirens off, you know, to prevent cars from unnecessarily scrambling to get out of our way.

Needless to say, the driver and I had a good laugh. For those of those of you who have not been to India, lights (or dippers) and horns, are used by everyone, at all times, at a rate that puts New York City to shame.

To prove my point, I present to you a video of my Child of India's reaction when the fire alarm went off this morning. (Not to worry, just too much steam from the shower.)

Anyways, MC has been at the hospital 3 days now, and he is currently undergoing his 1st 24 hour video EEG/4th EEG ever. I've been calling him Neuro Smurf for the day.

His nurse said that the name is totally appropriate, so long as he doesn't take it as a cue to turn blue. I know, I know, you're probably gasping in horror at our tasteless hospital humor. But the reality is that it's an ever growing nightmare and sometimes it's best just to laugh... when all you want to do is cry.

With love from Baltimore,

Mommy, Princess and our very own Super Hero, MC

Thursday, September 20, 2012

The Sweetest Thing Ever

Today was a GREAT day. 

It was Princess' third time visiting MC at the rehab hospital.

Every time she visits, Princess immediately notices MC and reaches out to hold his hand. 

So what made today such a GREAT day?

Today, he noticed her, too.

Friday, September 14, 2012

Headed Somewhere Special

When we first arrived in the states and realized that MC could be facing serious long term health problems, a lot of readers forwarded me this poem.

And I loved it.

"Lucky" for me, however, we had endured such a long battle with infertility, that  I had barely even started making plans for Italy. 

Remember this post?

I was finally ready to start making plans for Italy and 3 days later the babies were born!

3 days later!!! 

Although I like to consider myself an expert trip planner,  I don't know of anyone who's capable of packing for a foreign country, coordinating sight-seeing plans and learning a new language in a mere 3 days.

I certainly wasn't. I threw a bunch of stuff in a suitcase, bought a one way ticket to somewhere, and hopped on a plane.

The poem was right, though. When I arrived, everywhere around me, people were coming and going from Italy. Even though they were all couples like us, who had been on their fair share of rerouted planes, they had all somehow managed to finally land in Italy.

And then there was me. Despite being constantly told that I had landed in Italy, I knew that no, this was most definitely not Italy. 

Looking back, I realize now that as early as Day 1 in Delhi, I was already flipping to the section of my untouched guidebook-- What to Do if You Happen to Land in Holland. 

Nevertheless, as a matter of survival, I convinced both myself and Duane, for 4 1/2 long months, that, yes, indeed, we had finally landed in Italy.

Our decision to transfer MC to the second hospital in Delhi was a reality check. The doctors were frank. Mommy, they said, contrary to what you may have believed, you are most definitely not in Italy. 

Oh. Well no problem, I guess. It was a bit to digest, but Duane and I talked, and particularly since we had never really prepared for Italy in the first place, we agreed that we'd probably make the best darn Dutch tourists on Earth.

The other day, as I sat in that awful meeting, it hit me.

Dear god, we might not even get to go to Holland.  

That, I, unfortunately, could not digest. We had invested everything we had in this trip. Not only were we going to be the parents that would survive Holland, we were going to be the ones that would embrace it! 

Please, oh please, just let us at least go to Holland.

Since arriving at the rehab hospital, we see families constantly coming and going from Holland. And it's a familiar feeling. Because I think that both Duane and I know that we have not even landed in Holland.

For the past week, I mourned this realization. And I still am.

However, I am slowly coming to understand that there is release in knowing that MC has a very rare syndrome. 

That there is release in knowing that we have not landed in Holland.

That there is release in knowing that we now have the potential to land anywhere... 

... somewhere, perhaps, even better than Holland.

Outfit courtesy of a very special friend. 

Thursday, September 13, 2012

One Step Closer to HOME

Delhi New Born Centre, Pitampura, India (7460 miles)
Max Super Specialty Hospital, New Delhi, India (7451 miles)
Somewhere in Vienna, Austria (1165 miles)
Johns Hopkins Hospital, Baltimore City, Maryland (11 miles)
In Patient Rehab Hospital (9.3 miles)

Friday, September 7, 2012

Conversations of a Lost Couple

I just wanted him to be able to high-five. And smile. That's all I wanted.

And now his hearing?!? I mean, seriously, on top of all of this, he's not even going to get to hear?!?

He's my son. My SON!!! 

I just want him to get to be an adult.

Why did they give him to us if they're just going to take him away?

It's not your fault. It's not our fault.

It's just cruel. After all we went through to have our family. Just so goddamn unbelievably cruel.

We had another meeting yesterday.

Hayden has been diagnosed with Infantile Spasms with a likelihood of Ohtahara Syndrome.

I know today will be a better day. Because yesterday was the worst day  of my life.

Sunday, September 2, 2012

Our First Family Photo

Thanks to Princess contracting MC's silly old respiratory flu, we were finally able to spend time together, in the same room, as one big contagious Family of Four!!!

Which means that after 5 1/2 months, we were finally able to capture our very first family photo...

Saturday, September 1, 2012

It's Just a Name For What I Already Knew

Princess' pediatrician called yesterday.

For the past two weeks, Princess has had a cough, a runny nose and on occasion, been waking in the middle of the night. She was also up at the hospital and around MC before we knew that he had contracted the respiratory flu.

Princess' pediatrician told me she has Type III ParaInfluenza.

It didn't change anything. I wasn't anymore worried after our conversation than I was before. There was nothing I could do any different to help her.

Type III ParaInfluenza. 

It's just a name for what I already knew.

MC's neurologist stopped by yesterday.

Since birth, MC has had spastic, jerky movements. In India, I continually inquired about whether the doctors felt he had a neurological condition, and point blank asked if they thought he was seizing. Often, his arms flap, his eyes move different directions, and he engages in a repetitive sucking motion... despite the fact that he doesn't know how to suck.  He stares off into space, his limbs become stiff and he sometimes appears to be riding a bike.

Yesterday, after a particularly scary episode, MC's neurologist added Keppra, a second anti-convulsion medicine, to his regime. She mentioned, however, that given the frequency of his seizures, it's likely that medicine may not be able to fully control his Epilepsy.


If it's just a name for what I already knew, then why did it sound so scary?