Breakdown

Over the last few months I think I have suffered a bit of a “breakdown” not at all in a negative sense but rather in the sense that after the last year we have had I just needed to take a break. A break from the constant stress and worry about the things we just couldn’t control but we thank God turned out so well. A break from blogging about, thinking about, or even talking about one medical crisis or another, I decided to pack it all away for a bit and breathe.

Last year brought so much, both good and bad. It had been many years since we had three surgeries in a six month period. In so many ways it felt like we had gone back to square one, an eerie place we had been before but had hoped to never revisit. It seemed we were reliving Max’s first year of life when multiple surgeries, following in quick succession, were our “norm”. Long hospital stays, ICUs, ventilators, etc. were part of our distant past but yet we found ourselves in the midst of the chaos again. We were sorely out of practice but as they say it’s like riding a bicycle you never really forget no matter how hard you try. We quickly found our groove and went back on auto-pilot.

Without doubt the worst part of the last year was watching Max go through all he went through. Missing out on school vacations, summer breaks, lying in a bed with tubes coming out of every imaginable place and seeing the suffering in his eyes. Throughout it all he complained very little but we have seen so many changes in Max recently we can’t help but wonder what scars he has from his most recent battles. Surely some of it is just the result of a little boy growing up but much of it must be attributed to the pain, both physical and emotional, he went through this last year. I have spent a lot of my newly found “free time” just trying to be a normal mom (still not sure what that is and if it even exists) in a normal mother/son relationship trying to help Max bounce back. I’m happy to report that underneath it all Max is still his same old goofy self!

In the midst of all of this, as things started to calm down and Max’s health “report card” seemed to be getting straight A’s I think my mind just went into hibernation and I needed to take a break from being the mom of a chronically ill child. Obviously I am STILL the mom of a very special little boy who is in fact chronically, seriously ill but we’ve been in a “lull” and I’m milking it for everything it’s got. I’m enjoying this period of almost no medical fire drills, happy doctors, good news, and most importantly a happy and healthy Max.

So my “vacation” is over and I’m back in full force, watch out Blog World I’m baaaaaaaaaaaaaack!

Has it REALLY been a month?

I realized that it had been a good while since I posted anything about "A Day in the Life of...." but when I logged in this evening I realized it had been a whole month. Yikes! Where did the last 30 days go? I'd like to say that there's been lots and lots of exciting stuff going on in the Marangella household but sadly enough we've been pretty boring. Although God knows I'll take boring over our usual brand of "excitement" any day!

To be honest I logged in tonight feeling inspired to write something profound. After all, with a view like this who wouldn’t be inspired?

And as if this view wasn’t inspiration enough there is the added bonus of sitting in a very quiet hotel room. No, I have not left my family although as I sit in a room that someone else has cleaned, watching a TV show I picked, and not screaming at anyone to do homework or get ready for bed I must admit that the idea of not returning to our insane asylum has actually crossed my mind! The truth of the matter is I am traveling this week to a client site in Montana and I thought I might find something profound to share, some words of great wisdom that have been rattling around in my head but to be honest….I got nothing! In fact, I think I’ll crawl in to bed, find a movie I want to watch and hopefully fall asleep peacefully and not from sheer exhaustion….

Here’s to a more insightful post in the near future and more business trips to quiet hotel rooms!

December in Pictures

What December meant to us....

Max's first ever clarinet recital

Benny Goodman lives.....

Zoo Lights

Accepting a donation for Max's Market from the generous folks at University of Phoenix

And perhaps the most exciting outing of all........earlier this month we received a call from our favorite Diamondback, Willie Bloomquist, asking if we'd mind him naming his new foundation at Phoenix Childrens' Hospital after Max.....

....And this is how the "Abe and Max Fund" at PCH (http://www.abeandmaxfund.com/) was born

Ready to deliver the new electronics to the kids at Phoenix Children's

The excitement of Christmas morning

Gee, I think he likes this gift! Thanks Santa!

It's Still Good....

Despite a bit of a scare yesterday concerning the CAT scan results of Max's heart and the status of his aorta and Mitral valve everything is fine, or in the words of the cardiac surgeon "perfect". Of course Max's "perfect" is relative but it's still better than "not perfect". We went from once a year visits to another valve replacement back to once a year visits in slightly over 12 hours. Just another whirlwind of emotions in the world of raising a chronically ill child.

So indeed it seems like we're done here at Hopkins for a while. Although it was decided that we could resume our every 12 month pilgrimage to our medical Mecca we have decided, together with some of the doctors, that we will return in June. Basically this decision was motivated by a few things, one, everyone thought one last check wouldn't hurt and two, more importantly we wouldn't get stuck here in the winter anymore. Obviously, although I don't want to return so soon I just couldn't turn down dispensing with our winter tour of duty.

Overall this has been a great trip and it feels good to leave knowing that Max is doing well. In fact this is probably the best he has been in a very long time. Perhaps we are finally getting some well deserved "down time". We can only hope....

It's All Good....

.....so far. Today we finished Day Two of our "Hopkins Holiday" and we have received only good news from the doctors! For the first time in a very, very long time everyone seems happy with Max's post-op status. Our G.I. doctor actually said he finds Max interesting (and who doesn't?) but he DOES NOT worry about him. I'll take that and run.

All in all it looks like we might be back to yearly visits to Charm City! Of course, it's the cardiac surgeon who has the last word on this and we don't see him until Thursday afternoon. Unfortunately, it wouldn't be the first time he has changed our plans, so I'm just cautiously optimistic at this point. But in our world any flavor of optimistic works!

The trip out was good if you overlook the 15 degrees in Denver and the fact that I got us horribly lost in the "hood" in Washington....what's a trip without a little excitement? When we finally arrived in Baltimore we were greeted by a great group of girls who had come to Children's House to serve dinner to the families. Below is a photo of Max with his girls.

Keep praying that the rest of our news is all good!

Max's Welcoming Committee

Praying Max doesn't check the blog....I sort of promised him I wouldn't post this "embarrassing" picture of him in his super-sized paper shorts snapped just before his appointment with his Orthopedic doctor.

Iron Chef

On Saturday, in the middle of the mayhem of preparing for Hopkins, Max was invited to be "pastry chef for the day" at The Phoenician, a very swank resort in Scottsdale. The task at hand? To help finish the largest gingerbread house in Arizona!

After watching the Food Network for years and years Max was certain he was up for the challenge and was sure to offer the Executive Chef and the Executive Pastry Chef a tip or two he has learned watching many episodes of "Iron Chef". Not too sure what they made of Max and his suggestions but everyone was gracious and provided all of us with a lovely morning.

It's not often that we get to rub elbows with the rich and famous!

Dressed for the Job

Hard at Work

Learning from a Pro....Executive Chef at The Phoenician

It Takes a Village to Build a Gingerbread House

Setting Up the Train

Finishing Touches

Satisfied with a Job Well Done

The Hike to Hopkins

Sunday’s the big day…the pilgrimage back to Baltimore will commence! I’d like to say that we’re packed and ready to go but alas that is not the case. One would think that having done this trip at least a dozen times I would have it down pat but somehow I do not. Perhaps I’m so good at it I no longer fret over the details, perhaps I’m just plain lazy and unmotivated, but the most likely cause is that I just don’t want to go!

There are several reasons for this: one, it’s December in Maryland which means cold and gray weather, two, the week is never anything more than a medical marathon running from appointment to appointment to appointment, and last, but most IMPORTANT is that I panic about receiving bad news. This past year has been so tumultuous I just don’t think we can handle much else so we’re asking everyone for prayers for only good news!

I’ll be updating all next week so feel free to check back in, have a great weekend!