Saturday, December 31, 2011

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!

Thursday, December 8, 2011

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....

Tuesday, December 6, 2011

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.

Monday, December 5, 2011

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


Friday, December 2, 2011

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!