Words to Live By

During an e-mail exchange with Max's fabulous 6th grade teacher she reminded me of one of my all time favorite quotes. What I love even more is that she truly embraces this both in her own life and her classroom. Max and I are some pretty lucky ducks to have such a wonderful teacher in his life this year! 

"Everybody is a genius. But, if you judge a fish by its ability to climb a tree, it'll spend its whole life believing that it is stupid."

--- Albert Einstein 

P.S. Another big plus with Mrs. Funkhouser is up until now she's still putting up with me! However, it is only August and Michele is convinced that not even a saint can make it until May with me. He should know we're married 17 years today :)!

Hope Wanes

So far the news this week is mixed, generally good but as is typical with Max there's always something.


Starting with the good news:

• Dermatology can be checked off the list for the next 12 months as they found no changes in Max's numerous moles and other skin ailments. They sent us on our way with some ointments and a fond farewell.
• GI was happy overall but they are quite concerned with the fact that Max is starting to fall off the weight charts. This may be due to several things, impending puberty (say it isn't so!), decreased appetite or simply a growth spurt. Their biggest concern here was that if Max were to get seriously ill or need another cardiac surgery (again, say it isn't so!) he would not have the reserves necessary for a smooth recovery. With a good blood panel measuring the quality of Max's nutritional state and the instructions to step up the calories we can also check them off for 12 months.
• Hematology, the jury is still out on this one until some important blood work comes back looking at Max's blood clotting factors and other antibodies that were present in his blood after last summer's surgery. Either way we should be OK to cross them off the list for a year because no matter what the results are there's nothing that can be done to improve things other than wait and see what happens.
• Ophthalmology found Max's vision to be 20/20! His eyes still turn out a bit but his depth perception seems slightly improved. Continue the eye drops and see ya in a year! Check!

Moving on to the "iffy" news:

• Cardiology, ah good 'ol Cardiology. Here things are a bit sticky, as they always are. Max's echo cardiogram shows some changes on the right side of the heart and his pulmonary valve. I am REALLY starting to hate valves! We were told that this valve is usually slow moving as far as deterioration goes but heck we've heard that before and yet still ended up with major cardiac surgery. This has Michele and I concerned in light of the GI and Hematology concerns I listed above. We were told that echos would have to be done every three months at home and with each set of results Hopkins will evaluate when they want to see Max. Probably not checking them off for 12 months......

The "we don't know" news:

• Pulmonology we haven't had that visit yet so who knows? Stay tuned here.

So there it is Ladies and Gentlemen, Hopkins in a nutshell. Positive thoughts and lots of good echos are what we need at this point. 

On the Road Again

Early tomorrow morning (very, very early, 4AM to be precise) the Marangella's will be taking the show on the road. We're on our way back to Hopkins for one last set of evaluations and tests before the doctors determine if we can be "cut loose" to a once-a-year schedule. It has been so long since we've only had to make the pilgrimage once a year it doesn't seem possible. This possibility seems even more precarious when you consider that the pontifical blessing must come from no less than eight specialists. Fingers crossed that Max can impress all of them. Prayers please!


Stay tuned for updates in our quest for normalcy and a reprieve from our only "vacation" spot!

il Nuovo Maestro Gelatiere

This weekend Max was invited to create a "new" flavor of gelato. The invitation came from a new Gelateria in Scottsdale, Cool Gelato Italiano, who is generously working with Phoenix Children's Hospital to raise funds for the kids. As always Max was super excited to formulate a recipe for his favorite treat and his winning entry was Greek Yogurt with Honey.


On Saturday we were invited to the "unveiling" of Cool Gelato's interpretation of Max's creation and it was nothing short of DELIZIOSO! We were warmly greeted by the owners Letizia and Alberto, and Massimo maestro of artisanal gelato and we are thrilled to say that we have finally found the real deal! Ladies and gentlemen true Italian gelato has arrived in Arizona! Run don't walk to Scottsdale and if you get there soon enough you might even be able to try Max's recipe! 


Enjoy the slide show and if you do get down to Cool Gelato Italiano tell them Max sent you!

Max's Weekend

And once again, the Cardinals take the trophy! This past Saturday marked another round of Flag Football Championship games and I am happy to report that Max and his teammates took trophies home again! A big "thank you" goes out to Kids Playing for Kids for giving Max this incredible opportunity. And as always a congratulations to all the boys, and believe me a better group of kids would be hard to find, they all have incredibly big hearts and compassion for Max plus they rock as athletes! Their parents have much to be proud of.

 Spencer, Tanner, Max, Tyler, and Billy after the Post-Game Activities

Mom and Dad with their Star Player

Famous American

A few weeks back Max came home with a rather large, multi-tasked project entitled "Famous Americans".  The kids could pick their subject and Max apologized to me for not picking George Clooney but rather doing Steve Jobs, "for Daddy". Isn't it just like boys to stick together? This is Max's final product, the only help I gave was sewing Steve's black t-shirt, the rest I left to Max and Michele - that's what you get for not picking George, left them on their own!

Max's 5th Grade Project:

Steve Jobs - Famous American

Another Miraculous Year!

I admit that every year as May approaches I spend a lot of time reflecting on things I spend the rest of the year trying to forget. For instance, I remember that first year on the 4th floor of the “old, old” Phoenix Children’s Hospital when absolutely nothing seemed certain. Sometimes we lived day by day, others it was minute by minute. Doctors promised us nothing and we learned to count on exactly that…nothing. But through it all we had faith, faith in God and faith in our son. Somehow, someway we knew we would all make it through. And we did, here we are an incredible 11 years later and Max is not only surviving but thriving!

How did we get to a place where my “baby” was turning 11 years old? Some dark days may have dragged but oh how the years have flown by! Last Wednesday Mr. Max turned 11! Many would consider this a miracle and I admit we can be counted among those who do. This is especially true in light of the many “events” of the last year, it seems incredible that just twelve months ago we were preparing for another open-heart surgery not a birthday party. To see Max running around during his “Birthday Festivities” (of which there were many!) we nearly forgot just how sick he was this time last year. It truly is nothing short of miraculous!

Max, we wish you a very happy and HEALTHY year and a hundred more to come! No words adequately express our love for you and our awe of your courage and strength. We thank God everyday for the present that you are!

Now for the fun….enjoy this video of Max’s class singing to him and enjoying a cupcake treat!