7th Grade Ends, New Adventures Begin

As the school year winds down with one bang, Max will be starting off his summer vacation with another BIGGER bang! As of tomorrow morning Max & Co. will be off on Max’s Make-a-Wish trip…. a Mediterranean Cruise! There is absolutely no way we will ever be able to thank Make-a-Wish and all the generous donors who make wishes come true for such deserving children. This entire process has been so truly wonderful, we’ve met so many great people and had so many incredible experiences.

There are so many people to thank for the memories that are being created that I don’t even know where to begin. First and foremost there are our Make-a-Wish friends: Max’s Wish Granters, Robert and Sheri and his Wish Manager, Carlos. Also a HUGE and special thank you to Maggiano's - Little Italy Restaurant in Scottsdale for giving Max such an amazing send-off party and Brooks Brothers at the Biltmore Fashion Park for so elegantly outfitting us for “Formal Night” on the cruise.

Stay tuned, we will be updating here with the latest news and pictures of “Max’s Mediterranean Adventure”. Arrivederci tutti!

7^th Grade Outstanding Science Student of the Year

School's Over, Let’s Go Home

Max and His Wish Manager Extraordinaire Carlos

Captain Max Prepares to Set Sail

The Golden Rule

A few months ago we were approached by a lovely young woman who is a journalism student at Arizona State University. She was working on a project about “The Golden Rule” and wanted our permission to spotlight Max and his involvement with Kids Playing for Kids. She came out and interviewed all of us including Max’s superhero “Coach Tav” but we never heard anything else….that is until last week when I was researching something else for Max and I came across this video. All I can say is that I wished I had been smart enough to realize she might have been using the video for something that was going to be placed on the world-wide web.…I might actually have combed my hair!

A Lot of Days in the Life of Max &Co.

It was brought to my attention recently (OK more than once by both Michele and Max) that I have really sucked at keeping the blog updated. I really don’t know why I haven’t updated these last few (OK, many) months, perhaps we’ve become boring (hardly!) or perhaps I’m just lazy (this option gets my vote). Either way I’ll do my best to bring everyone up to speed.


On the medical front, we have been our version of relatively calm. This means that we have only had a few new diagnoses pop up. The most notable at the moment is the possibility of rheumatoid arthritis in Max’s hands. The jury is still out on this as we are awaiting several test results to come back. In the meantime we have added twice weekly sessions of intensive occupational therapy for his hands as well as added a new specialist to our “dance card” at Hopkins. That’s right folks we are already set for our yearly pilgrimage to our Mecca known as “Johns Hopkins Children’s Center”. Most people are attempting to exit the frigid northeast while we desert rats are actually charging ahead praying for double digit temps and less than a foot of snow.

Max has also been “rocking it” on all academic levels. He has made the honor roll each quarter and continues to excel and grow in all areas. Once again he has some great teachers that have been putting up with me, no small task and really helping Max succeed. On the extra-curricular front Max was just named student coach/manager of the school’s baseball team. For those of you who know Max this is a perfect fit for him, he’s in seventh heaven!

So there you have it, a very quick update on “A lot of days in the life of Max & Co.”

The Week's Wrap-Up

So first things first....I know I owe a lot of you an explanation of last week's "fire drill" but I have been so burned out and running on empty I just never got it together long enough to sit down and blog. 

Very, very long story short after seeing our cardiologist last week it was decided that we needed to do some further testing to get  a better view of Max's entire aorta, not just the small piece that an echo cardiogram reveals. The most desirable test would be to do a cardiac MRA/MRI but those take months to schedule and there was no place to "shoe-horn" Max into the schedule so it was decided that we would do a CAT scan with contrast. That's where the real fun started. We went to Radiology on our way to another doctor's appointment where they were kind enough to fit Max in immediately. Once done we were on our way to Hematology which was meant to be our last appointment of the day. I was no sooner in the exam room with Max and Michele when my phone (actually both of them) started ringing and beeping as if it were the end of the world. The first message I received was from Libby, Cardiac Nurse Practitioner Extraordinaire, it went something like this...."don't worry but call me right away". These two phrases just don't go together, even on a good day. When I called Libby back it seemed the scan showed multiple blood clots on Max's portal vein or the vein that feeds the liver with it's blood supply. This was a two fold disaster in that it meant we could be incurring liver damage as well as the possibility of throwing a clot to his heart. Never a good thing but especially bad for a kiddo with an artificial heart valve. We were told to hightail it back to Radiology ASAP. I spoke to the Hematologist after sending Max out of the room so as not to scare him too badly. At this point I was violently shaking because I knew this was a new and very serious issue. Dr. Keefer, sent us straight over to the Hospital, calling over to let them know we were on our way all the while reading the scan himself. He looked pretty sober as he read the images on the computer screen. Now I was beside myself. When we got back to Radiology there were three high level techs and two or three doctors waiting for Max. It was surreal to see their attention and speed. I sent Max into the room with Michele because there was no way for me to hold it together and not scare Max. I sat in the waiting room with Libby and sobbed. I was given consent papers to admit Max to the Cardiac ICU for immanent procedures to rectify the blood clots. After what seemed an eternity one of doctor's emerged, his first phrase was, "It's good news". Libby and I screamed and hugged and were barely listening to the poor man by this point. So here's the short part of this long story. It seems that after multiple heart and abdomen surgeries Max's anatomy sucks (surprise!) and the contrast given during the scan never made itself all the way through his veins to illuminate the area around the liver. Evidently "black" on a scan means no blood flow which means clots. So strange anatomy coupled with a vein system that has created what they call "collateral veins" made by the body to compensate bad blood flow gave the impression of blood clots on the CAT scan. Via the ultrasound they performed with Doppler they could see that the flow was fine, "special" but fine. Thank God! 

As you can imagine after all this excitment things got pretty boring, boring as in routine check ups! In the end, everyone was happy with Max's health status terming him stable (at least for now) and we can wait a year before we need to return. Obviously this could change on a dime but we'll take it and run! On our way out the door to the airport and on our way home. Hallelujah!!

Where in the world is Max and Co.?

If it's June it must be Baltimore! This is our annual fun-filled, all inclusive stay at the world renowned resort known as Johns Hopkins Children's Center. Although we are in the midst of our dawn to dusk ritual of doctors' visits, blood work, x-rays, ultrasounds, and Max's personal favorite CT scans (yes, I'm making that part up) we did find a few hours to visit Washington, D.C. last night. In the last few years we have tried, as much as possible, to throw in a few fun moments into these trips so that the kids won't be completely miserable.

I'm glad we did this yesterday because today ended up being quite scary and emotional, so much so that I am too drained to even write about it tonight. Suffice it to say it was another one of our famous "fire drills" and we thank God it all ended well. More info tomorrow.....

First Stop - The Vietnam Memorial

Second Stop - The Lincoln Memorial

The boys taking a break 

A family with a view 

Mom and Max

I love this city!

Max at the Martin Luther King Memorial Under a Favorite Quote

"Trailblazer of the Week"

Today has been just another day in Max's "big week". Beyond yesterday’s award ceremony this was also Max’s week as “Trailblazer of the Week” for his classroom. What this equates to is a Popsicle and certificate from the school and snacks and a “show” provided by Mom and Dad.

By the way, I should mention that next week will be just as “big” as this last one has been. Next Thursday is Max’s 12th birthday and all I can say is, “where the heck did the last dozen years go?” I guess Max is right it really is all about him! This is his “Birth Month”, you see Max has never celebrated just one day, he believes it should be a month long activity-fest!

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He Did It! He Won!

Today 126 of Gilbert, Arizona's best and brightest were honored during a "Character Counts" award ceremony for the District's elementary school students. As some of you might remember from an earlier post Max's wonderful teacher, Mrs. Funkhouser, nominated him for this award and this morning Max was honored as an "Outstanding Nominee"!

To say tears were flowing would be an understatement. This morning I realized just how many people love and respect Max for who and what he is. They don't see him solely for the challenges he faces medically or the courage he shows as he does so, instead they see him as the kind, loving, gentle soul he is.

 

Max is so proud of his metal, especially because they spelled his name correctly!

Max accepting his award from the Mayor and City Councilwoman.

That trademark smile we love so much

Max, Mrs. Knoph, and Mrs. Funkhouser

These two ladies will never know what their love for Max means to us. Because of them we can send Max to school each and every day and know that he is loved, respected, and extremely well taken care of. Mrs. Funkhouser and Mrs. Knoph we love you both to bits!