Life Through the Eyes of an Eight Year Old

Max has always had a very keen sense of his surroundings, his "people" (as he calls us), and the general state of all things important. So recently I started to take note of some of Max's one-liners, some I have heard firsthand from my son, others unfortunately have been shared with "outsiders" suggesting that more people than I know are privy to the insanity of this family. These thoughts are in no particular order mostly because you just can't organize crazy.

1. Our house is OK.....if you like loud.
2. Ellie is as crazy as hot sauce.
3. Mommy and Daddy can't love one another anymore -- they're married!
4. Do all Moms drink wine when they make lunch? (Hey wait, I wasn't drinking it I was cooking with it....)
5. I don't have to do what my parents tell me to do because they can't remember what they told me to do.....(has my son pre-diagnosed us with Alzheimer's?)
6. Daddy didn't used to yell but he lives with Mom and we all know how that goes....

I could probably continue this list but I think I've embarrassed us enough for one night.....

Enjoy the remainder of your weekend all!

Anniversary Number Two

Today marks yet another anniversary in Miracle Max’s medical journey – it was two years ago today that we brought Max to Johns Hopkins for his second open heart surgery to replace his dangerously dilated aorta. Thus began our yearly pilgrimages to Baltimore to ensure that Max receives the very best care available to him. We are beyond lucky to have been referred to these physicians, our adored cardiac surgeon here in Phoenix gave Max the gift of another chance at life with both his own hands during that fist cardiac surgery and yet a second time when he referred us to the program at Hopkins. Strangely enough both of these wonderful surgeons are Italian….Michele does not think this is a coincidence but rather confirmation that Italians are naturally the best at all they do!

So once again we thank all the doctors who have cared and continued to care for Max at Hopkins, one of the largest and best medical facilities in the world but yet they know Max and me (imagine that, I’ve made a reputation for myself even 3,000 miles away) by first name only.

Thanks for checking in!

"Normal"

When you have a child with multiple defects to multiple organ systems there is nothing more wonderful than hearing the word "normal" to describe any medical test results. I liken this phenomenon to winning the lottery because our odds of hearing the word "normal" in relation to Max's medical status are about the same as our winning the lottery. Yesterday we won one of the biggest lotto payouts ever, Max’s recent GI testing has been reported as “within normal limits -- not bad for a kid who was born with just half an intestine! In fact, the upper GI showed delayed emptying (this is a good thing as it means Max is absorbing more nutrients then we had previously thought) which is the exact opposite of what you would expect in a child with a short intestinal tract. Whoopeeeeeeee, Michele and I were right again, Max is indeed defying the odds!

It's all about faith my friends, faith in your child to continue to surprise one and all, faith in your own ability to know your child better than any medical professional ever could, and faith that in the end it will all be OK....or at least as OK as it can be.

A Bittersweet Anniversary

Eight years ago today Max was a teeny tiny six week old facing his first open-heart surgery. The thing I most remember about that day (other than the crash cart that went flying into Max's room moments after he returned from the OR) is when his surgeon told me that had it been just five years earlier he would not have been able to perform this surgery on Max. Medical science had advanced enough in a few short years to save my son's life.....talk about putting things into perspective. This doctor will ALWAYS have my undying gratitude, respect, and love. For those of you who know me there are precious few doctors I will say this about.

Today I feel blessed. Blessed for the child I have been given as a gift from God and a nudge from a very special sugeon who although mortal has some god-like qualities in my book.

Testing One, Two, Testing….

Max has spent the last week or so at Phoenix Children’s having a barrage of less than pleasant medical tests. Although he had his emotional moments ranging from anger to frustration his sense of humor prevailed, making everyone laugh. Max came through like the trooper he is. Mom and Dad not so much….during the first test in a room full of doctors, nurses and techs Max loudly announced that Michele and I “owed him!” for what we were putting him through. While I would usually blame the prescribing doctors for the torturing of my son this time I had to take on the guilt myself (good Catholic girl that I am) because we were subjecting him to tests we weren’t convinced he needed. I guess we really do “owe him”. As of this morning Max is officially done with PCH and medical torture, which means our emotional torture begins as we wait for the doctors to get back to us with results. We’re not holding our breath…

Other than our time amongst medical professionals our summer is off to a good start. Although Michele hears gales of “I’m bored” during the day our evenings and weekends have been full of fun activities: ball games, birthday parties, movies, and even the circus! I need to take a moment to thank Wendy (our favorite Child Life Specialist at PCH), Kids Playing for Kids, and HopeKids for keeping all of us so entertained. Arizona summers are as hot as they are long so a few enjoyable diversions are always welcome!

In other news, I just received a letter from Hopkins reminding me it’s time to start coordinating our East Coast tour in December so at the moment I’m in the thick of that administrative task. Strangely enough Max is looking forward to the trip, but I think his excitement is based on getting to ride in a plane and perhaps see snow, mine is based on the stress of the whole thing.

Have a great Wednesday all, as for me I’m just concentrating on being halfway through my week!

Top Models

A few weeks ago the kids were invited to model for Phoenix Children's Hospital's annual fashion show. Although this was an experience I'd like to forget (have you ever tried to get a teenager to agree to wear a certain outfit or convince an eight year old boy that modeling can be fun?), I think their pre-performance shots came out great! Max complained for weeks that he had "quit that stupid show" but in typical Max fashion (no pun intended) he was the star of the show. He walked the runway sporting his huge trademark smile, blowing kisses at all the ladies. Afterwards many of the socialites in attendance came up to me to tell me that Max was just the cutest thing they'd ever seen. Can't say I disagree with them!

So after weeks of practice and drama the kids did a wonderful job and asked if they could do it again next year, confirming that my children truly are trying to kill me..........

Faith.....

As my last few posts have indicated life has been anything but smooth at the Marangella household of late. In fact I have been so consumed with problems, perceived problems, and various other disasters I have had little time or desire to write about anything at all. Every once in a while I have a week or so of what I refer to as “poor me – itis” and this has been my week! Mostly I think this happens because I am so mentally, physically and emotionally exhausted I allow any little thing to drag me down. Then I start to feel guilty…..after all our problems have all been of a “fixable” nature, many are not so blessed. I remind myself that I just need to have faith that things will be OK and I shouldn’t sweat the small stuff. For those of you who know me telling me to not obsess would be like telling me not to breathe…..

One of my favorite quotes which I have held dear since Max’s birth comes from a very wise man, Martin Luther King, Jr., who said "faith is taking the first step even when you don't see the whole staircase". Pretty much sums up the last eight years of our lives, huh? We have been walking in the dark with Max since the very beginning. We gave up long ago on ever seeing the light at the end of the tunnel because there isn’t any. This doesn’t mean that life is a disaster, it just means we have to take it one step at a time with the faith that the staircase is there and we will not fall. It is important that we not get ahead of ourselves, worrying about what might happen when we need to concentrate on what is happening. Again for those if you who know me…..

So what if this week what was happening was several unforeseen big ticket items and a sick child? We got the repairs done and Max seems to finally be on the mend. Life is good and I’ve stopped my complaining. Once again, for those of you who know me I never really stop my complaining…..a girl’s got to have at least one addiction right?

Have a great rest of your week, I know I’m planning to!

Post Note: As I was getting ready to hit the Post button on this my phone rang, it was Johns Hopkins confirming that Max’s aorta looks stable. The recent ECHO measurements reflect the measurements from the December MRI so for now all is well on the cardiac front! I really do just need to have faith!!!