We're off to see the wizard(s)....

Today I got what should be our finalized schedule for our first two days in Baltimore. My first comment on this schedule is, "God bless Gretchen our genetics counselor!" She really bent over backwards to make sure the bulk of Max's tests, appointments, etc. will run smoothly so that all of the docs will have the info they want/need beforehand so we can all review results together. My second comment is, “Tell me you’re kidding, I don’t remember signing up for a marathon!” I think you’ll better understand this when you get a peek at our schedule:

Monday, December 8th –

6:30 am - Our first appointment is for Max’s cardiac MRI which is by far the worst of the tests he’ll need to have (or so we hope). It’s a difficult test for Max because he has to lie perfectly still for more than two hours in that horrible machine while Michele “talks him through it”. For anyone who has had a MRI and knows Max I think you can understand why we all dread this test the most. As an added bonus we get to do this at 6:30 am, need I say more??

Noon – We’ll meet with Max’s cardiac surgeon, Dr. Luca Vricella, to go over the MRI and get his input on Max’s heart valves, abdominal aorta and any leaks which might have gotten worse. We absolutely adore Dr. Vricella and Max loves that he can talk to his doctor in Italian! Fingers crossed that he’ll be happy with what he sees on the MRI.

Tuesday, December 9th –

9:30 am (we get to sleep in) – Max has a cardiac echo to check for many of the same things the MRI did but will give the doctors another view. This test is nothing more than an ultrasound which Max is so used to he often falls asleep during them…actually, so do Mom and Dad because they turn off the lights to do it!

Noon – We’ll be seeing the “star of the show”, Dr. Hal Dietz. Dr Dietz is known around the world for his work with children who have connective tissue disorders. This is the man who finally figured Max out (no easy job) after more than six years of our going from doctor to doctor. All of these doctors had the same answer, “It’s just Max.” Dr. Dietz is different. When we met Dr. Dietz shortly after Max’s surgery two summers ago he spent more than four hours with us talking, going over history and examining Max. He promised us that he would get us an answer and he has! I used to say that I didn’t need a name for what Max has, now I tell Dr. Dietz when he figures it out I get copyrights!

Whatever time we finish with Dr. Dietz (how’s that for precise?) – We run no less than six city blocks to get to Max’s GI doctor, Dr. Tony Guerrerio, so he can fit us into his schedule. Last year he fit us in at the last moment when Dr. Dietz asked him to so we know this drill well. He always gets us in and spends his time reviewing everything from Max’s nutrition and vitamin levels to his growth and more.

Now I must remind everyone that this schedule only covers Monday and Tuesday because the rest of the week we’re at the mercy of all these doctors and whatever other tests, lab work or appointments they feel Max needs. But we’re happy to do this because we know how lucky we are to have Max being seen by all these doctors. I can't think of a better place for Max to receive treatment than Johns Hopkins - the doctors and hospital are world-class yet they still find the time and make the effort to make each patient and their family feel like they are their only patient. Just imagine that I can call any of them and say “This is Max’s mom” and they know immediately who I am! It really amazes me that they can remember anything in light of the thousands of people they see each year from all over the world. We thank God every time we remember when our surgeon here in Phoenix asked us if we could take Max to Hopkins, God bless you too Dr. Teodori – you saved Max’s life again!

In closing, keep Max in your thoughts, we have another long day at Phoenix Children’s tomorrow, thankfully we’ll be seeing a doctor we all like and Max won’t have to do any painful tests. Both of these things are always a plus! Have a great Wednesday…..