Max loves his story. He's heard us tell it over and over to many different people. He's non-verbal in the sense that most of the time we don't understand what he's saying, but he definitely makes noise in the form of talking.
He has his favorite parts of the story, that he likes to chime in on. He surely knows it by memory now. He likes the beginning. Maybe he likes how I always highlight how I was in labor for 26 hours, after they induced me a day after his due date. Or maybe he just likes the fact that he was born on Halloween night.
He'll often stay quiet through the telling of learning his diagnosis. How Steve and I didn't know why he was shaking so often, and wouldn't eat, or keep on weight. When we did find out he was having upwards of 250 seizures a day, and that he had extremely high levels of methylmalonic acid in his blood and homocysteine in his urine, he was four months old.
He lets me hold his hand, as I get through the part about how we had to spend a month in the PICU while he endured test after test, and got the biopsy results back to learn it was Methlymalonic Acidemia and Homocysteinuria, Complimentation type C. He talks quietly through the part where he underwent two brain surgeries to remove the seizure focus. He squeezes my fingers as I talk about how we learned to give our tiny baby shots every day, and devoured every piece of information we could about his new diagnosis.
We got through that initiation into the world of rare metabolic disease, and were sent home to love our child and help him to grow. He didn't eat well, sometimes I had to feed him with a syringe. And even though the surgery removed the majority of the seizure focus, he continued to have seizures. We gave him betaine, hydroxycobalamin injections, choline, folinic acid, and carnitine three times a day. Along with the different seizure medicines we were trying.
That first year was his hardest. Directly after his first birthday, we were back in the PICU for a month with double pneumonia. He was on a vent with an endotracheal tube to help him breathe. We tried three times to get him off of the vent and breathing on his own. On the third try, the team let us know that is was unlikely he would succeed in breathing on his own ever again.
This is where the story picks up, and Max's voice will raise above my own. He'll tell whoever can listen that they had him all wrong. They weren't going to give him another try, in fact, he was due for surgery that very morning to place a permanent breathing tube through his trachea. But he had other plans. Before surgery, he coughed the breathing tube out. The same one that had helped him breathe for the month prior. And due to the shift change that morning, or the stars lining up, or the fact that Max showed them he COULD do it, we avoided that surgery. And we've not had an extended hospitalization again.
He giggles as I tell of his faking falling asleep in his early days of therapy. And gets indignant when I talk about how it's still difficult for him at six years old, to sit up on his own, or roll over. Max reminds me then that he's a big boy, and a strong boy.
Max likes that he had surgery for a g-tube on the same day his baby cousin was born. We think he likes it that she doesn't get all the attention for that day. It was a long hard decision to come to for me and Steve, but once we did, we knew it was the best thing for him. On the day of surgery, Max weighed 28 pounds. A year to the day after, he weighed almost 50 pounds. At this point he likes to stretch out to prove just how big and strong he is, in case anyone in the crowd of listeners hasn't seen for themselves.
He whines a bit through the part that he can't go to school, or be out in crowds much because he's not allowed to have vaccines, including the flu vaccine. We have found out that he is allergic to the gelatin preservative that is in most vaccines, and this means in order to keep him healthy, we need to keep him out of areas that he could become infected with illnesses that take him more time than typical kids to recover from.
When we talk about how much he loves opera, he will sing a song, in a most beautiful way. He does have fans of his own in opera houses around the country. They called him on his fifth birthday to sing to him from New York, San Francisco, Los Angelas, and our own local friends at the Colorado Opera. He has attended once as a special guest where he sat in his suit and watched an entire opera in the box seats, only singing along a couple of times.
And when we bring up his beloved ocean, he will emphatically say he wants to go there. It's his favorite place to be. He digs his toes deep into the sand and lets the waves lull him into a nice rest where he'll happily stay for hours on end.
He's especially keen on talking about his new van these days, and how it helps us take him and his wheelchair everywhere we need to go. This summer we'll be taking him for a second visit to the NIH to see Dr. Venditti. I know they'll be surprised at how much he's grown since the last time they saw him.
Max has an amazing story to tell, and we are always happy to share it with anyone who is interested in listening. There were a few times we thought we were going to lose him. But he's a fighter. His name, Maximilian Martin, means "Greatest Warrior". He has certainly showed everyone who has helped him get to where he is today that he is indeed a warrior in this fight against MMA.