500...

There have been many people who have come into our lives since Max was born.  Some by chance, and some we were destined to meet.  When Max first went to a neurologist for testing to see why he was always shaking when he was four months old, I had a feeling we were not in the right place.  Our visit with the neurologist, and his recommendations following confirmed that feeling for me.

We were then scheduled to meet with another neurologist at Children's Hospital.  When we arrived, the name of the doctor on the clinic room door we were shown to was not the same as the doctor we had the appointment with.  Soon, the new doctor came in, an epileptologist, who had been handed Max's case since he was more specialized in severe seizures.  Up to this point, we still had no idea what the shaking was. This new doctor came in and after short introductions, and watching every video we had taken of Max's episodes, very calmly and very positively told us Max was having seizures..."quite a lot of seizures", were his exact words.  After that, I don't know what he said.  Testing...admit him for monitoring...see what medicines will work.  I don't know.  I was sobbing.  A silent sob.  Not a gut busting sob.  So silent I couldn't hear anything else.  It was in that exact moment my perfect baby turned into a baby with special needs.  When he saw I was so shaken he stopped.  He let me cry.  He let Steve comfort me.  Then he assured us he was going to figure out what was going on with Max, and do everything he could to help him.

It was he who ordered metabolic testing.  Those tests revealed his very rare (even before we knew how really really REALLY rare he was) metabolic disease.  He admitted Max for longterm EEG testing, which revealed over 200 seizures a day.  That weekend in the hospital took a turn when we got home and we ended up in the PICU with Max in a coma to stop the seizures, and to get his newly diagnosed metabolic disease in a better state before doing surgery to remove the seizure focus, called a cortical dysplasia, the new epileptologist had identified just days before as being the cause of his seizures.  He has gone to bat for Max time and time again.  Sometimes being the dissenting voice in a room of doctors who all feel they know best for Max.  But, it was always for Max's and our best interest he spoke up.

From the beginning, we knew this was one of those people who we crossed paths with for a reason. Max and Dr. L. have a unique connection.  I think Max truly knows how much this doctor has invested in his life.  I think Max truly appreciates they have something special.  That's why when we told him very early this morning we had to wake up and get out from our snuggly covers to go see Dr. L., he smiled and laughed and said he wanted to go.  When we arrived and went over every thing with the nurse, Max kept indicating to us with his signs he was done talking to the nurse, and just wanted to see Dr. L.

Max wanted to surprise him with how big he is.  A whopping 89 pounds was the weigh in for our champ today.  That's another 5 pounds gained in a month.  Max has not seen Dr. L. in clinic in about a year.  With so many hospitalizations the past few years, we were seeing his doctors pretty regularly inpatient.  Then, with the rotten summer we had with the seizure monster, we were on the phone multiple times a week with him.  So, he knows how Max has been doing - but he wasn't prepared to see the giant when he walked in.



He was wearing a mask because we had to make sure the nurses and doctors were all feeling well before he could breathe easy.

Our visit was a good one.  Max is doing remarkably well on the new medicine.  It's something that I didn't expect.  In fact, I expected the worst side effects possible from this drug.  But, it's been the opposite.  And, Dr. L. called me on it.  He asked why I was having such a problem.  He said, "I was so surprised, you never have done this before."  He was right, I've never questioned him before, but on this one I did.  Not because of him...but because of the medicine, and because I was scared.  I told him it took me a while to figure out what it was, why I was so bothered to start Max on this new medication.  It boiled down to this has been for some time now, the "just in case" medicine.  "Just in case" the seizures get out of control.  "Just in case" the other medicines stop working.  "Just in case" it was always there to start.  We reached the point of just in case, and now there is not anything "just in case" to fall back on.   He listened to me, as he does, and nodded his head.  "Now, I see.", he said.

Max will continue to go down on one medicine until he is weaned off.  He will go up a bit ore to bridge the weaning.  We talked about all Max is doing in school and therapy.  We talked about our lives, his kids and wife.  We talked about our shared hobbies and interests.  Although we see him infrequently because of his very busy life at the hospital and academic world, he has been our friend for 10 years.

At the end of our visit, he looked at me and smiled as Steve was getting Max back in his wheelchair.  He said, "it is incredible how far he's come."   He put his hand on Max's arm and said, "I remember reading a note in his chart when he was first in the hospital, 'prognosis that he will not live long because of seizures'." We've learned through the years that most of his doctors didn't think he would live past that first hospital stay.  On Max's first birthday, Dr. L. came to his party.  He got him a large play center for toddlers.  He told us then, not for laying on the floor, for when he stands up.  He's always believed in him. They have this connection, they believed in each other, I think.

We ended our visit, with Dr. L. giving Max a few hugs.  He told him he was so proud of him.  He told him he was glad he was getting so big and strong.  He told him he was a miracle.  He's always called Max a miracle.  There is no explaining as to why he lived.

As he was giving him a hug, we asked if we could get a new picture with him and Max.  He said of course.  We have pictures through the years of them together.  This one is just as special as the first.


The first after a month in the hospital after diagnosis, surgery, and starting the road of lifelong treatment for Max.


Max saying good-bye before our year of traveling to and fro in search for something and somewhere else.  The day we made it back to Colorado he met us in the ER to treat Max's uncontrolled seizures. He hugged us both and went to Max's bedside.  He hugged Max and told us, "you can not ever take him that far away again."

  
Max and Dr. L. enjoying one of his favorite places.  He wanted to show Max this accessible lake in the mountains with a trail all around.


Today, connected still.

This is our 500th post on maxwatson.org.  Thank you all, for reading about our boy, and always offering your encouragement to him and us.