Sunday, August 3, 2014

Growing up...

Max is currently having one of his "hulk moments."  This is when he's not entirely upset, or mad about something...but puts every single ounce of strength and energy into moving his whole body, while snorting and biting his hand.  He goes through these spurts, then his body relaxes and he slows his breathing, sometimes with sweat beading on his brow.

If he didn't come out of them so quickly and didn't look so completely alert and present through them, I might think they were seizures.  But, they aren't.  They're just part of growing up.  For Max, growing up has come a little earlier since he had an injury preventing him from growing up at a normal rate.  He has to take artificial testosterone injections monthly.  The first couple of days after his injection are typically the worst.  He's hot, he's cold, he's hulking, he's crying, he's laughing, he's sleeping, he's wide awake.  But, we get through it each time, and try to remind ourselves constantly he doesn't like any of this any more than we do, in fact, probably it bothers him much more than us.

Speaking of seizures and growing up, that's another know, it might happen, okay it probably will happen, but we can't tell you when or what will trigger them.  I think that really hit last summer, as we haven't seen any seizures since last summer.  He's really been doing well on the seizure front.  It's amazing what sleep will do for a person with epilepsy.  His nurses help him stay asleep, repositioning him through the night without him having to wake all the way up.  With us, he has to wake us up, and then get back to sleep.  It's a rotten pattern, and no wonder his brain was always exhausted.

Because his seizures have been so well controlled for nearly a year, his neurologist wanted to back him down off of one of his seizure medicines.  This medicine was the first to effectively stop seizures in Max.  It's a very slow wean over 8 weeks.  I've made up a chart, divided into morning and evening doses, amounts to give, and a place to initial for all of us who give Max his medicine.  I'm not looking to miss a dose or mess up a dose with such an involved weaning schedule.  He's gaining weight, we know by how heavy he feels when we reposition him, or pushing his wheelchair.  We've had to order a special hanging scale to attach his sling to from the lift to see exactly what he weighs.

Max's health overall has been quite well.  Very early on in our learning about his metabolic disease when he was a baby, I would always look on in wonder at the older kids.  They had made it through the early childhood illnesses, and rarely had hospital visits as they grew older.  I didn't know if this was because their bodies got better at fighting the illnesses, or the parents got bolder at fighting for them.  I got to meet a few of these older kids in person last week at our family organization for Organic Acidemias convention in Washington D.C., and I can say it's probably a bit of both that keeps them going.  These adult children have fought, and continue to fight on.  And the parents are incredible. There were moments I was caught with a lump in my throat at the sheer amount of strength in that room.    We were listening to the adults/children living with these diseases, and each time they were encouraging each other, and us parents.  It was really incredible.

I guess Max is getting to that point that we may not go to the hospital for every little thing.  Granted, he can throw us a fast one at any point, so don't think for a minute I'm not knocking on wood after every sentence I type.  Since March, we've been dealing with some bowel issues that we can't pinpoint. We've run tests, and are waiting on more tests, and more specialists.  We're watching him very closely for any sign at all that he's not feeling well with it all.  But, he is good.  He's growing up, and feeling good.

That's a weird place to be for this family.  We don't take a minute of it for granted.  It's a mixture of caution and wonder and gratefulness that he's had such a long stretch of very good health.  After 10 years of a whole lot of excitement, it's been really good to take a breather.

Max is gearing up for one more concert before the end of summer.   And he'll get to soon meet his 5th grade teacher and classmates.  Then we'll be back to regular schedules, and cooler temps to get out on his bike!

Hulk Max

1 comment:

Elizabeth said...

Oh, I'm so happy to read this and have every available limb and finger and appendage crossed for you as well! You have been an awesome family for Max -- and how great it must have been to hang with your "tribe" for those days in D.C.