Apples and Oranges...

This past weekend, we got together with a group of families in Colorado who all have a type of Organic Acidemia like Max.  There were super little babies, all the way up to teenagers who have started to drive.

It always amazes me when we get together with families with the same or similar metabolic disease that Max has.  The spectrum with these diseases is so broad.  There are kids running around, talking and playing.  There are older kids who look as healthy as our teenager without an OA.

And then there's Max.

It's always so stark to me.  In a group of kids, all living with such a serious diagnosis, he tends to be the "worst case".    Of all the kids there, he was the lone ranger who wasn't playing, wasn't eating the picnic food, wasn't running around, wasn't nagging at his mom to go to the bathroom, wasn't talking to the others around him.

 Early in the journey, we were told over and over, "Don't compare...all the kids are so different.  It effects each kid in different ways."  So, when we get together with other families,  I do try not to compare.  But, being a mere human when I don't have my Supermom cape on, I do compare.  How can you not?

Then I think of the new parents, with the little babies, who were caught by newborn screening, and whose babies have mild cases.  I look at Max through their eyes.  And suddenly, my "perfect boy" turns into a giant disabled kid.  And I hate that.  I hate that my blinders get taken off.   I hate the fear that must go through their mind..."that could happen to my baby".   One bad episode of acidosis...and boom.   I hate that we're perspective to other families.

He got the short end of the disease stick.  We know that.  His doctor once told us that he's never seen a child so severely affected, and on the flip side of that, he's never seen a child respond so well to treatment as Max.  He's an enigma, in that he was so very sick when we brought him in for seizures, and found the metabolic disease, that they truly didn't believe he would come home alive at four months old.  They couldn't believe he was alive to that point. But with treatment, he rarely has to go in for actual metabolic disease treatment.

It takes me a while to shake off the feelings of comparison...but I do.  I have to.  What good is it to compare?  We've all got our own trials having children with severe metabolic diseases.  And takes just one terrible illness to throw any of them into a tailspin.  So, I smile and learn about the other families.  I introduce Max with a proud smile.  Because while he looks like the worst case...he's really a living reminder that miracles do exist.

And no matter what, he's still my perfect boy.  Always my perfect boy.

Chilly Max...

If you have followed Max's blog for a while, you know that he's rarely known as "Chilly Max".   It's more like "Sopping Wet Sweaty Max".

There are a number of reasons Max has trouble staying cool,  it is common in people with metabolic disorders to have a hard time regulating their temperatures.  Also, his brain is not wired quite like it should be, and that can play a role in it too.  So those two reasons, and an immobile child lead to some very hot Summers for him.  And Spring, and Fall, and Winter too.

We try to keep our house at around 64 degrees in the Winter.  Max is happy to sleep without covers on year round.  In the Summer, it's difficult to keep the house cool enough for him.  Already, in May we're having to turn the air conditioner on to keep him from getting too hot.

A too hot Max, can lead to a seizure having, sweating too much to make his metabolic levels get wonky, dehydrated Max.  And that's not fun for anybody.

In an effort to keep Max cool, without giving the rest of the house hypothermia, I've searched out cooling devices for him.  Last year we got a portable swamp cooler to run near him when the weather gets into the high 90's or 100's.  (And yes, it does get that hot in Colorado...for a couple of weeks at least.) We have black out curtains in the main levels rooms, and keep them all drawn during the day.

We got Max a cooling vest, which seems to help if there is a breeze to actually cool him.  If there isn't, it just turns into a warm wet vest, quickly.

We are weighing our options right now, on using money in his trust to pay to get the air conditioner fixed in his van, or to pay for another year of music therapy.   If this early Spring has been any indicator, we should fix the air conditioner, or plan on spending all of our time indoors this Summer.

These past couple of weeks it's been getting hotter every day.  I read on a fellow mom of a super-hero's blog  about how her son used a Chilly Pad at night to sleep when it was hot.  Her sons have a similar metabolic disorder to Max's, and getting hot is serious business to them too.  I looked into this "frog cloth"  to see if it was something that might work for Max, since it seems to work for them.

I ordered the Frogg Togg Chilly Pad  in bright YELLOW from Amazon.com last week, and it got here on Saturday.  Saturday was 60 and raining, so we didn't need to use it.  But today, we were back in the high 80's and the house had reached 80 inside by 5:00pm.

I opened up the package and rinsed with warm water like instructed on the packaging.  I wrung out the excess water, and then draped it over my arm to see what it did.  It did not feel wet, just cool.  It wasn't terribly heavy, which I expected it to be filled with water.  And then...it turned COLD!  I made Steve and Abbey feel the magic before we put it on Max.

At first, we put it behind his back on his chair to see if it would keep his back cool.  That's where he gets the hottest.  I think it must have kept his back cool for a couple of minutes, but when we lifted him forward to check it, I could tell it was already warm to the touch, and probably not that comfortable.  Then, I put it around his torso so the air could still touch it, and continue to cool him.  This seemed to be a better solution for him.  I think then he's in his wheelchair, we could drape it around his shoulder like a scarf, or around his legs or on top of his head.  We're not going for good looks when we're trying to stay cool.

In the end, he liked hugging it, and laying on it draped over his pillow.  I think the key is making sure air can touch it, so it stays cool.  It won't work if he's got his back up against it.  It stayed cool for about 4 hours without needing more water.


(It's folded in half length wise, and still covers his whole torso.)

And here's a little video of him telling me he likes it, and to not take it away from him.

If you're looking for something to help as the heat turns up, order one of these.  I'm not being paid for my advertisement of this product, nor does Frogg Togg know who we are.  It's just a good product, and I wanted to pass it along, since I know this is a problem with so many people who have trouble regulating body temperatures like Max. 

Respite...

When friends have asked in the past what is the hardest part about our lives with Max, I say one of two things.

It's the isolation so much of the year, due to not being able to be around crowds, and germs.

and

Not getting to go out with Steve very often.

Since last August, Steve and I have been out together five times.

That's about once every two months for the past 9 months.   We're very appreciative to everyone who has given us the time away, but these times are just so few and far between.  There are a lot of reasons why it's worked out this way.  No one is to blame...it just is, what it is.

Tonight we got out for a full five hour respite time.  As we drove to dinner, Steve and I were exchanging yawns.  

Then through dinner, we yawned some more.

We popped into a few stores and more yawning.

I wasn't tired necessarily, just a couple months of not being alone with my better half was coming out in the form of a huge yawn...relax...yawn...relax....yawn............r.e.l.a.x.

And then it was 8:00, and time to head home to get Max into bed, and give him his medicine.

We've been working hard to set up some more respite times through the summer, when we're not so worried about germs visiting our house.  Maybe we'll be able to go out without looking like we're the most bored couple in existence, and make it through dinner without yawning the entire time.