Month: November 2012

Study update – Week 3

Study update – Week 3

Melissa

If you want to know how Week 1 and Week 2 went, check out those links.

I wish I had something amazing to say about our study experience but so far…we are just not seeing any major changes here. As much as I tried to prepare myself for the possibility of getting the placebo, I was really, really, really hoping for something else. As much as I am reminding myself that we very possibly might be on the placebo a new fear is creeping in…

What if he’s getting the full dose, and it doesn’t work for him?

Of all the possibilities that I ran through in my head, I knew that this was one of them. But knowing it and knowing it are very different once you’ve left the land of “what if” and are standing smack dab in the middle of “what is.”

Not all of the boys on the study have improved on this drug. We knew that from the stories people had shared and we knew it from the researchers and FX experts we’ve seen. This drug is doing amazing things for some of the kids participating on the trial but no one ever, ever, ever said this would be the cure…that this would fix it.

As a parent, I want nothing more than for someone “in the know” to give me some guarantees but they can’t. In all likelihood, this will help some but not all. In all likelihood, we’re still looking at a combination of drugs to fix what our one little broken gene has done. It’s supremely frustrating.

I keep reminding myself to be patient, that we are less than 2 months away from knowing for sure what the outcome will be on this particular drug. That whispering voice is becoming more and more distracting though. I find myself gazing out the window lost in thought trying to remember what it was like before. I find myself watching Monkey’s every move trying to decide if he’s doing more or less of that particular behavior. It’s enough to make a Mama crazy, and this Mama really didn’t need any help in that department!

51 more days. We’ve got this.

Habit forming (Part 2)

Habit forming (Part 2)

Melissa

Remember this post, Habit forming, from last month where I was kicking myself for giving in to Monkey and letting him buy Doritos from the vending machine at work? I have an update.

As expected, he whined and moaned and even cried over my refusal to let him buy ‘Ritos every day. “Wanna come?” became the standard greeting for me each night.

He does this thing where he asks US the question he wants us to ask HIM so that when we repeat it he can say “OK!” and we then realize we’ve been totally outmaneuvered. It’s very clever and I half want to high five him and half want to high five myself…in the face.

ANYWAY.  Every night it became “Wanna come? ‘Ritos? 4 of ’em ((The number of quarters he needs to buy a bag, he is a very smart little punk!))? Want some please. Hongry, Money, hongry?” If we ignored it, tears. If we said no, tears. If we said when we get home you can have a snack, tears. It was such a pleasant way to end a day at work!

He always has Cheerios in the car but they have, after 8 years or so, lost their appeal for him so he never accepts that as a compromise. There are other snack foods, that don’t come out of vending machines, that he will accept though.

So I hatched a plan. I began saving the Trader Joe’s Baked Cheese Crunchies ((TJ version of Cheetos, we love them!)) that Eric was packing in my lunches ((Awww! I know.)). When I got in the truck, and he started his long list of questions and complaints, I would hand him the “cheetahs” and just tell him “I don’t have any Doritos.” That was it, nothing else.

And he totally went with it! It’s worked so well that Eric has been packing an extra little bag of something he’ll like in with my lunch so that I can eat mine and still have a snack for him ((Like I said, Awww!))!

We still have a minute or so, between when Eric stops the truck and I get in, where he’s primed for those Doritos but slowly, oh so slowly, we’re winning this one. At the very least, the tears have stopped which is really 100 times better. I totally prefer smiley, laughing Monkey to tearful, hongry Monkey!

Current hot snack item? Goldfish! The main reason for the Goldfish is, I’m much less likely to steal these during the day. Oops!

This is why we are doing it.

This is why we are doing it.

Melissa

I am, you may have noticed, an upbeat kind of person. I’m totally in love with my son and want everyone to love him just as much. That absolutely influences how I view, and consequently how I write about, our lives.

I try to share the good, the bad and the ugly…I try to go for balance but I acknowledge that the slant is more toward the good. Mostly because my life is slanted towards the good and partly because I’m just that damned determined to make it good.

So. It comes as a pretty rude wake up call when I find myself sitting in my office chair with an aching back. A back that is aching as a result of a very public wrestling match with my 71 lb, 4 foot something or other, 8 year old. He’s good, he’s so, so good and yet I needed him to do something last night that was way, way, way outside his comfort zone.

The more flustered I got, the worse the situation got…remember, I am still learning to listen too and sometimes I suck at it. Finally, I looked at my flushed faced, teary eyed cherub and glared at him. “TIME OUT. SIT.” He sank to the floor on his knees and it was over. He looked at me several times, with those big, big eyes that I love so much, and I just shook my head. Once he had regained some composure I gave him two options. He could stay in time out until Daddy was done or he could go into the voting booth with me. He chose the booth, we finished voting and he helped put my ballot into the voting machine-thingy and we went home.

It’s times like that when it is so very clear how much anxiety has a grip on him. I am in awe of the inner strength of this child who on a daily basis not only fights this battle but most often wins.

Today, we’re all better. He’s happy at school and though my back hurts it’s serving as a reminder that there is a beast who lives inside my son and makes his days so terribly hard. It’s serving as a reminder of why we are so focused on better treatments and ultimately a cure.

Please, please, please let us be on the placebo because such a sweet boy shouldn’t have to keep fighting this hard.