Latest Dr's Report on Sam...

Sam's Rheumatologist called tonight with the MRI results. They saw a lot of increased edema in the muscles which is what they expected to see. There is no way at this point to tell what muscle is recoverable and what muscle is not recoverable. The doctor rates the severity of Sam's disease as an 8.5 on a 1-10 scale. Severity does not necessarily suggest anything about the long term prognosis or about the liklihood of a good response to treatment. She also said while some kids respond quickly to treatment, we shouldn't get too discouraged if we don't see signs of improvement in Sam for a couple of months. Charity asked her if he would be able to play sports in highschool. She said, "He won't be an olympic athlete" which seems to me to suggest that she anticipates long term, unrecoverable damage of the sort that would cause some permanent physical limitations. (So I guess your records are safe for now, Phelps).

Every new bit of news we recieve - each test result and phone call- seems to dim the lights a little lower and take a bit more wind out of my sails.

__________________

Ye fearful saints, fresh courage take,
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.

His purposes will ripen fast,
Unfolding every hour;
The bud may have a bitter taste,
But sweet will be the flower.

Blind unbelief is sure to err,
And scan his work in vain;
God is His own interpreter,
And He will make it plain.

-from William Cowper's God Moves in a Mysterious Way

from the mouths of babes...

One of the side effects of Sam's medication is pretty extreme moodiness. Think of a four year old with roid-rage. That's basically what he's going through. He's happy, sweet, loving, angry, sad, grumpy and happy again- all in a matter of minutes. As hard as it is to watch him go through the emotional turmoil all this brings, there have been some good quotes which have come out of it. These are all things Sam has said in just the last few days, each of which I find interesting for various reasons. I'll do them in order of my favorite:

5. Mommy, I love that baby in your belly.
4. Mommy, I love you just because there's a baby in your belly.

* These two quotes bring joy to our hearts! He really is such a sweet kid who has always gone out of his way to give affection. Already he loves his little sibling, and loves his mother for carrying the child. 

3. Can me and Jack punch each other?

* This question was asked in all seriousness and with complete calmness and sincerity. I had brought home the game Rock em Sock em Robots for the boys to play together- thinking it might help dispel some boyhood aggression. Jack & Sam were very impressed with the game. I mean, Robots that Punch each other until their heads pop off? Come on. That's Awesome. But Sam of course, (feeling grumpy at the time) wanted to know if he and his big brother could slug it out for real. At least he asked first. 

2. I want to be mean to somebody.

*This confession was offered up recently (I think it was at the dinner table). There was no context. No conflict. No yelling or crying. Just a calm, rational expression of his desire to inflict bodily harm on another human being. To which I confessed feeling the exact same desire and explained that's why daddy does Jiu Jitsu twice a week. Then I told him that if he wants, when he's older he can learn boxing, or wrestling or jiu-jitsu if he'd like. Because those are sports where it's okay to be "mean" to somebody. He was satisfied with that. (And as they say in my jiu jitsu gym after teaching a particularly painful maneuver- "It's not mean. It's jiu Jitsu.") 

1. I'm sad because of grown ups.

* This was at the hospital immediately after receiving medication in the most uncomfortable manner possible. (Think "going in the out door"). He burst into tears and was crying like his heart was broken. We were trying to figure out what was upsetting him, as it's not suppose to be a painful procedure. And he finally offered up between sobs "I'm sad because of grown ups!" Yes indeed, little buddy. 

[Also, Sam gave me a couple of good ideas for the working title of my memoirs, which are to be published posthumously. "Sad Because of Grown Ups" or "Can We Punch Each Other?" Both of these will work,  I suppose. Maybe I'll let my Estate determine the final title.]