Update on Sam

Sam has now had three weeks of treatment and so far he seems to be responding ok. Before the treatment began Sam would not walk up the stairs himself at all. He would either wait to be carried or would just not go up to his room. Since his treatment began we've been keeping track of the number of times he goes up the stairs on his own and at his own initiation. That number has been steadily increasing week by week, which is encouraging. Even now, when he does climb the stairs, it is a whole body effort for him. Both hands holding the railing and pulling as hard as he can while his legs do all they can do to lift his body. And I think they really don't know if the perceived improvement is due to increased energy level or due to the medication actually minimizing the affects of the active disease on his muscles. Still a very frustrating process with so many questions and so few answers. But it is something. Something is happening. And that's good.

kickin' it old school

Hope. Sort of.

Twenty-one year old Cejudo wins gold.

"I was born and raised in the U.S. and I don't forget that. As much as I love Mexican heritage, I'm American first and foremost. The U.S. is a land of opportunity and you choose your own path." - Henry Cejudo

This son of Mexican illegals won the gold for the USA in men's freestyle, today. He's an amazing athlete with an amazing story. Wednesday brings two more opportunities for the US to medal in freestyle wrestling when Doug Schwab (former Iowa Hawkeye) and Ben Askren (former Missouri Tiger) compete in Beijing. Schwabb and Askren present an interesting study of stylistic differences in thier sport.

Schwab is relatively typical of Brands/Gable/Hawkeye trained wrestlers, who tend to prefer a straight ahead, aggressive (nearly abusive) style of competing. Europeans hate it. I love it. Askren on the otherhand is known for his unorthdox approach to the sport. He does things you aren't suppose to do, and violates fundamental principles. One might think that Askren's style is that of a natural whose athleticism rewards scrambling and improvisation. This however is not the case. Askren consciously developed this radical style after entering college and realizing that his modest athleticism left him virtually unable to keep up at the division one level of NCAA wrestling. Necessity is the mother of invention, so Askren reinvented himself leading to a couple of NCAA titles and a spot on the Olympic team. If you catch any of his matches on tv or the internet, expect the unexpected.

Does China Permit Freedom of Religion?

Dear International Olympic Committee,

Now that Michael Phelps has achieved the unbelievable, winning a buh-zillion gold medals and shattering multiple world records, it would seem he has no where else to go in the sport of swimming.  There's no one else to beat.  No more records to shatter, for this guy and he's only 23.  So here's what I propose.  If Phelps wants to keep competing in swimming, that's fine but there are some stipulations which now must be imposed.  

1.  First, no more super-fast, high-tech, rubberized swimming suit.  From now on he competes in overalls, snow boots and a carhart jacket.  

2.  Second, enough with the World Records.  From now on he's only allowed to set Other-World records.  As soon as NASA confirms the presence of liquid water on Mars, our first priority should be to get Phelps to the red planet by any means necessary.  

3.  Third, he has nothing to prove by continuing to race people.  We all know Phelps is faster than all other people.  Now the other lanes of the pool will be occupied by sharks.   (Chum may be utilized according to the discretion of the host nation).  

4.  Fourth, it may be that Phelps has simply exhausted the limitations of "water" as an athletic medium.  Should the previous three stipulations fail to provide him with a competitive challenge, Michael will henceforth be required to compete in swimming pools filled with alternative substances.  For instance foam packaging pellets, dead batteries, or quarters.  

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.]

Three in a Million

Last night I got out the kids' expandable, spring loaded tunnel fort and set it up on the dining room table.  It's blue.  And looks like an owl.  Which is hard to imagine if you've not actually seen it, because owls are neither blue nor tunnel shaped, and are (almost never) spring loaded.   Picking up our , blue-eyed boy I slid him head first into the fabric cylinder.  Legs straight, arms at sides, body still but eyes darting.  He listened to the clunks, bonks, and bleeps fuzzing out of the speakers of our emac.  At four or five years old, it's an ancient machine when measured by the standards of an industry that survives by way of planned obsolescence.  We hope it survives a little longer.  It holds all of our photos.  Which are really just 1's and 0's.  But to us they are memories.  It's always hard to imagine that it's just 1's and 0's when you're looking at the photos.  There's one of Charity holding our newborn daughter on her first day home from the hospital.  They both look so tired.  Being born, giving birth.  Such hard work.  

For over a year our middle child Sam has exhibited a strange rash on his fingers, knees, elbows, toes and face.  Multiple trips to our pediatrician yielded little in the way of a solution.  Initial diagnosis was eczema.  The treatments didn't seem to help.  Soon thereafter it seems Sam began to grow weaker physically.  It wasn't too apparent at first, but in hindsight we can see it. Eventually the problem became undeniable, especially when we observed him playing with other children his own age, and as we watched his little sister grow and develop and play.  At first the doctor suspected muscular dystrophy.  We were elated when the test results came back negative.  

Now it seems we have a diagnosis.  Juvenile Dermatomyostis.  It is a three in a million disease. The good news is that most children respond well to the treatments and the disease can usually be sent into remission.  Sometimes it never comes back.  It is a very serious disease however.  In the 1960's the mortality rate for JDM was 30%.  In the 1970's that rate dropped to 10% as better treatment strategies were developed.  Today the number is fortunately down around 1%.

"Almost never fatal"  It's one of those sentences that jumps off the page and grabs you round the neck.  It's good news, right?  It's good news that the disease your son has is "almost never" fatal.  1%.  That's one in a hundred.  How can you not be encouraged by odds like that?  Paint a penny blue.  Put it in a jar with 99 others.  Close your eyes and pick one.  Who wouldn't take those odds?  

After several seconds, I slid Sam out of the big, blue owl.  (No chords to cut this time).  We talked about it.  "Now that's sort of what it will be like.  We can practice again if you'd like.  And remember, Daddy will be right there beside you the whole time, ready for when you come out". So later today Charity and I are taking Sam back to the hospital for an MRI.  Because we're expecting again, Charity can't be in the room with him, so I'm going to do it.  I can't imagine having an MRI at just four-years old (old for a computer, young for a boy).  Hopefully our practice round last night on the dining room table will take the edge off of the fear.  I don't know how to calculate the odds on something like that.