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Posts Tagged ‘Boston Children’s Hospital’

There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

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Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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