Bizarre! How'd this entry get here? It used to be, and does belong, on page 2 or 3...

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I am exhausted. But did play drums for an hour, and guitar for an hour, this week.

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Dear All,

Thanks for following Dylan's illness. It means a lot to him. He's received mail from Fargo [North Dakota in the US] to England!

Either Thurs the 19th or Fri. the 20th, we were told he was having renal failure. After double checking the labs, an ultrasound was done and kidney specialist called in (Dr. Kim). Dylan was very tired a couple of those days understandably, and here and there, since. Dr. Kim said it was the contrast dyes used - which leeriness had been mentioned to the techs w/ the first scan weeks ago...

Other than this setback, he continues slowly progressing with lung improvement. His appetite is coming back (sigh of relief), at least some period during the day, if not at all 3 mealtimes.

This week was the first time an esitimated discharge was mentioned. It may happen early next week.

There was some stress (?) testing he was to do today, breathing exercises and etc; but after each attempt to inhale deeply was accompanied by coughing, he was told he's not ready to do this testing.

It will be something to see him put on the weight again; his wrists and forearms are looking pretty delicate. He is understandably feeble, weak, sometimes quite pale. But his spirits have been good when he's not being blasted by some symptom...

Gratefully yours,

Donna

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~July 24 Jokes~

Omigosh, tonight he had me in stitches. First, the child is quite tall (and now too skinny), with very dark, long-ish hair, and huge (but well shaped) feet. He's just so long, even in the hospital bed. So big and little, as it were. Dylan wears a smaller version of horn-rimmed glasses.

When he jokes, often it's in a true Minnesotan rythym: he takes time in speaking the words, and there are full pauses between phrases. There's a mild quality in the tone of voice, almost apologetic.

We were arguing about who was going to read the TV listings in the fast fading daylight, and during this exchange the Nurse came in, so I asked her "Where's the light?" Dylan always wants it darkened, and we've never had the light on! She turns a switch and all three of us jump from the florescent brutally bright.

I say, "try that switch..." and she nods at me, but Dylan says weakly, holding up a finger: "No: there is to be No Light In My Room...I will read the listing."

Then the nurse spies a wall scone right above my head and I say, "duh, how'd I miss that?"

I turned on the wall lamp and purused the list. Dylan held the nurse control switch in his hand and observed, while running fingertips over each section of the remote, while he spoke of it:

"There's Braille where the "Nurse" button is...

"And there's Braille where the "TV" button is."

He pauses til he sees me looking at him.

"But," he concludes, "there is no Braille for the "Light" button...because...the blind...don't...need the light....because...they can't see."

A special friend brought him a new stuffed puppy, which is small and sort of copper colored, very cute and cuddly. "You wanna know what I named my new dog?" Again, he pauses til he sees I'm looking at him.

"What?" I ask.

"Peanut Brittle."

That's the exact color of the dog.

Everytime a medication runs out, his IV monitor makes a loud BEEP. And continues BEEPing til the nurse comes in. But sometimes there a five point series of BEEPS, in two different tones. I don't think Dylan knows what that one is for (I sure don't). Tonight it began going off. After about the 4th series of BEEPS, Dylan slowly pushes the "Nurse" button.

"Can I help you?" she asks crisply via the intercom

Dylan speaks into the remote, in a serious, mild and bewildered voice: "I can't stop BEEPing..."

They call again. "I can't stop BEEPing," he repeats in a sort of helpless voice, yet wanting to get to the bottom of it.

Then two of them come in. They're unable to quiet the noise. "I can't stop BEEPing," Dylan explains, speaking to them, and into the Nurse remote at the same time. He pushes the Nurse button while they're in there, holding the remote up to his mouth: "I can't stop BEEPing.."

I suggested this eve that we take a walk and he was amaible to the suggestion, even seemed eager to. So I pushed the IV monitor and we made our way around 1/2 the floor, about a block in all.

As we ambled past patient rooms I asked, "have you talked to any of the other children here...?" and realized how dumb the question was before it came out.

"No... there's not much fra..ternization here... it's not like we're bored... and so we knock at each other's rooms, to play Scrabble."

(We both started cracking up) "No," I agreed, stifling a giggle, "y'all are too sick."