Danilo's Page

Danilo has a cough and a cold today. He is walking steadier and steadier every day now. He's got physical therapy today so I'll be interested in what his therapist says about his progess.

The microscans are in limbo still. Beverly doesn't have the request so I emailed Dr. M. She actually emails me back very quickly most of the time. It's really nice.

We'll probably get our own blood pressure machine in case anyone needs to use it ....

Yeah, I would agree he is much more easy-going emotionally. I'm not sure if it is the ACTH or if he is just so happy that he can walk around. Last night I asked him to come and sit with me for a few minutes, but he said he was busy. He's got much more important things to do than sit around with me. His appetite and his sleeping are about the same as always I think.

I just visited Danilo on his 4th day on ACTH. On a scale of 1 to 10, I'd say before treatment, Danilo's ataxia had been fluctuating between 8 and 10. Today I'd say it was a 5. His ability to walk and stand unassisted is markedly improved. I didn't see a huge change in the intention tremors, but Maria seemed to think he was less shaky. She indicated that he seemed more easy-going emotionally, was sleeping better, and had a better appetite. It couldn't escape my notice on the trip to Illinois that when Danilo sleeps lying down, he snores up a storm. I think Maria said that that too was better, but the Spanish/English communication isn't the best. Oge, can you comment on his sleeping, appetite, and snoring? I notice the excessive drooling continues.

He screams a bit and fights, but when the needle comes out he holds the alcohol swab himself, gives me and the nurse a stern look and then walks off to play. And he is making up for a year and half of not walking without assistance. He will not sit still. He has to get up and walk around. Still wobbly, but getting better. I have noticed that he is a bit more inquisitive too and people are able to understand him a little more. I'm not doing as much translation as I used to.

So far, so good.

(Mun, the microscans are in Beverly limbo. I have to call her ...)

The ACTH and syringes arrived!


(Hey, Oge: I fogot to ask you - Didn't Dr. Mitchell say she was going to do microscans to look for a neuroblastoma? Is that scheduled? Or in insurance-limbo?)

Actually, the nurse will probably come Saturday.

The meds are coming via Fedex from Florida on Friday. I'm hoping to get the nurse to come on Monday.

They just approved the medicine. I have to call this insurance lady back after her lunch and find out if they are going to deliver it or if I have to pick it up or what.

Today, insurance authorized the home nurse visit, but we're still waiting for the auth for the ACTH. Hopefully tomorrow ....

Dr. Mitchell saw the opsoclonus and the gears are in motion to start Danilo on ACTH asap. Depending on the insurance, it could start as soon as tomorrow or Monday. Of course there will be all kinds of weird side effects that go with that, but I am so relieved that he will start treatment. Dr. Mitchell also wants to do the whole body scan again to look for a neuroblastoma.

I am elated, but I am pissed off at all the doctors who were unable or unwilling to see the opsoclonus which was so visible when this all began.