Thanks for sharing with us

May 12, 2004

Thank you all for sharing in our good news regarding Max and not

longer needing ST. Just like weaning him off some of his meds, it

is one less thing to think about.

In general, Max is doing better. The doctor was right - time has

eased the pains in his stomach/abdomen. We are not going to let

anyone fool around with the button for a long time now! We are

fortunate that Zofran works to help the nausea he still feels at

times and the pains are bearable enough that Max can get through the

episodes without distress. Unfortunately, he is getting sick with a

cold, so we will see what happens. In the past it would lead to

some GI problems, so I am not giving up the pump yet. I'd hate to

send it back tomorrow and then need it again next week.

When we saw Dr. H. last week, she arranged for us to get all of

Max's meds through mail order pharmacy. I called them yesterday to

see what is going on - why we have not gotten them yet - and they

told me it will be at least another week until delivery. Yuck.

Then they asked me to pay for the co-pay over the phone. Are you

ready for this? It was $500!!!! I did not realize that we were

paying this much every single month at our local pharmacy. Now, at

least, we will pay this only every three months. Thank you, Dr. H.,

for setting this up for us.

For anyone who has read this far and is worried about Dr. H.'s move,

remember she has most of the email addresses for you. She intends

to contact, via email, anyone who does not have the correct

paperwork on file. Don't panic. And I, too, have tried to reach

Yadira at Mt. Sinai, to no avail. Just give it time. It will all

work out.

Jodi Z.

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