skipper66
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  • Hi Skipper66. So far Tom is doing fine, he has been on daily shots for two weeks now. No side effects. He sleeps fine, he did think maybe he was taking longer naps but I don't think so. Oh how I hope this slows things down even more. I am so grateful that he can still do so much. I googled what Acthar costs on the open market. $28,000 PER VIAL! And we have three in our refrigerator! We discussed this with our study manager, she said it was true, they don't like to mention it. Sure glad he's on it for FREE!
    Thank you. Means a lot. I know i will be ok but got the sacrament of the anointing of the sick last night and holy communion. That soothed me. My family called the priest to come at two pm - but i had been sent off site for nuclear test - that priest sat in my room until 7:30pm waiting for me. That blew me away Kim. I don't know too many elderly priests who would do that.
    Hey there Kim!

    No extra vitamins for me. Now I'm 100% formula, but really didn't take them prior to that either.

    I just use Nuedexta for EL, baclofen and tizanidine for spasticity, and some guifenisen (sp? ) for thinning mucus.
    I am so glad you and your family are ok. I was worried. Thank you for the well wishes.
    All is well, just trying to figure out what to do now that my trial is over. How is your dad doing?
    Kim, you are a marvel. Thanks so much for thinking of me. Picking up the pieces is so hard. I would do anything for just one more day.

    I hope you and your family are doing well. Sending strength to you and your dad.. Shelly
    Thank you. One thing I have learned... Rule #1. Life isn't fair. Rule #2. No one can change rule #1. We still believe we are fortunate. So many face just as much and more without means. I think of them often.
    I know sometimes I am too frank. I'm working on it. I had to work on becoming a patient man (which I wasn't) I am now, everyday I pray for more, then I dig a little deeper for more. Ann is doing "ok" but there are times...
    It just snowed for about 5min! Brrr...here comes winter :) just listening to music and reading posts. Quiet saturday. It is nice. How are your twins doing with their new driving skills?
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