After seeing the neuro

    • Anonymous
      September 19, 2007 at 7:39 am

      My dr told me yesterday after the exam that he “couldnt tell me I am any better”. REally ?

      I am going to a physio therapist to talk about AFO’s on BOTH legs. The right is now plenty weak enough for the need.

      He is advising another round of five day treatment of the IVIG and then once per mo for 6 mos. While I didnt get better on it before, I didnt get worse. I got sick, achey and a real pretty rash…but I didnt get weaker.

      Other option would be steroids again and I do NOT want to go there. They didnt prove to help either.

      Because I am so busy right now, I cant do five days in a row and will get it done sometime within the next four weeks and return to him.

      for what, I dont know.

      He said another option is Mayo as they have new meds and such but that he isnt comfortable prescribing them. I got the impression to wait on the Mayo thing. Which, I cant rush off anyway. My life doesnt allow it.

      I’m grouchy today. My mom is still in the hosp with pnumonia but the only good thing about that is she is in a different hospital that is actually treating her like a sick person.

      We are having her fund raiser/benefit this weekend and it’s been chaotic going around begging for donations to local vendors. I must say, the majority of the restaruants and generous and I’ve gotten alot of gift certs.
      My sister that is never around is suppose to be in charge of all the spagetti…we’re having a spagetti feed…
      I just dont feel comfortable about her coming thru. She’s out of town again and wont be back till Friday…ONE day before the event.

      have a good day.


    • Anonymous
      September 19, 2007 at 10:49 am

      Dear Stacey

      Gosh, you are having a tough time! I’ve always said that i think things would be so much easier if a few of us lived nearer to each other – at least to be there for one another and help out in some way. No wonder you are grouchy, dont blame you there my dear.

      One thing that may help a leeetle with the stress (even though I know its not much) is that they hospital is treating your mom as if she is sick this time – as I said, not that much ease off the stress, but some small little flicker in your corner.

      Now I know this sounds ummmm …. dont know what word to say ….. self serving perhaps, but …. I cant wait for you to get those AFO’s, and girl, you had better wear them EVERYWHERE 😀 , because maybe, just maybe people will realize what you are going though and treat you the way they should have been doing a long time ago. You should get your little one to put a hand print on one of them so that you can always look down and smile when you need to, and he will feel part of everything too:) .

      thinking of you, and I know its easier said than done, but please, please let your sister do what she is supposed to do, she needs to take on something as well. Please dont be upset for me saying that, and I dont want the fundraiser to be a flop,(and once again, im not in your situation, and I know I would be exactly the same as you if I was) but sometimes the tough love approach works wonders …. notice I said … sometimes 😉 .

    • Anonymous
      September 19, 2007 at 12:23 pm

      Thanks Ali and I LOVE the idea about the handprint. :p

    • Anonymous
      September 19, 2007 at 3:54 pm



      I’m so glad that you are going for the AFO’s…they will really help you. My
      right foot is also the bad one. You will feel much more secure in walking.
      Don’t forget to wear knee-hi’s with them – they prevent the velcro from
      rubbing on your shins.

      Good luck with the fundraiser…I’m sure it will be a success!!!

      Miami Girl