Friday, February 13, 2009

Saturday update

Hey guys! Friday was her best day yet. Glad to report that we have now gone over 24 hours without an episode. This is good news. She attended school for 3 hours. Came out looking like she could have stayed all day. Except she had PT at 1, which went well, and I took her to Tropical Getaway to do the foot detox thing. This was all new to me. I was told, and read that I needed to detox her as soon as possible. A friend had just told me about the foot detox, so off we went. They also have a spa detox, but I knew Steff would balk at that, and she did. The detox foot bath is on special for $10 a visit, lucky us, b/c she will going every other day for 10 days, I believe. The water was gross when she finished. I didn't read about it, but plan to next time. Kind of interesting! She gave up more blood today, against her wishes. She probably won't be one to donate to Red Cross. : ) She had a busy day, but napped in the car a bit, b/c she wanted to attend both BB games at the school. Dave and I took her up, still can't just turn her loose, but we are trying to give her some space. She keeps begging to go to a small party (is there such a thing?) tonight, I keep telling her we'll see what today brings. If she goes, it's only b/c her 3 good friends will be there ~ they've seen the episodes and know how to handle it. Besides, I trust that they will call us. But I'm not sold on it yet. Rest is her key to recovery. Hard to rest at a party. I feel like we are getting there. One thing I keep forgetting to mention, her walk has been cleaned up quite a bit. I believe tonight at the game she was walking like the girl I had 3 weeks ago. Oh yeah, and the mouth is back, can't forget that. : ) Now, the plan. She has an appointment with Dr. B (ob/gyn) on Tuesday. Dr. B has been talking to Dr. Pquite a bit, discussing Steff. This won't be a "regular" visit, lucky her! On Friday she has an appointment with Dr. M. On March 6, we have a follow up with Dr. P. On Monday, I will be calling Children's Hospital in St. Louis for an appointment. If Dr. B or Dr. M give me enough answers, I can always cancel if I feel comfortable with them. I'll play it by ear. I know I sent out an email, but if you are reading a testimonial on the side effects of Gardasil that is similar to Steff's, please print it, or copy and paste it to an email, so I can print it. I'm starting a folder of Gardasil information to carry to each visit with me. Don't tell me this is anxiety and stress, I know better. Thanks for all for all the information on Gardasil, I feel very informed. One more thing. The PT seems to think she has tardive dystonia, I still haven't educated myself much on dystonia. Moved my focus to the vaccine. I'll close on.... I think we are getting there. Looks like she might be doing that cheerleading dance for Senior Night. I'm glad, b/c I paid for those dance skills!!! LOL

Still searching for contacts.Vaccine Watch: Gardasil Side-Effects?
Wednesday, I think
Hey Guys! Today was a better day yet. Steff went to school for 2 hours this morning and did very well. She maintained her walk even as we were leaving. She took a nap when she got home and woke up to go to PT. It went really well, Angie could tell that she had gotten stronger. She worked hard for 25 minutes, which probably was too long, b/c she was laying on her tummy relaxing when she went into a spell. Angie worked her muscles, so it was controlled. This was the one and only spell today. Angie knew she was fatigued and said she'll shorten the time for Friday. SHe and Steff also decided that we will play this relaxing of the muscle technique by ear. I'm sure the training that Angie has had is what makes her so good for STeff. That said, if she wants to just have the "spell" Angie said to let her. After PT she took another nap. I was glad, b/c these meds she's on kind of make her crabby. Things get on her nerves quickly. She gets an overwhelming feeling. She's had her benedryl and is getting ready for a good night's sleep.Now about my findings. I'm tired, so stay with me. I've read a lot of articles on side effects of Gardasil, some are very ugly. There are paralells with what is going on with Steff. It is certainly something I will mention to the Dr in St. Louis. I called to make an appointment today. Seems your DR has to get those last Office visit notes to the St. Louis office. Then they go over the notes, and decide which DR you will be seeing. So, it's a waiting game. But at least we have a good plan. Here's to hoping each day she improves! Have a good day!!! Robin

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