Friday, March 21, 2008

Update on "A"

I know I haven't mentioned exactly what is going on with "A" yet, so here goes.....

She got along ok today. She is starting to have muscle aches in her stomach area from the movements involved in screaming out repeatedly, and her medicine makes her extremely weak. This coupled with the fact that it doesn’t seem to be doing a damn thing to help stop or slow her tics, leaves me wondering what the hell the point is for the meds. We’ll definitely be discussing other meds at her Dr. appt on Monday night.

Tonight she told me that she is afraid that she will be running out of her classroom too much, when she goes back to school on Monday because the tics come so frequently. It will get in the way of her education if she does that. But, imagine being an 11 yr old girl having to scream “love you” over and over at the top of your lungs while all of your peers are trying to learn. Sometimes it comes out so loud and abbreviated that it does just sound like a bark or something. She just moans after them sometimes because they knock the wind out of her. If that doesn't do her in, she'll surely die of embarrassment (ask any 11 yr old girl).

Today we went to the mall to buy Easter outfits for both girls. They got adorable sundresses at Pac Sun. "A" is comfortable enough to let the tics come out while in public but we both agree that it is because the people around her are strangers and she doesn’t give a damn what strangers think. I told her that if anyone stared at her to calmly say “It’s called Tourettes, go home and do some research”. Short and sweet, not rude, but to the point. She liked that and gave me a giggle.

Tonight we discussed how much better it is to shout Love ya than to say obscene words. She said “yeah, beep beep beep beep beeeep” We both laughed a lot at that. I’m glad that humor is still alive in this home. It helps A LOT!

Tomorrow we'll spend the day coloring Easter eggs, and Sunday we are going to Brunch with the whole fam damn-ily. It'll be a quiet, subdued day, so I am not sure how "A" will feel. We've decided to take 2 cars so she and I can leave if she wants to. Our strategy is to take frequent walks outside if she needs to let the tics out. It physically hurts her to keep them in, so I am a little nervous to let her try for too long.

Coincidentally, there was a great program on HBO last night called "I have Tourettes, but it doesn't have me". All 4 of us watched it as a family this morning and I burned copies on DVD to send to my older daughter and their father down in FL and to my Mom up in ME. It helped me to see other kids suffering from this disorder, yet succeeding at so many things. "A" said that it didn't help her much, but I think it did because tonight at bedtime she was talking to me about one of the boys who also had a vocal tic to deal with. I think it was good for her to identify with someone else and not feel so isolated. One of her biggest complaints this week was how lonely she felt even though she was never alone.

On a lighter subject, my big moment of the day today, was buttoning and zipping a wicked cute pair of shorts from the Juniors department. I’ve taken a nose dive on the WW front this week. We’ve eaten Chinese, Friendly’s Ice Cream sundaes, Dairy Queen, Nachos and Cheese, etc. And GUESS WHAT? I’ve lost freaking 4 pounds!! I think I needed to jump start my metabolism again. I am hoping it stays there so I can weigh in at that weight. That would mean that I finally made it down to the 50 pound mark.

Please continue to think good thoughts for us and pray for us if that is your thing....


  1. I watched that show the other night too! I wish I would have TIVO'd it because I was shocked to learn how many people have Tourette's. I think my girls could benefit by watching it. I have an 11 year old as well, and can't imagine how difficult this must be for A (and you).

    I had no idea about your little one, but good thoughts and prayers in your direction. It sounds like she is quite the little lady, and of course she has one heck of a mom. :) Hopefully you guys can get those meds to working and she can get some energy back as well.

    Oh yeah and....WOOOOFREAKINHOOOOO congrats on the weight loss!!! That is fantastic news!!!!!!

  2. I have an internet group friend who has a son with Tourette's...she's very involved in educating people on it. I do believe she is in New Hampshire.
    Good thoughts out to you and yours.
    and, on your weight loss? GOOD JOB!!