Thursday, October 22, 2009

31 for 21: A Ping Pong

Not much profound to say today. I am just more random than anything. I am very tired from this emotional roller coaster that got me absolutely nowhere - the one that I must start again next week. I get to go back to work today and probably get 50 million questions about where I was. I also had the joy of checking my voicemail and hearing a forwarded message from ANOTHER HELPING PROFESSIONAL where they used the r-word. That was nice (sarcastically said). There is always something. It gets draining sometimes because you feel like you are walking in place and getting nowhere.

Lately I feel like a ping pong - being bounced around - back and forth between highs and lows of this journey. Ok high - at least we found out what Quinn's dx is (IS), learn they think she has a good prognosis because of the late onset, DS, lack of regression of skills, and lack of clustering. Then low - sent away with no tx, please tell us if you notice any regression now (what, do you expect it in the next five days?), come back later "hopefully" we can do it again (hopefully?). I know they had to do what they had to do, but I was psychologically ready then and now I have to start over the process. Is this a sign of something? Or is it just the way it is?

Random thought - why is it that DS puts you at risk for things (like cancer, IS) and then actually helps your prognosis and how you respond to tx? This is puzzling. The extra chromosome hurts you and then helps you - like a ping pong - which direction is it? Hit one direction and then the other. You become sad about the DS, upset at the DS that it put your child at risk for these things, but then relieved about the DS because it helps you in so many ways. I can't figure it out. It isn't for figuring out I guess.

Since I didn't post a clip yesterday, I posted two today. The first is about the r-word and the second is a clip about a book I intend to read and has been sitting on my shelf forever - maybe Christmas break is the time to read it.



  1. Hi Karyn, This is Joyce. I noticed you looked at Ken's blog. He really tells it like it is, and sometimes I'm not sure if everyone wants to read the good, bad and ugly but he does it in such a way that I have learned so much from him. I find the way he is able to reveal his emotions intertwined with what is happening medically with Bennett to be extraordinary. Truthfully, I did not know a thing about IS until I found his blog. Once I did he has other families linked on there too. I guess my summary would be frustration. Lots of frustration of what you have already experienced ready to start the medication but now Quinn can't because of the cold. I sure am thinking about you as you travel this new journey.

  2. Hi. I saw your comment on Ken's blog (Blogzilly). My daughter was dx with IS almost 3.5 years ago. I just want to say that if you need ANYTHING at all, I am here for you. I know how difficult it can be.

    Just wondering if anyone suggested Vigabatrin. Vig and ACTH are both front line meds for IS. You can hop over to Jen's blog ( to read a success story on Vig. Her son was older when he was dx with IS and she just didn't want to go the ACTH route. Sophie has been on both ACTH and Vig. I don't believe you have to wait to start Vig because it does not compromise your immune system.

    Quinn will be in my thoughts and I hope the seizures get under control quickly. Do you mind if I link you on my blog?