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24 Jan 2010 07:00
  • CindyL
  • CindyL
That's exactly what Joan said in her PM! Thanks, Sandi.

Hey, Sandi, like Tortie said, What's going on with my replies? I noticed yesterday when I made that post that it posted 2x's. Now I see 3 replies!!!!! :unsure:
Category: Social Chat
24 Jan 2010 07:00
  • CindyL
  • CindyL
That's exactly what Joan said in her PM! Thanks, Sandi.

Hey, Sandi, like Tortie said, What's going on with my replies? I noticed yesterday when I made that post that it posted 2x's. Now I see 3 replies!!!!! :unsure:
Category: Social Chat
24 Jan 2010 07:05
  • CindyL
  • CindyL
Hi
How did I manage to get 2 posts of my replies? :huh:
Category: Social Chat
24 Jan 2010 07:53
  • Caroline109
  • Caroline109
Thanks. I'll try that later. I'm going to have to go copy and paste the info. from the old side of the message board.
Category: Social Chat
24 Jan 2010 08:30
  • jgleepa
  • jgleepa
24 Jan 2010 10:01
  • tacmom
  • tacmom
You are right "What if" it had been Caitlin that had gotten the concussion! I would have freaked out, definitely!! One thing that is much safer about our gym is that we always, always have a soft bouncy floor (not mats)...like the ones the gymnasts use to do their floor routine. It is actually a law now in Texas that all high schools must have a mat out when doing tumbling or stunts at all times, but the school that the other girl got her concussion at, was at a private school so I'm not sure the same laws apply. Caitlin's team mostly has high schoolers so if they are basing her, she is so easy for them to lift.

They WON first place yesterday at the competition AND they were the Grand Champions! We were so shocked and so excited!! It was our first time ever for the gym (we've been there since it opened because our friends own it) in 6 years that they got this title! Not only were we short a girl due to her concussion, but another one of our guys (we have two high school boys) was hurt with a dislocated shoulder so he only did the dance part and had help with some of the other girls when he had to lift up anyone. He sat down low in the back or off to the side when there was any tumbling done.

I am glad to hear that most people don't have a bad reaction to Rituxan. I truly hope that will be the case for Caitlin. I am sure we will find out tomorrow or Tuesday when Caitlin's first infusion will be. I talked to my mom, and she doesn't understand why they are doing so many treatments in such a short period of time. She thinks the hospital is just trying to make money off of me! It is so hard to explain ITP to other people when they keep saying "but she looks just fine, I don't see anything wrong with her"! I had my team leader call the dr Friday to find out what Caitlin's count was, and for the first time...she keeps telling me how bad she feels because she got to hear the nurse herself say "the count doesn't look good" "I just don't know what to say and I'm so sorry because I know how badly she wants to compete". (They have no idea that she did last week's and this week's competition and I'm too scared to tell them because then they'd think I'm a bad mom.) And maybe I am...but at least I know Caitlin is sooo happy right now!

She did have ALOT of joint pain last night with her knee and her shoulder. I asked her if she did something during the competition and she said no. I think I remember reading that coming off Prednisone can cause joint pain so I told her it was just from the medicine. She had a 10 minute nose bleed yesterday morning but it wasn't as bad as some of them have been, whew! It is still so hard to tell what is an ITP nosebleed and what is a normal nosebleed!
24 Jan 2010 11:52
  • Sandi
  • Sandi
I don't think I can move them. If I did, your replies would just be a copy and paste and it would look like I posted it.
Category: Social Chat
24 Jan 2010 12:34
  • Sandi
  • Sandi
Update! I received an e-mail from Steve's brother this morning. He forwarded an e-mail that Steve's wife sent to family and friends. Here it is:


Hello everyone. After a long wait, I have some good news to share. Steve woke up this morning. I was sitting in the chair next to his bed reading, and I looked over and he was staring at me. It was a shock, obviously -- no bells, no alarms, just open eyes for the first time in a long time. That's the good news (and it's great good news). The not so good news is that he can't speak. He responds to commands by blinking his eyes, so we know, as the doctor said "that he's in there." But he can't (or at least he hasn't) speak, and he can't move his hands, arms or legs when we ask him to do that. We don't know what damage has happened -- they will now start to do a lot of tests to try to determine that. They will do an MRI very soon to see how the brain surgery has healed and to see if there is any blood remaining. His platelet count continues to be poor, and we are talking to his ITP specialists about other options. Please pray that he won't have more bleeding in his brain. I am so frustrated with his ITP. I know what Steve would say -- "hey, ITP is easy, try cancer if you want to feel sorry for yourself." For now, I guess, he's awake, it appears that he survived the surgery, he's breathing on his own, and for all of that I am very happy. Now we hope and pray that he hasn't lost his memories.
Category: Social Chat
24 Jan 2010 12:42
  • Melinda
  • Melinda's Avatar
Thank you for posting this Sandi. I am so thankful Steve is awake and I will continue to pray all is well!!
Category: Social Chat
24 Jan 2010 13:02
  • lucidawn
  • lucidawn
My son was on it for a little while, but took himself off without telling us recently. He said it makes him feel terrible, tired, like he's on cold medicine. He has also been complaining about his vision...didn't realize that was a side effect.

He's 16.5, btw.
24 Jan 2010 13:09
  • lucidawn
  • lucidawn
Congratulations to Caitlin! I'm glad they were able to change the routine for her so she could compete. She would have really been bummed to not be part of this victory. Let us know how the Rituxan goes. It was easy for Tim, though time consuming.
24 Jan 2010 13:12
  • CindyL
  • CindyL
I'm so glad to hear that Steve is awake and at least somewhat alert! I'll keep sending good thoughts and prayers to his family.

Thanks, Sandi!
Category: Social Chat
24 Jan 2010 14:16
  • CindyL
  • CindyL
I had my latest counts done today, and they are at 54! :cheer: The only down side to this count is that the last treatment I had was just 3 weeks ago. :( My next count is at the end of Feb. Hopefully there won't be much change!
24 Jan 2010 14:18
  • CindyL
  • CindyL
I had my latest counts done today, and they are at 54! :cheer: The only down side to this count is that the last treatment I had was just 3 weeks ago. :( My next count is at the end of Feb. Hopefully there won't be much change!
24 Jan 2010 14:22
  • tamar
  • tamar
That's great, Cindy. You get counts done on Sundays? It would be nice if we could do that here in the States.
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