Yep, the child has to be the one making the wish. But they know that she has a limited vocabulary and they said they have ways to have them ask for their wish. I dont know if it is pointing at pictures or what.
I dont mind telling our story. Any of it. It is a therapy for me to get it out and the more people who hear about Tuberous Sclerosis the more people who could help find a cure!
When we left the neurosurgeons office I was quiet and DH asked if I was okay. I just said I was scared now because I wanted this to be a miracle. Then he said "you have great intuition, do you still want to go through with this?". I still have no doubts about the surgery. We really dont have a choice because medications arent working.
I have been pushy all along :lol If I hadnt of pushed when she was 6 months old she would have had some severe mental disabilities due to a rare nasty seizure type she had. So dont worry about that. I realized a long time ago that no one is going to advocate for my child except for me.
Wow!!! youre an amazing parent.
I am wishing for the best for Wednesday. I have to get more educated with TS. Well actually, I am through your story.
edit: sorry, i know some of that couldve been in just a pm too. ^
edit: Maybe you can have them holding pictures of what they want? Having them in their hands before the MAW come in??
Thanks for the update and don't ever feel bad about being pushy! You're just being a great parent. Keep up the good work and best of wishes.
"I'd rather be with an animal." "Those that can be trusted can change their mind." "The in between is mine." "If I don't lose control, explore and not explode, a preternatural other plane with the power to maintain." "Yeh this is living." "Life is what you make it."
We just got the call. Cassidy will have her first surgery on October 1st and her second surgery on October 8th.
Cassidy and I will be coming to Cincy on the 26th of September. She will be admitted on the 27th for pulmonary testing and her grid placement will be at 1245p on Monday. She will have the grids for 7 days. Hopefully only 1 ICU night and then monitoring for the next 6 when they will go back in and remove the grid and do the resection.
If you pray, pray, to whomever it is that is your God. If you dont pray, the power of positive thinking is an amazing force and I would appreciate anything we can get for my little girl.
My mom will be staying here with Kiley. This will also be hard on Kiley. Not only being away from her parents for 3 weeks but also worrying about her sister. Think of her as often as you do us.
www.caringbridge.org/visit/cassidyconway
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
If you pray, pray, to whomever it is that is your God. If you dont pray, the power of positive thinking is an amazing force and I would appreciate anything we can get for my little girl.
My mom will be staying here with Kiley. This will also be hard on Kiley. Not only being away from her parents for 3 weeks but also worrying about her sister. Think of her as often as you do us.
Will do.
thanks again for the update.
thinkin all day of her today....hoping MAW goes well!!!
Now that I have a daughter I can totally empathize. That must be scary as hell. I love my daughter so much and that must be so hard to go through. I was just complaining in another thread about how hard my life is right now, but I recognized that at least we all have our health. I thank God for our health, and I'm thakful that you are feeling that blissful feeling of weight being lifted off of your chest. RIGHT ON! CONGRATS!
We just got the call. Cassidy will have her first surgery on October 1st and her second surgery on October 8th.
Cassidy and I will be coming to Cincy on the 26th of September. She will be admitted on the 27th for pulmonary testing and her grid placement will be at 1245p on Monday. She will have the grids for 7 days. Hopefully only 1 ICU night and then monitoring for the next 6 when they will go back in and remove the grid and do the resection.
If you pray, pray, to whomever it is that is your God. If you dont pray, the power of positive thinking is an amazing force and I would appreciate anything we can get for my little girl.
My mom will be staying here with Kiley. This will also be hard on Kiley. Not only being away from her parents for 3 weeks but also worrying about her sister. Think of her as often as you do us.
I'm wishing the best for all of you and sending good vibes.
Thanks for sharing this, and voicing your opinions/concerns, it will def help to create more awareness, and this will help anyone who is in this or similar situation.
I hope it works out for her. Depending on the operation there could be some serious side-effects. It seems like a pretty common "rare" disease 1:12,500. Hopefully Community TSC discovers some good treatment.
I necessarily have the passion for writing this, and you have the passion for condemning me; both of us are equally fools, equally the toys of destiny. Your nature is to do harm, mine is to love truth, and to make it public in spite of you. - Voltaire
I hope it works out for her. Depending on the operation there could be some serious side-effects. It seems like a pretty common "rare" disease 1:12,500. Hopefully Community TSC discovers some good treatment.
Your right it is actually a very common "rare" disease. I supposed instead of rare it should say a common disease nobody has ever heard of. More people have TSC than Lou Gehrigs Disease or Cystic Fibrosis.
Thanks for reading about the disease. Thats the thing that I like to hear about most! Awareness always leads to more answers.
www.caringbridge.org/visit/cassidyconway
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
Your right it is actually a very common "rare" disease. I supposed instead of rare it should say a common disease nobody has ever heard of. More people have TSC than Lou Gehrigs Disease or Cystic Fibrosis.
Thanks for reading about the disease. Thats the thing that I like to hear about most! Awareness always leads to more answers.
I like to learn about this kind of stuff. Knowledge is power. Or at least it's understanding.
I necessarily have the passion for writing this, and you have the passion for condemning me; both of us are equally fools, equally the toys of destiny. Your nature is to do harm, mine is to love truth, and to make it public in spite of you. - Voltaire
We didnt have the best day today. Cassidy seizures are getting longer again :sigh Which means that she is breaking through on her medication again.
When we started her on this med back in May she was having up to 20 seizures a day and they could last up to 15 minutes. Since she has been on it her seizures have been down to 5 a day and lasting 30 seconds or less. A few weeks ago she started having 10 a day so we increased her dosage but I think she is as high as she can get. She is still at 5 a day but they are pushing 5 minutes or more.
She had one tonight and then went to sleep, which isnt unusual. What was unusual was that she slept for almost 3 hours and it literally took us an hour to wake her up. I eventually just sat her at the table in a chair because sitting her up, tickling her etc etc etc wasnt working.
www.caringbridge.org/visit/cassidyconway
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
She is so adorable Ya know, it is so unfair for a young child to go through something like this...that God fellow has an awfully strange sense of humor
0
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Surfing The far side of THE Sombrero Galaxy Posts: 18,212
I'll pray for her that ALL goes well.
Peace
*We CAN bomb the World to pieces, but we CAN'T bomb it into PEACE*...Michael Franti
*MUSIC IS the expression of EMOTION.....and that POLITICS IS merely the DECOY of PERCEPTION*
.....song_Music & Politics....Michael Franti
*The scientists of today think deeply instead of clearly. One must be sane to think clearly, but one can think deeply and be quite INSANE*....Nikola Tesla(a man who shaped our world of electricity with his futuristic inventions)
OMG don't aplogize for not being here...don't ever do that hun.
Your daughter and your family are WAY WAY more important than any of us or this board. You take care of you and your family first.
I'm happy to hear things are going well with your little one. I checked out your link...she is a cutie and such a brave little girl. I will keep her in my thoughts. Best of luck and I hope they can get rid of her seizures.
"Rock and roll is something that can't be quantified, sometimes it's not even something you hear, but FEEL!" - Bob Lefsetz
Comments
I am wishing for the best for Wednesday. I have to get more educated with TS. Well actually, I am through your story.
edit: sorry, i know some of that couldve been in just a pm too. ^
edit: Maybe you can have them holding pictures of what they want? Having them in their hands before the MAW come in??
moms always know best!
~~~~~~~~~~~~~~~~~~~~
I'm a number that doesn't count
~~~~~~~~~~~~~~~~~~~
the nothing ventured - the nothing feigned
Cassidy and I will be coming to Cincy on the 26th of September. She will be admitted on the 27th for pulmonary testing and her grid placement will be at 1245p on Monday. She will have the grids for 7 days. Hopefully only 1 ICU night and then monitoring for the next 6 when they will go back in and remove the grid and do the resection.
If you pray, pray, to whomever it is that is your God. If you dont pray, the power of positive thinking is an amazing force and I would appreciate anything we can get for my little girl.
My mom will be staying here with Kiley. This will also be hard on Kiley. Not only being away from her parents for 3 weeks but also worrying about her sister. Think of her as often as you do us.
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
Best wishes and prayers for Cassidy and the rest of your family.
Jason
Absolutely.
thanks again for the update.
thinkin all day of her today....hoping MAW goes well!!!
I'm wishing the best for all of you and sending good vibes.
Thanks for sharing this, and voicing your opinions/concerns, it will def help to create more awareness, and this will help anyone who is in this or similar situation.
Your right it is actually a very common "rare" disease. I supposed instead of rare it should say a common disease nobody has ever heard of. More people have TSC than Lou Gehrigs Disease or Cystic Fibrosis.
Thanks for reading about the disease. Thats the thing that I like to hear about most! Awareness always leads to more answers.
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
I like to learn about this kind of stuff. Knowledge is power. Or at least it's understanding.
I hope there are laughs & love.
Where I'm not ugly and you're lookin' at me
When we started her on this med back in May she was having up to 20 seizures a day and they could last up to 15 minutes. Since she has been on it her seizures have been down to 5 a day and lasting 30 seconds or less. A few weeks ago she started having 10 a day so we increased her dosage but I think she is as high as she can get. She is still at 5 a day but they are pushing 5 minutes or more.
She had one tonight and then went to sleep, which isnt unusual. What was unusual was that she slept for almost 3 hours and it literally took us an hour to wake her up. I eventually just sat her at the table in a chair because sitting her up, tickling her etc etc etc wasnt working.
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
Sorry I have been AWOL just a little distracted.
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
Peace
*MUSIC IS the expression of EMOTION.....and that POLITICS IS merely the DECOY of PERCEPTION*
.....song_Music & Politics....Michael Franti
*The scientists of today think deeply instead of clearly. One must be sane to think clearly, but one can think deeply and be quite INSANE*....Nikola Tesla(a man who shaped our world of electricity with his futuristic inventions)
we love you cassidy.
what a beautiful child...
she looks like an angel.
07 8/5 Lolla 8/2 VIC
06 7/22,23 Gorge 7/20 Ptl
04 10/8 VFC Kissimmee
03 4/11 WPB, 4/12 HOB Orlando, 7/8,9 MSG
00 8/24 Jones Bch 8/9,10 WPB
1998 9/22,23 WPB 1996 10/7 Ft Laud 1994 3/28 Miami
OMG don't aplogize for not being here...don't ever do that hun.
Your daughter and your family are WAY WAY more important than any of us or this board. You take care of you and your family first.
I'm happy to hear things are going well with your little one. I checked out your link...she is a cutie and such a brave little girl. I will keep her in my thoughts. Best of luck and I hope they can get rid of her seizures.
I vote for making it a sticky
xoxoxo