Bump this up.....still thinking about you and your beautiful daughter.
oxc
~*LIVE~LOVE~LAUGH*~
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Thanks for the bump! Still havent heard from the neurosurgeon. I am calling on Monday.
Isnt it some kind of torture to tell a parent we want to do brain surgery on your kid but we cant tell you when yet?
I'd think every single moment is torture....so damn scary and happy at the same time. I wish you peace of heart and lots of great vibes coming your way!
oxc
~*LIVE~LOVE~LAUGH*~
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Thanks for the update.....may the process begin and go smoothly.
oxc
~*LIVE~LOVE~LAUGH*~
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Best of luck to you and your daughter. If there is such a thing as a God, he/she will be paying close attention to your daughters procedure, making sure all goes as planned
I didn't see this thread until now. Lots of love to you, your daughter, and your family. I can't even imagine going through something like this with my kids. You're a very strong person, your girls are so lucky to have you. Best of luck to you on Thursday, and please keep us posted.
"Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity." ~ MLK, 1963
lots of love and prayers to you and your family! i'm an identical twin, so i can imagine how hard this must be for your daughters. there really is a connection between twins, i'm not sure how to explain it. maybe its from sharing a womb!!
I have posted on here a couple of times about one of my twin girls struggle with Tuberous Sclerosis.
We got the call today that she is a surgical candidate.
The epileptologists secretary called me at 9a this morning to tell me that Cassidy was being presented at the surgical committee today.
Dr. Lee called me at 2p to tell me that he is very optimistic that they can improve the quality of her life via brain resection/epilepsy surgery.
I cried. I cant tell you what a weight lifting off my chest is. Its like they are finally doing something other than trying different drug combos.
They still have exactly pinpointed the area that is causing the seizures. They know its the left posterior lobe which is where the motor strip is located. So when they do the grid placement she will actually have almost her whole left side of her brain gridded to see if they can find it more specifically. They said her case is a bit unusual for a TS kid because there is not a tuber near the area of brain where the seizures are coming from.
Dr. Lee said it was a very diffuse area and his concerns are that there is so much activity that if they do not do surgery that permanent damage may occur that will effect her motor skills.
As scary as the thought of my baby having brain surgery is this is very good news. Now I just have a wait until we hear from the neurosurgeon for the date.
Wow, Doorsjam. That's both nervewracking and wonderful at the same time!
It's amazing how science has advanced in brain surgery. I have a friend who had a few brain tumors and ended up in Cooper Hospital in New Jersey. She had surgery down deep in the brain a couple of years ago. They had to bypass so many areas in the brain where it could have changed personality and just body well being, but she was out of the hospital within a week and is better than ever.
Amazing things are happening., http://www.cooperhealth.org/content/Neurology.htm
I wish you and your daughter the best of health. You are right that a two year old shouldn't have to deal with watching out for a three year old, but how wonderful is it that there is that love and bond.
All the best to you and thank you for sharing this and I'm looking forward to the good news after the surgery!
Be kind, man
Don't be mankind. ~Captain Beefheart
__________________________________
Just a quick update. We are heading to Cincinnati on Thursday to meet with the neurosurgeon. So, hoping that we will have a surgery date at that time.
I hope that the surgery goes very easy for you and your daughter.
I also have twin daughters. Mine just turned 2 last month. Mine are identical and had TTTS-twin to twin transfusion syndrome. My Clara spent 17 days in NICU , she was the recipient in the TTTS, and my Eleanore spent over 3 months in NICU, she was the donor.
Clara is fine now with no delays or anything. Eleanore has several seizures a day and has only about 5% functioning brain. I feel so badly that in a few years Clara will feel guilty how things turned out even tho it is not her fault.
Eleanore has had several surgeries, she has had shunts put in twice now and has a feeding tube. She has come thru all of her surgeries fine and I know your daughter will too!
Now I am going to go look at your pictures, everyone says my twins don't look alike either even tho they are identical. Clara has brown hair and it has just a bit of curl. Eleanore hair is much darker and she has tons more. But some say her seizure meds make it grow faster.
Editing to say, your girls are gorgeous!!! So sweet and happy!
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
Kept you in mind especially today. Hope the trip is/was safe. I wish you have a date you are comfortable with, and feel comfortable with the neurosurgeon.
I have to say that I am more scared now than ever but still feel that we need to do this surgery for Cassidy's sake.
I think I am more scared now because its "real" and I have seen things literally in black and white.
Basically, her entire left side is affected. When they did the scan with the radioactive isotopes while she was having a seizure it showed about 7 or 8 "hot spots" of seizure activity all over the left side.
What that means? Well, he basically told us that this surgery would not be the "miracle" that we had hoped for. She will still have seizures but she may have less. They will not go in and resect every place that she is having seizure activity. Their goal is to resect the area where most of the activity is coming from. We are hoping that this will be the area that she still breaks through while on medication. So with that gone she can then have seizure control with medication or a VNS implant. Not exactly what I was hoping to hear. She is not their ideal candidate because she is not a clear cut case but they still feel that the reward of some seizure control is better than the risk of having the uncontrolled seizures.
We will be in the hospital for 2 weeks but Cassidy and I will stay an additional week for follow up. We dont have a surgery date yet. Looks like it will be the beginning of October or November.
She will have 96 grids placed on the left side of her brain and they will make a ? mark shaped incision.
He heard and saw her breathing and finally someone is going to do something. She will be admitted early to the hospital to have a pulmonology work up and sleep apnea study. So what ever the date is for the surgery we will be admitted the Thursday before. The 1st surgery will be on Monday to place the grids. If they get enough information they will do the 2nd surgery to resect on Friday or the following Monday. She will then be discharged on Thursday or Friday to the Ronald McDonald house.
Make A Wish is coming Wednesday night for Cassidy to officially make her wish. We have been bringing Disney or Mickey Mouse into conversation a little more often lately with the girls. Cassidy is talking more but I still dont know how they will get her to say what she wants. If they dont really understand and just ask her what she wants she will probably just say "Juice". I dont want a trip to Minute Maid.
I think they will be bringing a gift basket or something for the girls too. When they called they were asking me things that Cassidy likes and then they asked about Kiley too. I thought that was nice that they realize that this is hard on the siblings too.
The girls at MAW asked me if Cassidy understood the graveness of her condition. Um no. She is 3 yrs old and she is developmentally delayed. Kiley on the other hand understands When we went to Cincy to the neurosurgeon she asked if we were going to Cassidy's "brain doctor".
Would it be too much if we dressed the girls in the princess dresses when MAW comes? I know I can get her to say Cinderella and Mary Poppins. Those should both count, right?
__________________
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
I dont think that would be too much at all. As long as the girls want it. If your girls like Cinderella and Mary Poppins then that is great.....I am a bit slow (please forgive me), but do they have to say what they want??? I am sure MAW could understand all kids might not be able to "voice" thier wants. At any rate, please do not hesitate to ask for the right things. And you dont have to explain all of the procedures ^ I was just curious so i can understand better.
I just wanted to thank-you on a personal level for mentioning all of that to us. I am sure it wasnt easy to write, but thanks sooo much for keeping us up-2-date.
I am thinking about the girls and asking my family and friends to do the same.
Again, I am beyond words in my sympathy and concern. I think as parent you are doing an amazing job with this....great inspiration to other families dealing with this. I hope your family is getting some good moments with each other right now amongst all of this heartache and stress.
PLEASE write more if you want to. Let us know if you want us to do anything.
((Cassidy)) @-)---
She is such a strong person...I can just feel her strength and her sister's.
If you have any concerns about surgery or strong intuition about something thats not right, PLEASE be pushy- for your girl's health. Dont be shy to ask family members, and friends to help out too. edit: I am sure you already know all of this. We just want the best for all of you.
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.
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
Comments
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Isnt it some kind of torture to tell a parent we want to do brain surgery on your kid but we cant tell you when yet?
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'd think every single moment is torture....so damn scary and happy at the same time. I wish you peace of heart and lots of great vibes coming your way!
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
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
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
http://www.myspace.com/brain_of_c
I just can't imagine the ups and downs you must go through in a day's time as you contemplate this.
You are all in my prayers...
definitely keep us updated!
Your family is great inspiration to us all. I am going to be keeping her in my thoughts and prayers and ask others to do the same.
Please let us know if you need anything. You have really made me want to learn more about this.
(((CASSIDY)))
I am sorry that Kiley has to go through this as well. Both girls seem amazing at such a precious age.
@--)
for those who dont know.
Good luck to your daughter and your family.
It's amazing how science has advanced in brain surgery. I have a friend who had a few brain tumors and ended up in Cooper Hospital in New Jersey. She had surgery down deep in the brain a couple of years ago. They had to bypass so many areas in the brain where it could have changed personality and just body well being, but she was out of the hospital within a week and is better than ever.
Amazing things are happening., http://www.cooperhealth.org/content/Neurology.htm
I wish you and your daughter the best of health. You are right that a two year old shouldn't have to deal with watching out for a three year old, but how wonderful is it that there is that love and bond.
All the best to you and thank you for sharing this and I'm looking forward to the good news after the surgery!
Don't be mankind. ~Captain Beefheart
__________________________________
best of luck!!
hugs to all of you!!
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
I hope that the surgery goes very easy for you and your daughter.
I also have twin daughters. Mine just turned 2 last month. Mine are identical and had TTTS-twin to twin transfusion syndrome. My Clara spent 17 days in NICU , she was the recipient in the TTTS, and my Eleanore spent over 3 months in NICU, she was the donor.
Clara is fine now with no delays or anything. Eleanore has several seizures a day and has only about 5% functioning brain. I feel so badly that in a few years Clara will feel guilty how things turned out even tho it is not her fault.
Eleanore has had several surgeries, she has had shunts put in twice now and has a feeding tube. She has come thru all of her surgeries fine and I know your daughter will too!
Now I am going to go look at your pictures, everyone says my twins don't look alike either even tho they are identical. Clara has brown hair and it has just a bit of curl. Eleanore hair is much darker and she has tons more. But some say her seizure meds make it grow faster.
Editing to say, your girls are gorgeous!!! So sweet and happy!
((HUGS and Best Wishes))
PeAcE.
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
My thoughts are with you.
God Bless
Thoughts are with you.
@--)
I think I am more scared now because its "real" and I have seen things literally in black and white.
Basically, her entire left side is affected. When they did the scan with the radioactive isotopes while she was having a seizure it showed about 7 or 8 "hot spots" of seizure activity all over the left side.
What that means? Well, he basically told us that this surgery would not be the "miracle" that we had hoped for. She will still have seizures but she may have less. They will not go in and resect every place that she is having seizure activity. Their goal is to resect the area where most of the activity is coming from. We are hoping that this will be the area that she still breaks through while on medication. So with that gone she can then have seizure control with medication or a VNS implant. Not exactly what I was hoping to hear. She is not their ideal candidate because she is not a clear cut case but they still feel that the reward of some seizure control is better than the risk of having the uncontrolled seizures.
We will be in the hospital for 2 weeks but Cassidy and I will stay an additional week for follow up. We dont have a surgery date yet. Looks like it will be the beginning of October or November.
She will have 96 grids placed on the left side of her brain and they will make a ? mark shaped incision.
He heard and saw her breathing and finally someone is going to do something. She will be admitted early to the hospital to have a pulmonology work up and sleep apnea study. So what ever the date is for the surgery we will be admitted the Thursday before. The 1st surgery will be on Monday to place the grids. If they get enough information they will do the 2nd surgery to resect on Friday or the following Monday. She will then be discharged on Thursday or Friday to the Ronald McDonald house.
Make A Wish is coming Wednesday night for Cassidy to officially make her wish. We have been bringing Disney or Mickey Mouse into conversation a little more often lately with the girls. Cassidy is talking more but I still dont know how they will get her to say what she wants. If they dont really understand and just ask her what she wants she will probably just say "Juice". I dont want a trip to Minute Maid.
I think they will be bringing a gift basket or something for the girls too. When they called they were asking me things that Cassidy likes and then they asked about Kiley too. I thought that was nice that they realize that this is hard on the siblings too.
The girls at MAW asked me if Cassidy understood the graveness of her condition. Um no. She is 3 yrs old and she is developmentally delayed. Kiley on the other hand understands When we went to Cincy to the neurosurgeon she asked if we were going to Cassidy's "brain doctor".
Would it be too much if we dressed the girls in the princess dresses when MAW comes? I know I can get her to say Cinderella and Mary Poppins. Those should both count, right?
__________________
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 just wanted to thank-you on a personal level for mentioning all of that to us. I am sure it wasnt easy to write, but thanks sooo much for keeping us up-2-date.
I am thinking about the girls and asking my family and friends to do the same.
Again, I am beyond words in my sympathy and concern. I think as parent you are doing an amazing job with this....great inspiration to other families dealing with this. I hope your family is getting some good moments with each other right now amongst all of this heartache and stress.
PLEASE write more if you want to. Let us know if you want us to do anything.
((Cassidy))
@-)---
She is such a strong person...I can just feel her strength and her sister's.
If you have any concerns about surgery or strong intuition about something thats not right, PLEASE be pushy- for your girl's health. Dont be shy to ask family members, and friends to help out too. edit: I am sure you already know all of this.
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.
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