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Kite Land Talk => Website Discussion => Topic started by: Allen Carter on December 04, 2011, 10:25 AM



Title: My daughter's long battle with seizures
Post by: Allen Carter on December 04, 2011, 10:25 AM
Some of you have met my daughter Caitlin, many of you have heard me talk about her over the years. She has a rare affliction called Rett Syndrome. Among the many challenges and disabilities this has put in her path over her life, seizures have been by far the most dangerous.

For years she has avereged 5 seizures a week. We learned how to cope long ago, and other than injuries from falls, there was never any noticeable damage from the seizures.

This changed suddenly two weeks ago. Caity started to have one small seizure after another and the normal meds (even in high doses in the ER) did nothing. She went on life support so they could use stronger sedatives to get her seizing brain to settle down. It hasnt worked. She was transferred to Stanford which is one of the best places for Neuro ICU and has been in an induced coma for several days. Each time they have raised her up out of sedation the seizures have come back.

The doctors have determined that her brain is too damaged to recover  If there is no improvent tomorrow we'll remove her from life support and let her fly in a place with smoother winds.

I do believe in "medical miracles". There is just so much even the top neurologists dont know about the brain. Tomorrow morning, after a final deep, deep 72 hour coma, there is a chance that her brain will have started to heal.

Caitlin is an amazing person and has lived with and overcome more adversity than anyone I know. If miracles are out there, she'll snag one.


Title: Re: My daughter's long battle with seizures
Post by: kiteking on December 04, 2011, 10:39 AM
Allen,

Our prayers are with you and Caitlin


Title: Re: My daughter's long battle with seizures
Post by: DD on December 04, 2011, 10:39 AM
Keeping you in our thoughts and prayers
Smooth winds


Title: Re: My daughter's long battle with seizures
Post by: mikenchico on December 04, 2011, 10:50 AM
Allen our thoughts and prayers will be with you and your family. We are so touched hearing your news and thankfull that you have choosen to share it with us all here so we can send our energy your way. We wish you and your family strength through these times and if there is anything further we can do please let us know. My Google voice number is linked at the website icon under my avatar.

Mike Hagen & Rhonda Davidson



Title: Re: My daughter's long battle with seizures
Post by: chilese on December 04, 2011, 11:00 AM
Prayers sent.


Title: Re: My daughter's long battle with seizures
Post by: adx1592 on December 04, 2011, 11:05 AM
Allen,

My thoughts and prayers are with you and Caitlin.


Title: Re: My daughter's long battle with seizures
Post by: Flying Fish on December 04, 2011, 11:07 AM
My thoughts are with you ....


Title: Re: My daughter's long battle with seizures
Post by: RobB on December 04, 2011, 11:14 AM
My strongest wishes for the best for your daughter, Allen. I can't even imagine how hard this must be for you & your family.
~Rob.


Title: Re: My daughter's long battle with seizures
Post by: Jynx on December 04, 2011, 11:31 AM
I sit here wishing I knew the right words to send your way...

Please know that you and Caitlin are in my thoughts, that I send you both cyber hugs, and truly wish there was more I could do.

"My thought is to go outside and think of the biggest hug and send it on its way to you on the wings of the breeze. So when in need, hopefully, you'll go outside, feel the breeze, and it will surround you in hugs from all directions...my hugs are on the way!"
~ Unknown author


Title: Re: My daughter's long battle with seizures
Post by: B-13 on December 04, 2011, 11:41 AM
Allen, from my small island in the Indian Ocean, all my prayers and thoughts fly to you and Caitlin.
I wish you and the family all the strength needed to overcome all this.

With Love

Bryan


Title: Re: My daughter's long battle with seizures
Post by: thief on December 04, 2011, 11:44 AM
The best thoughts possible are with you both Allen!


Title: Re: My daughter's long battle with seizures
Post by: ozonejim on December 04, 2011, 11:47 AM
Be strong my friend, positive thoughts coming your way.


Title: Re: My daughter's long battle with seizures
Post by: DWayne on December 04, 2011, 11:50 AM
My heart goes out to you Allen. I'm not sure I could endure all you've been through lately. I wish the best for you both.

Denny


Title: Re: My daughter's long battle with seizures
Post by: fidelio on December 04, 2011, 01:59 PM
prayer sent.


Title: Re: My daughter's long battle with seizures
Post by: ko on December 04, 2011, 02:46 PM
You and yours will be in tracey and my thoughts and prayer  Allen
Kurt


Title: Re: My daughter's long battle with seizures
Post by: jaydub on December 04, 2011, 03:53 PM
Norm's words sum this up for me.

Over the last year you have gone through more than any man has a right to bear and my heart goes out to you

Be strong.


Title: Re: My daughter's long battle with seizures
Post by: Wayner on December 04, 2011, 04:21 PM
My prayers sent as well.


Title: Re: My daughter's long battle with seizures
Post by: Ca Ike on December 04, 2011, 04:37 PM
Words never seem to be enough in situations like this.  If there's a miracle out there may it come your way and Catlin make a full recovery. 


Title: Re: My daughter's long battle with seizures
Post by: WinterDaze on December 04, 2011, 06:51 PM
Sounds like the best are on it Allan..

Best of luck, hope, and wishes to you and yours

S


Title: Re: My daughter's long battle with seizures
Post by: Lee S on December 04, 2011, 07:38 PM
I am so sorry to hear that Allen.  You and Caitlin are are in my thoughts and prayers, and and I am wishing for the best. Whatever you need, just say the word, and we'll all see it's done.

Lee


Title: Re: My daughter's long battle with seizures
Post by: B-13 on December 04, 2011, 07:45 PM
Woke up this morning Allen and could not resist in jumping to the forum and see how many of us share our thoughts to You can Caitlin. We all pray for you and here is a song i always think about when things get dark in life..

Don't know if you like this style but words are great

Sweetbox - Everything's gonna be alright (http://www.youtube.com/watch?v=lNyjkRlgO5s#)

B-13


Title: Re: My daughter's long battle with seizures
Post by: emegaz on December 04, 2011, 09:14 PM
I have some experience with seizures. A very close friend has them daily. My prayers go out for you.


Title: Re: My daughter's long battle with seizures
Post by: Ara Ararauna on December 04, 2011, 10:40 PM
All my best wishes.
I have been part of this forum for only one month and I already feel how strong this community is. Hence, I can perfectly understand the general feeling and share your grief, but also your and everyone's hope.

N.


Title: Re: My daughter's long battle with seizures
Post by: alleykat on December 05, 2011, 05:11 AM
Prayers sent


Title: Re: My daughter's long battle with seizures
Post by: inewham on December 05, 2011, 06:14 AM
I'm lost for words except to wish Caitlin all the best and wish you all the strength in the world to help you through this.

Ian


Title: Re: My daughter's long battle with seizures
Post by: Hadge on December 05, 2011, 10:17 AM
Allen, I've only just found this post and I'm lost for words.   My son has suffered from seizures for many years and last year was particularly bad and I spent many nights sitting by his hospital bed, thankfully he is now much better.  I can only begin to imagine how you are feeling at this time.

My thoughts and prayers are with you and Caitlin.

Be strong.


Title: Re: My daughter's long battle with seizures
Post by: Ben on December 05, 2011, 10:52 AM
Prayers sent. With God, all things are possible.


Title: Re: My daughter's long battle with seizures
Post by: madhabitz on December 05, 2011, 11:02 AM
Oh Allen, my heart aches for you and your family. I don't know you well at this point, but the first time I met you I could see how proud and inspired you are by Caitlin. Seeing how much you love her gave me that lovely warm'n fuzzy feeling, you know?

No parent should ever have to make the decisions you are facing. I am so desperately sorry you guys are going through this and wish with all of my heart that I could do something... anything to ease the way.

You and yours are in my thoughts and prayers.

Nancy


Title: Re: My daughter's long battle with seizures
Post by: brettgrant99 on December 05, 2011, 11:38 AM
Wow  :(

Words escape me right now, so best not to say anything other than you are in my thoughts.

Brett


Title: Re: My daughter's long battle with seizures
Post by: boomertype on December 05, 2011, 01:59 PM
Allen, my prayers are with you!


Title: Re: My daughter's long battle with seizures
Post by: JimB on December 05, 2011, 02:44 PM
Allen,

Don't know what to say.

Thoughts and Prayers.


Title: Re: My daughter's long battle with seizures
Post by: Jeepster on December 05, 2011, 04:04 PM
My prayers are with you and Caitlin.

Tom


Title: Re: My daughter's long battle with seizures
Post by: rmesm on December 05, 2011, 06:56 PM
Allen,  I'll keep you and Caitlin in my thoughts and prayers...        Mark



Title: Re: My daughter's long battle with seizures
Post by: Smplcty on December 05, 2011, 07:12 PM
Stay strong Allen you are in our thoughts and prayers.


Title: Re: My daughter's long battle with seizures
Post by: kiteman on December 06, 2011, 06:24 AM
I know there is nothing I can do, except ask God to take care of you and Caitlin! God bless both of you.

Don


Title: Re: My daughter's long battle with seizures
Post by: Gamelord on December 06, 2011, 11:15 AM
Allen,

Our prayers are with you and Caitlin.  I wish there was more we could do for you and your family though this hard time.



Title: Re: My daughter's long battle with seizures
Post by: King-J on December 07, 2011, 06:24 PM
Hey Allen, Best of wishes to you and your daughter, just got a chance to read this, and link to your other post from last year, YOU ARE ONE STRONG INDIVIDUAL, our thoughts are with you.


Title: Re: My daughter's long battle with seizures
Post by: DonCrash on December 08, 2011, 07:31 PM
Prayers and thoughts to you and your daughter


Title: Re: My daughter's long battle with seizures
Post by: Allen Carter on December 11, 2011, 04:34 PM
Caitlin Sara Carter took her last breath around 3pm today with family at her side. She's done with seizures for good and off on a new adventure.


Title: Re: My daughter's long battle with seizures
Post by: Ca Ike on December 11, 2011, 06:21 PM
Caitlin Sara Carter took her last breath around 3pm today with family at her side. She's done with seizures for good and off on a new adventure.

  I'm sorry for your loss Allen.  My condolences to you and your family.  MAy she rest in peace.


Title: Re: My daughter's long battle with seizures
Post by: ghfisanotti on December 11, 2011, 06:27 PM
I live half a world appart, I haven't had the pleasure to know Caitlin nor you Allen, but I've been following this thread for a few days and am so sorry to know that Caitlin had to depart, I hope her new adventure is easier than this one for her.
My best wishes for you and your familiy.

Gerardo.


Title: Re: My daughter's long battle with seizures
Post by: mikenchico on December 11, 2011, 06:39 PM
Allen

I have no experience to relate to your loss, I can't imagine having to make the choices you've had to. I saw a quote once I know from experience you'll understand, I don't have it exactly right but hopefully I can convey its feeling to share here

- The sadness and loss you feel at this moment are the result of the joy and blessings you had recieved -

I'm confident, when your time is right, you will be able to rejoice in the joy & blessings you've recieved. So we'll greive with you at this moment and be thankful you shared your joys with those of us who never met her. My prayers  for a speedy journey for Caitlin, I'll take some comfort knowing she will be spending Christmas with Amy and neither of them are alone this year.

I wish you a smooth journey down the path you have to walk again so soon.



Title: Re: My daughter's long battle with seizures
Post by: ko on December 11, 2011, 06:52 PM
God bless Allen Kurt and Tracey


Title: Re: My daughter's long battle with seizures
Post by: B-13 on December 11, 2011, 06:57 PM
Sending you all my strength to overcome this loss Allen

Caity flew for better and smoother winds...she is now happy and free

Bryan


Title: Re: My daughter's long battle with seizures
Post by: Jynx on December 11, 2011, 10:23 PM
Though a shared quote, it is heartfelt and sent with love...

My thought is to go outside and think of the biggest hug and send it on its way to you on the wings of the breeze. So when in need, hopefully, you'll go outside, feel the breeze, and it will surround you in hugs from all directions...my hugs are on the way!



Title: Re: My daughter's long battle with seizures
Post by: Jeepster on December 12, 2011, 06:10 AM
My prayers are with you Allen.


Title: Re: My daughter's long battle with seizures
Post by: Flying Fish on December 12, 2011, 06:30 AM
My condolences, Allen; my thoughts are with you and your family.


Title: Re: My daughter's long battle with seizures
Post by: inewham on December 12, 2011, 06:39 AM
Allen,

as a parent I can only imagine, you really do have my deepest sympathies. My thoughts are with you and your family.

Ian


Title: Re: My daughter's long battle with seizures
Post by: obijuankenobe on December 12, 2011, 07:10 AM
I am in tears.  As a relatively new parent, it is impossible for me to imagine your heartache.

Know that a kite will fly in Norway for your daughter this weekend if I can get one in the air.

obi


Title: Re: My daughter's long battle with seizures
Post by: kiteking on December 12, 2011, 11:22 AM
Our deepest condolences to you, I hope somehow you can have some relief in knowing Caitlin will be joining Amy in a more peaceful place.

Mike & Kristine


Title: Re: My daughter's long battle with seizures
Post by: DD on December 12, 2011, 02:21 PM
So very sorry, having been down this road very recently all I can say is do your best to get through each day



Title: Re: My daughter's long battle with seizures
Post by: Hadge on December 12, 2011, 02:43 PM
I'm so very sorry Allen, my thoughts are with you.


Title: Re: My daughter's long battle with seizures
Post by: fidelio on December 12, 2011, 03:41 PM
may mercy be your companion.


Title: Re: My daughter's long battle with seizures
Post by: Gamelord on December 12, 2011, 04:34 PM
My thoughts and prayers are with you and your family Allen.  I am choked up just thinking about all of this and so wish there was something I could do to help you with this terrible loss.  I try to justify this as well by thinking that at least the seizures are now done with, but it is a small compared to the loss.  I just don't know what to say other than we all share in the pain and hope that you can find some kind of comfort in knowing that.

May God bless you, Caitlin and your family.


Title: Re: My daughter's long battle with seizures
Post by: WinterDaze on December 12, 2011, 08:25 PM
Firstly, thank you Allen for sharing this journey with us, please know that even half a world away there's a little quite silence being dedicated to you and your loss.

Condolences to you and those that knew Caitlin.

Sincerely,

Shannon


Title: Re: My daughter's long battle with seizures
Post by: RobB on December 13, 2011, 04:42 AM
I Don't know what to say...

I am so sorry for your loss.

~Rob.


Title: Re: My daughter's long battle with seizures
Post by: jaydub on December 13, 2011, 05:43 AM
Allen,

My heart goes out to you at this difficult time.  I hope that in some small way these messages from both your real life and virtual friends here help with your loss.

Jon


Title: Re: My daughter's long battle with seizures
Post by: Allen Carter on December 13, 2011, 09:01 AM
Thank you all for your kind and wise words.

You can learn more about Caity's disorder at www.rettsyndrome.org (http://www.rettsyndrome.org)