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Old 03-07-2005, 08:51 AM   #1
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tkdmom96 HB User
Hello...just wanted to quietly share

Hello everyone...

I just wanted to share with you that Katie's surgery was 9 months ago today and she remains seizure and aura free, while on Lamictal. There isn't a day that goes by...we are so very thankful...

We have an Epi appt. on May 4th and Katie starts her driver's ed classes today, after school.

She is doing well in school, with a few short term memory issues (mostly in 2 classes...Trig and Chemistry). We are using reinforcement techniques.

All my best to everyone...you aren't far from thought...

Lisa T, how are you?

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Last edited by tkdmom96; 03-07-2005 at 08:52 AM.

 
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Old 03-07-2005, 10:51 AM   #2
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gagcas HB User
Re: Hello...just wanted to quietly share

hey vicki,

for what its worth, and what you all went thru, there would be no "quietly" about it. lol. you and your whole family have been thru it all and pulled thru just wonderfully. congrats to you both.

tell katie good luck with the driving, and if i were taking trig and chem i'd have memory issues too......and im not epileptic. hee hee
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Old 03-07-2005, 01:05 PM   #3
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buliem HB User
Re: Hello...just wanted to quietly share

Once again awesome news for you! That is wonderful. I'm so happy for all of you. Don't let my wallowing in self pity fool you. I am so glad for all of Katie's successes. She certainly deserves it.

Julie

 
Old 03-07-2005, 01:26 PM   #4
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Re: Hello...just wanted to quietly share

Hi Vicky

I continue to be thrilled for Katie! She is so fortunate. I hope the drivers ed goes well. I'm sure it will.

I have always used a lot of word association with Bonnie, it seems to help. She usually laughs at all my 'tricks'. She now teaches this to the other students!

My son is in the first year of college and is taking developmental math. He wants to drop out of that! He says he doesn't get it and never will. She's doing awesome to just be taking trig and chemistry!

Hopefully Bonnie will only be on lamictal this summer, if it will work alone.

Good luck

Debbie

 
Old 03-08-2005, 08:31 AM   #5
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Cool Re: Hello...just wanted to quietly share

How AWESOME for Katie and for your entire family!!! But you should be loud!!! Its always nice to see good news on the board!! I bet she is excited to start her driving classes. (I remember the terrifying, excitement I felt) I had never touched a car before my classes, boy did I take my instructor for a spin!!! heehee

Take care sweetie and PLEASE share the good news, right now I have hit such a rough patch and I'm not ready to share, but I really needed to remember there is light out there!!!!

Lisa T
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Old 03-08-2005, 08:45 AM   #6
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gagcas HB User
Re: Hello...just wanted to quietly share

lisa T,

how good to see you on here. i havent seen you in a long time. everything ok. you said a rough patch. just remember we are always here to tlakt o. we may not post alot but we do check daily. have a good day.
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Old 03-08-2005, 10:36 AM   #7
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Re: Hello...just wanted to quietly share

It is so good to see a good report! GO Katie! Sounds like things are going well! So neat she is starting driver's ed, too....
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Old 03-08-2005, 12:01 PM   #8
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Re: Hello...just wanted to quietly share

Thank you everyone...it's hard to believe a year ago now we were preparing for the first surgery (April 4th), burr holes on both sides w/ strips, to see if she would be going forward or not. We are thankful every day.

I'm also very sad that others are feeling such pain right now, that it brings on strong feelings of guilt. Why Katie? It is not a question to be answered, at least not in this lifetime. And I know many of you are at the beginning of your journeys. I have been there...almost 16 years of watching Katie go from med to med, the calls from school about soiled clothing, the fear of her having a seizure at a friend's house when she was younger. I have felt the aggrivation with doctors and schools and the sheer heartache of having a child with E. We are not out of the woods completely, but I wanted you all to know I have not forgotten and take nothing for granted...GBTG.

Peace to all and thank you for your support of Katie and our family...Lisa, share when you are ready...we're here for you dear...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Last edited by tkdmom96; 03-08-2005 at 12:03 PM.

 
Old 03-08-2005, 04:41 PM   #9
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Re: Hello...just wanted to quietly share

So nice to hear from you. I am very happy to hear that Katie is doing so well and continues to progress. She is very fortunate, but not just in that she had the surgery and is doing great. She is also fortunate that she has a Mom like you who went the distance for her. We're gonna have to call you Rocky. Not all people have such strong, eager to learn, caring people in their corner. Please do not feel guilty because other people's situations may not be like Katie's. There can be many reasons as to why other's cases are different. In my case. no one told me early on what you learned online. Many people do not have the needed information to begin to think about other options. Some may choose not to take advantage of the possible options even if they do find out what they are. Some do not do the footwork, research needed to find a better way and still other may not have the support you gave your child and are not strong enough to do it alone. Others may not be a candidate for other options etc. There are many reasons, but we all are given choices I have learned provided we are aware they are there, and you made your choice. You made the right one for your child, your family, and yourself. Regarding the Math course, that was my best subject, and I do have epilepsy. Sounds like one who posted thinks that if you have epilepsy, then it is a given you will have trouble in math. Not me! I took my first dose of AED as a Freshman in HS and made A's throughout HS in Math. Heck, I even taught the other, nonepileptic, students in my class how to do Algebra and Trig. One may not have passed without it and she is a first grade teacher today. I am back in college and got an A in my Computer Science course and will start Statistics in 2 weeks. I am strongly considering finishing the Math degree I started long ago when the AEDs got in the way. We shall see on that, but I just wanted to say that having epilepsy or any other condition is not an automatic excuse to sell a person short so that they do not shoot for the stars. Only they will choose when and how far to go. I wish you and your family continued success, progress, and happiness. It would have been a good idea to have a screen name in the profile so you can IM when you were going through the process. Take care. Living One day at a time. Phoebe

 
Old 03-09-2005, 12:36 PM   #10
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Re: Hello...just wanted to quietly share

Thank you Phoebe...I started to think about what I had posted. A person must have the inner drive to push until that person receives the answers they are looking for. I consciously quit my job with the school district and dedicated the next year to Katie. I said, "there must be something more out there..." and I was determined to find it or not find it. I wanted to make sure I wasn't missing anything. No stone unturned.

That is when I returned to the boards to look for your posts from 3 years ago (now) regarding surgery. I new we needed a different doctor, a specialist and I was committed to doing WHATEVER it took to find some answers or new direction. I was going to fly, drive, row a boat, whatever. We are not at all "wealthy" and have small business owner insurance (HMO). But it didn't matter, Katie was my (our) focus.

I had no idea I would be considering a lengthy stay at Johns Hopkins or the Cleveland Clinic. Had no idea how we would pay for an out of state specialist. We did have a home equity line of credit established, which is how we paid for the surgeries and tests that were done over the course of the year. However, it was after contacting the Cleveland Clinic that Dr. Wylie told me about an Epi at Children's Hospital of WI...where we HAD been all along! I don't want to dwell on that ridiculous story for everyone again.

So, I guess it is about choices...how far are you willing to take it? Are you going to settle for what one doctor says, or challenge and push the envelope? Get other opinions? Seek a specialist? Do whatever it takes. I wasn't willing to settle any longer. I gave the neuro we had for 13 years plenty of time...and time was up. As I'm typing this, it is bringing back the feelings of exhiliration I had when I was doing what I only wish I would have done sooner. It was an empowerment I had never experienced before. Taking control back from a doctor who was just a MED PUSHER, time waster and not professional enough to tell us he couldn't help Katie anymore. And we had had enough of that.

Thanks for the clarity on that Phoebe...what a connection we have...HP

We are living one day at a time...Peace...Vicki

p.s. I will have Katie read your comments on your experiences with math. It may help boost her esteem. She's holding her own, at a "C". And her Chemistry grade has come up to a solid "B". So there has been progress. She still wants to go into nursing (NP or PA), so she knows she needs to do well in those areas.
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Old 03-09-2005, 05:35 PM   #11
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Re: Hello...just wanted to quietly share

Hi, As always, it is good to hear from you. You are right about that connection, HP. The events in my life these past weeks and months have been amazing. The areas I am pondering over which to choose for a career path all have different educational paths. A week ago, I received an offer to take a position that places me right n the middle of three people each of which has one of these three different degrees/majors I have been wondering about! Tif any in nursing school toward a PA. You do go to nursing school to be an NP. More research is needed like you did. Take care and keep in touch. Phoebe

 
Old 04-05-2005, 10:23 AM   #12
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Re: Hello...just wanted to quietly share

Vicki-
It's great to hear that you and Katie are doing so well! My dad is in the hospital doing the invasive monitoring right now and I can only hope that I'll be saying the same thing as you in a few months! Thank you for all you have taught me about what to expect--it's come in very handy! My dad is just amazed that the internet was cappable of connecting me to someone that has had this proceedure done. CONGRATS AGAIN! That's SO great to hear! Keep us posted so we can join in a little bit of your celebration!
Dawn

 
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