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BantamFan4Life said:
I forgot to ask--what kind of epilepsy/seizures do you have?
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Who knows? There are as many types of seizures as there are doctors who decide they all need 'labels'!
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Way back when I was diagnosed they threw the kitchen sink at mine - "nocturnal Jacksonian psychomotor temporal lobe seizure disorder." Yeah, tell that to a 26 year old who's a thousand miles from home, raising 3 little kids in a big huge city, and whose husband has just left for a 9 month at sea deployment. No pressure!
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But we got through it, found a low dose med that works with minimal side effects,and life goes on! And I think they've redone all of the redefining and renaming seizure types now. Daughter-in-law Jenny just has knock-down, really violent gran mal seizures and granddaughter Kendra has seizures that are so small if you aren't looking for them you miss them...but she can have dozen in an hour.

Funny story. When Kenny and Jenny first started dating, she didn't tell him about her epilepsy. Hers weren't under control at that time and she'd had more than young man turn tail and leave when he found out. So I think Jen said it was their 2nd date and they were going to grab a couple of pizzas then meet some friends. She asked him if they could stop at Lewis Drug so she could pick up her prescription. She got back in the car and tossed the bag on the floor of the car. When they got to the pizza joint, she just ran in to pick up their called-in order. My snoopy nosed son picked the prescription bag off the floor and read what was in it. Jen came out, saw him toss the bag back down, and was crushed. But Kenny just looked at her, said, "Dilantin, huh? Ma used to take that one for her epilepsy but it didn't work so they switched her." Jenny said she just stared at him for a minute - he got it, he really GOT it, and she was so relieved. She said, "I knew right then that I was gonna marry that guy!"
 
I'm thread hopping to get this posted in as many places as I can to start a prayer chain for Kendra.....

The kids just left for Denver this morning. I've got Katie and Evan for the next week. Kendra will be having her 6 month regular Spina Bifida clinic, then she has appointments for Autism screening. That's more a formality - we already know she's on the autisim spectrum so nothing they say will really surprise us.

Then for the first time they'll be meeting with the surgical team about her Ace/Mitrofanoff procedure. They'll do a more in-depth series of exams than just her usual ultrasounds and MRI, and make the final determination about her candidacy and possible surgical date. Jenny and I will end up down in Denver when they do it, and we'll likely be down there for about a month - not looking forward to that but we've done it before, we can do it again. I just hope this works to help give Kendra a more normal life. This is a short thing about the process and the prognosis. From what I understand, when it works it works great, when it doesn't it's a disaster.

So asking for prayers for a safe journey both there and back, and good results for Kendra! Thanks!

http://www.coloradourologists.com/pedia ... fanoff.htm
 
Blooie said:
I'm thread hopping to get this posted in as many places as I can to start a prayer chain for Kendra.....

The kids just left for Denver this morning. I've got Katie and Evan for the next week. Kendra will be having her 6 month regular Spina Bifida clinic, then she has appointments for Autism screening. That's more a formality - we already know she's on the autisim spectrum so nothing they say will really surprise us.

Then for the first time they'll be meeting with the surgical team about her Ace/Mitrofanoff procedure. They'll do a more in-depth series of exams than just her usual ultrasounds and MRI, and make the final determination about her candidacy and possible surgical date. Jenny and I will end up down in Denver when they do it, and we'll likely be down there for about a month - not looking forward to that but we've done it before, we can do it again. I just hope this works to help give Kendra a more normal life. This is a short thing about the process and the prognosis. From what I understand, when it works it works great, when it doesn't it's a disaster.

So asking for prayers for a safe journey both there and back, and good results for Kendra! Thanks!

http://www.coloradourologists.com/pedia ... fanoff.htm
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and prayers
 
Blooie said:
I'm thread hopping to get this posted in as many places as I can to start a prayer chain for Kendra.....

The kids just left for Denver this morning. I've got Katie and Evan for the next week. Kendra will be having her 6 month regular Spina Bifida clinic, then she has appointments for Autism screening. That's more a formality - we already know she's on the autisim spectrum so nothing they say will really surprise us.

Then for the first time they'll be meeting with the surgical team about her Ace/Mitrofanoff procedure. They'll do a more in-depth series of exams than just her usual ultrasounds and MRI, and make the final determination about her candidacy and possible surgical date. Jenny and I will end up down in Denver when they do it, and we'll likely be down there for about a month - not looking forward to that but we've done it before, we can do it again. I just hope this works to help give Kendra a more normal life. This is a short thing about the process and the prognosis. From what I understand, when it works it works great, when it doesn't it's a disaster.

So asking for prayers for a safe journey both there and back, and good results for Kendra! Thanks!

http://www.coloradourologists.com/pedia ... fanoff.htm
Click to expand...
I will be praying for you!
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