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Bonnie,
Sorry it's taken me so long to respond. Things are just nuts! When I loaded Blair's photo...I've got a slow little laptop, and it loaded her from the top down. When those beautiful blue eyes loaded, they just popped!! What a beautiful girl. She just sparkles.
My little girls name is Chelsi. ...I uploaded the only 2 pics I have on my computer. The 1st one is her 3rd grade photo, and the other one is a low-quality shot from my video camera. She, too, is quite the character.
She had an appointment yesterday with her neuro from Childrens. We've upped her Zonegran to 125/day. She also takes keppra. She's not seizure free, and we have to watch her like a hawk, but you take what you can get, eh?
My very best to you and Blair,
Sue
a real pooIn a message dated 10/31/2005 10:17:25 P.M. Pacific Standard Time, BlairInspirations1@... writes:
Hi Sue!We hate Halloween also! Years ago we would dress Blair up and try to go door to door. With Blair's developmental delay, she didn't quite grasp the whole trick-or-treating protocol - knock on a door, say "trick-or-treat", get some candy, say thank you and goodbye. Blair got very frustrated when we would knock, some one would open the door, and Blair wanted to go inside! She got so worked up that she had a seizure on the sidewalk. We tried it twice with the same results. Now she just enjoys saying "just a moment!" when there a knock on the door, and saying "bye bye"Blair has had seizures since she was four months old. She was actually developing normally, but took a nose dive at about one year old. She went into status on three occasions for about 45 minutes each time. Depakote finally stabilized her, so we haven't been in status since. She has tonic-clonics about every other week, lasting about a minute. She also has atypical absence (eye fluttering) every day. Some days are great, some days are the pits. Blair has core temperature issues also. She does not do well in the heat - she gets over heated very easily. We can't do a lot of exercise because she hyper-ventilates easily and has a seizure.Blair has a VNS and is on depakote, lorazepam, and zonagran. This seems to be the best combination for the best control. We've been going to UCLA since she was one, and her doctor is going to refer us to some up there. Blair is also small for her age, we always thought it was all the drugs! We're actually coming up next week to look at some houses. We just put our house on the market so if everything goes well, we'll be there just after Xmas.What's your daughter's name? Attached is a photo of Blair - she's a character, you'll have to meet her sometime.Take CareBonnieSoon to be in Oregon!!!----- Original Message -----From: Mrmrssoso@...Sent: Monday, October 31, 2005 9:06 PMSubject: Re: [Cent_Wa_Epilepsy_Support] OregonHi Bonnie,I have an 11 year old Daughter with epilepsy. She's had seizures since she was 10 months old. Oddly enough, she only has seizures when her inner core heats up, whether it's from a fever, or playing too hard. The last couple of years, she's been having 2-4 grand mal seizures 6 months or so. I'm glad to get Halloween under our belt this year, because last year, she hit about the 10th house, put her little plastic pumpkin up and had a seizure right their on some poor peoples porch! I hate Halloween.The good news is that she's healthy and happy other than the seizures. She's small for her age and has some learning delays. She takes speech at school, but managed to pull down some pretty good grades last year. She sees a Dr. here at Children's Village in Yakima that travels from Children's Hospital in Seattle every three months. I would imagine that you will be closest to Portland, which I'm sure has excellent care. Tell me more about your daughter. I'll share everything with you I can!Sue OwnbyYakimaevery a message dated 10/29/2005 9:38:02 A.M. Pacific Standard Time, BlairInspirations1@... writes:Hi Sara,It looks like we've narrowed it down to the Dallas area. Are you the parents of someone with seizure disorder? We need to be near a hospital - just in case - and we want to be able to let our daughter have some animals. In So. Calif. it's impossible to find any land that is affordable. We're so excited about coming up there, we'll be able to give our girl a great quality of life.Take Care,Bonnie Shonholtz----- Original Message -----From: Tom and Sara TinkerSent: Saturday, October 29, 2005 8:51 AMSubject: Re: [Cent_Wa_Epilepsy_Support] OregonHi Bonnie,
Where in Oregon are you thinking of moving? Portland and it's subburbs are
pretty great. It is a beautiful city with lots to offer in the way of health
issues.
I live in Yakima Washington. It terms of medical help, it is pretty lacking
but Seattle is not so far of a drive.
Keep us posted, okay?
In Friendship,
Sa'ra
----- Original Message -----
From: "blairinspirations" <BlairInspirations1@...>
To: <Cent_Wa_Epilepsy_Support@yahoogroups.com>
Sent: Tuesday, October 25, 2005 10:21 AM
Subject: [Cent_Wa_Epilepsy_Support] Oregon
> HI Everybody!
> I'm the mom of a fifteen year old girl with LGS (Lennox-Gastaut
> Syndrome), develpomental delay, and autistic-like behavior. We
> currently live in So. Calif., but are considering moving to Oregon. Is
> there a particular county, or area that "shines" as far as services and
> schooling available (example - social skills development, theraputic
> horseback riding, recreational programs, high school programs)?
>
> Thanks in advance
>
> Bonnie
> Blair's mom
>
>
>
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>
> Yahoo! Groups Links
>
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