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Old 01-25-2013, 08:20 AM   #706
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Mom - My ear is so much better today! I can touch my ear today so that is very exciting! Guess what, I had to book my trip to Las Vegas for next week. Ugh! I don't want to go!!!!!!! If I didn't have to go alone it would be much more fun, but I will be in class Tuesday - Friday.
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Old 02-01-2013, 12:19 PM   #707
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OK, where is everyone??? Sandy comes back from vacation and doesn't post?? hmmm???? We want to hear all about it!!

Only in Ohio can it be in the 60's Wednesday, then drop to the low 40's on Thursday, then 20's on Friday with SNOW!!! It was snowing pretty good here this morning with blowing winds, so our school system closed today. This is our 3 day this year. 1 was due to hurricane Sandy in October, 2nd was do to below temp's so most schools closed due to the temperature, and today due to the snow this morning, by 9ish it wasn't bad and now we have sun. SO weird!! Oh well, three day weekend for the kiddos!!!

Nothing else new. I posted the awesome report cards for all three kids.. SO proud!!

Heidi, so when do you go to Vegas? I'm sure you will be able to find some fun!

Barb, so when is the next Disney trip?

Denine, I guess you have been busy lately since you haven't posted much on facebook or on here. Hope things are OK.

Well, gotta run! Have a great day everyone!
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Old 02-01-2013, 04:48 PM   #708
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Hey Julie, I didn't post because it looked like the thread was closing down again

How funny you said "only in Ohio". We say the same thing here in Colorado. I heard it said about New York, too. I guess we all think we are the only location that does that, LMAO. I don't remember you guys closing down because of Sandy. Dang that hurricane. I think they should have named it something else . Tyler and Joey's school was closed yesterday. It seems they are always closed or on a late start. It's a joke between Stacey and I. Do you guys have any vacation plans? I forgot to address something you said awhile ago. It would be fabulous if we vacationed together in Cozumel sometime.

Tyler is going in on a video EEG next week. They are checking what his brain is doing while he is being naughty. I just wish we could get our Tyler back without seizures and behavior issues. It's so hard to remember a happy little boy that turned into what he is today. I pray we see that change!

Denine, how is Kaleigh doing with her gluten free diet? I bet it's hard trying to figure it all out. I know it was for Tyler when he was on the Ketogenic diet. Are you planning to go gluten free yourselves?

Our trip was fabulous. I was so happy that Heidi and Chris could go with us this year. I wanted them to meet our friends. I was also happy that they got to go to their house for real Mexican cooking. This family means the world to me and I think Heidi would agree that they love us just as much. I found out that the Mexican govt refused their VISA application. They want to come for a visit but the Mexican govt told them that there are too many in the US, LOL. They can keep trying for four years. I was happy they could experience our favorite resort and meet the people we talk about. I think they could definitely tell the difference from being a member to a regular hotel guest, hehe. We hired a taxi for the day so we could show them the island. We went to Punta Sur, the lighthouse, and climbed the 133 steps up to the top. The views are spectacular. We then drove the east side and stopped along the way for pictures. Unless a person tours the East side, I don't think you can truly grasp the beauty that Cozumel has to offer. We stopped at Coconuts Bar and Grill which is the highest point on the island and ended up in town for lunch and shopping. I tell ya, I was the sorest that I have ever been after those 133 steps up. I suffered for DAYS with sore calves. A "Norte" came in on Thursday which is a storm that comes from the North and with it comes some rain but mainly strong winds. It stayed cool for our last week. I'm guessing you saw my post about eating dinner in town one night and seeing and hearing the Fantasy as it left port. It was an experience I'll never forget. One year, we flew into Cozumel low and right over the Magic. It was another one of those goosebump moments.

Barb, so wuz up? Haven't seen you around Facebook much or even on here. Hope all is good.
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Old 02-02-2013, 04:18 PM   #709
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Hey everyone.
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Old 02-04-2013, 09:19 AM   #710
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I'm here, I thought the same as my mom.

Julie - Thank goodness I did not have to go to Vegas for work. I found out last minute they cancelled it. Nothing is more stressful than being gone for a week on vacation, come back for 4 days to work and then be gone another week! Catching up is always a nightmare.

Denine - How is the new diet working? How is Kaleigh feeling?

Anyone watch the SuperBowl? I thought it was a good game. I wanted the Ravens to win so there was a reason why we lost to them in the playoffs, lol. I would hate to be the parents of the coaches. Happy for the one who won and sad for the one who lost but proud they both made it to the SuperBowl!
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Old 02-06-2013, 05:45 PM   #711
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Denine and Julie, we MISS Cleveland. Tyler was sent for a 3 day video EEG just like we get in Cleveland. I walk in and both Stacey and I said (quietly, lol) this is NOT Cleveland. The camera, everything was NOT Cleveland. The seizure button that you have to push when he has a seizure to mark the EEG was even't on the bed. You had to get up, walk around the bed and hit it. Then they released him after 18 hours. Yep, 18 hours. How in the heck can they get any idea what is going on????????? They said to get in contact with Dr Tuxhorn in Cleveland. WHAT??????? Sheez, what a waste of time and poor Tyler had to go through the pain of getting the sensors on and off. Sorry, I just had to blow up here.
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Old 02-07-2013, 08:31 AM   #712
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Mom - So frustrating. I was reading on Stacey's comments that quite a few people are unhappy with Dr. Parks. I see more trips to Cleveland soon!
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Old 02-07-2013, 12:38 PM   #713
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OK, this is my third time typing this... every time I type a response, I must hit a wrong button and everything I type disappears and they when I try to "go back" it takes me back to the "post page" but everything I wrote is gone..... ANYWAYS....

Sandy, that MUST be so frustrating to say the least!!! They didn't give you any reason why the 3 day test was only 18 hours? Sounds like to me that they were unequipped to handle it. I feel for all of you! You know you are always welcome here in Cleveland!!!!

Heidi, so glad you didn't have to go to Vegas by yourself. That would have been so boring and lonely!!!

Barb, love some of the pictures that you and Jaymee have posted on facebook!! Are you guys cruising soon? Or do I have my people mixed up?

Well, I spoke with Jerry on Sunday. They all are having a VERY hard time with Kaleigh. She was suppose to start feeling better after she went on the gluten free diet after a few days, well she isn't. She is now off anything dairy and soy as well. Nothing is helping with her pain I guess. Jerry said she did OK on the drive down to Washington and Virgina after Christmas because she slept most of the time. The way back after the new year, was awful, they had to stop at every rest stop because she was in pain. They don't do much except take her to softball practice where she cries a lot because of the pain when she hits or throw the ball, but she still wants to practice. They are all very down, we asked them if they wanted to come over for the Superbowl and they didn't because they said long rides in the car are not good for Kaleigh. They just feel helpless. I told Jerry all parents feel that way when they child is in pain. they have done all they can do right now and it's just gonna take time. I told him that the best thing for them TO DO is to try and go do something. Hanging with family or friends can do wonders, try and boost your spirits. So who knows when we will hear from Denine. If we do, I'll keep you posted!

Well, gotta run! have a great day!
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Old 02-07-2013, 04:42 PM   #714
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Oh Julie, your post about Kaleigh made me tear up. I feel so bad for all three of them. It has to be rough. Please let them know that I care and if I can do something I'm here.

About Tyler, he was having non stop myoclonics when admitted. I know it and so does Stacey. When he asked me to snuggle with him in his bed I could feel them. Another clue is when he is closed fisted. And guess what, he had his little bitty hands clenched in a fist. Anyway, the following morning they told Richard that there was no seizure activity on the EEG. Richard asked about the myoclonics and they said, well, they are so minor that they don't show up. Maybe yes, maybe no but none the less, he was having them NON STOP. They told her to contact Dr Tuxhorn in Cleveland. That's it. Grrrrr!!!!! Ever since the first visit to Cleveland she and Tyler have been treated like dirt. Denver wanted to video EEG to see what his brain was doing during bad behavior. Well, he was being a good boy. Never had a chance to act out. It was only 18 hours and most of it was while he was SLEEPING. Oh and guess what I learned yesterday. All meds that Dr Park here in Denver ever prescribed Tyler he no longer takes. He is strictly on what Cleveland has put him on. He really is doing very good with the seizures since Nov. Definitely NOT seizure free but sooooo much better. Thanks for letting me vent.

Julie, it's soooo frustrating when you type a long post and it disappears. You were very persistant. I probably would have given up. Are you guys suppose to get the snow and cold that is head to the northeast? We got beautiful rain last night and then it turned to snow. It's melted now. We are expecting 1-7" Saturday night to Monday morning. Hoping for the 7" but I don't drive in it, LOL. I also don't shovel anymore since I bruised my lung.
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Old 02-11-2013, 09:35 AM   #715
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Julie - Thanks for letting us know about Jerry, Denine, and Kaleigh. I hope they take you up on your advice and go visit with some family and friends for a boost. My thoughts and prayers go out to them. I was thinking about the same thing my mom was, if the storm was supposed to hit you guys.

Mom - Thankful for Cleveland. Sounds like it was a good move on Stacey's part to get a second opinion. The people here are being punks.
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Old 02-11-2013, 04:10 PM   #716
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Hey guys,

Heidi, Stacey is talking to Adina (sp) today. I can't WAIT to hear what she has to say.

Julie, what's new with you?

Remember that my sister passed away in late Oct? Well, her daughter, my niece, had a heart attack yesterday. Sheez, that poor girl (woman) can't catch a break. When she was two she fell out of a two story apt right on her head. She did fine until after high school and had a brain lesion. They did brain surgery and it caused uncontrolled seizures. She became a recluse at that point. She isn't allways "there" now and can be like a small child. Heartbreaking and now a heart attack.
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Old 02-11-2013, 05:08 PM   #717
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Sandy, so sorry to hear about your niece! you are so right that she can't catch a break. Poor thing! Is she close by to you? How is Tyler doing? I know things didn't go as planned when he went in for the EEG. Has Stacy spoke to anyone from Cleveland? Keep me posted on that!

Heidi, you new puppy is adorable!!!! She looks like she is getting along with the Lily very well! That is such great news. Hopefully they will be bestest of friends!!!

Nothing exciting around here. Things are sorta calm right now. We are going to have Garry's family birthday party this Sunday. The kids have monday off for president's day. After that, next month Makenzie starts track. She will have practices everyday until the meets begin which are usually in April.

Haven't heard anything from Denine and Jerry. I get the feeling they don't want to "socialize" with us. I tried. Hopefully Kaleigh will get some relief soon and maybe they will want to do something with someone.

Barb, Oh Barb!!!! Where are you Barb????!???!???!????!?????!

Well, that's about it right now. I will keep you posted on anything new!! TTFN I'll keep checking back!!!
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Old 02-11-2013, 05:17 PM   #718
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Hey Julie, sooooo good to hear from you. We need to talk more . How does Makenzie stay in shape in the winter? I can't believe that you actually wrote that things are calm right now. Don't you know that will be a jinx? I'll cross my fingers it stays that way. The Adina I talked about in my last post is from Cleveland. I can't wait to hear what they think about the 18 hour video EEG. Did I tell you about a video about medical marijuana for a boy that has the same Doose syndrome as Tyler? The video is unbelievable. This boy has turned into a human again. It also talks about a girl that has a different epilepsy diagnosis. Her case is even more amazing. I kind of wish that Stacey goes that route with Tyler.
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Old 02-11-2013, 06:58 PM   #719
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Quote:
Originally Posted by jiminyC_fan View Post
Did I tell you about a video about medical marijuana for a boy that has the same Doose syndrome as Tyler? The video is unbelievable. This boy has turned into a human again. It also talks about a girl that has a different epilepsy diagnosis. Her case is even more amazing. I kind of wish that Stacey goes that route with Tyler.
Sandy says... "anyone else have the munchies?" Party at Tyler's house! Boy he sure has alot of friends!

Just kidding! With all the kidding aside, I really hope they find something that will work for him!!!

Kenzie has run a little, but she will have to make up for the time lost. I know it sorta bugs her dad and I that she took off time because we know what her potential COULD be if she just kept at it. We shall see. Hopefully it won't take too long to get back into that shape she was in and her endurance is back where it should be. I hope she will improve, but not running much over the winter.. it's gonna hurt her. Oh well, lesson learned for her, right?
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Old 02-11-2013, 07:46 PM   #720
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Ya, in a way I see her side of it though. How many months does track take up? Maybe she needs a break so she doesn't burn out. I never thought about training for track during winter until Makenzie started doing track.

I am back on my diet so no party for me at Tyler's house, hahaha. I remember asking Stacey if that part of the marijuana is in it but forgot what she said. I just know the hallucinating part isn't in it. I think it's CBD or something like that. Dr Tuxhorn in Cleveland doesn't know enough about it to say yay or nay.
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