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Old 11-25-2010, 04:41 AM   #91
pampam
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Originally Posted by peemagg View Post
When in January are you heading to WDW? I'm asking because we will be there from Jan 26-Feb 3.

It is great to be able to plan another trip and have something fun to look forward to.
We will be there from Jan 13 to Feb 5. I know it sounds like a long time, but we really have to pace ourselves.
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Old 11-25-2010, 07:22 AM   #92
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Hi,

I am glad you are planning another trip! I read every post and now have tears running down my face. Your love for your DD is strong! Disney is amazing!

My DD has alot of health issues and uses a chair fulltime. In 2007 she was very ill and doctors gave her 48 hours. It was the most difficult time of our lives! I still tear up when I think of it. Fast forward to 2010 and she is here beside me as I read all of the posts to her! She enjoyed hearing about all of the dresses!!!!My DD is 17 and LOVES Disney! Her eyes light up just saying the word!

Enjoy!
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Old 11-25-2010, 08:53 AM   #93
peemagg
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Quote:
Originally Posted by pampam View Post
We will be there from Jan 13 to Feb 5. I know it sounds like a long time, but we really have to pace ourselves.

Well if you see a gal around 41 with a red scooter and forearm crutches with blue, tiger striped covers on the cuff, and an older woman walking along beside her. Please stop and say "Hi". I like to meet the people I talk with on here. It's nice to put a face with a name.
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Old 11-25-2010, 03:52 PM   #94
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Originally Posted by JohnnySharp2 View Post
If you want to recieve and send pm's just go into your 'user cp' section at the top of the screen, and 'edit profile', ensure 'enable private messaging' box is ticked.

Then to send someone a message just find their name say in a thread like this one, ie JohnnySharp2, click on the name and the send a private message option appears. Then onwards it's straight forward.

For pictures you need to register at a free photo hosting website such as photobucket.

http://photobucket.com/
O.K. I've registered on photobucket. Now, please walk me through this step by step, remembering I'm self taught and have a fool for a teacher.

I tried to put my photopass cd on it but . I don't think it's there. Go slow, and please be patient with me. I'll try to share Pictures if I can.
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Old 11-25-2010, 06:30 PM   #95
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Originally Posted by pampam View Post
we can plan another trip. I know I haven't posted much lately, but I have had so much on my plate. Today I feel much better.

My sweet DD, as you may recall, has a myriad of health problems. A year and a half ago, we were planning a trip to WDW when she collapsed. Another full faint with secondary seizure symptoms. She was put on oxygen, and the dr wouldn't allow her to fly, so we canceled that trip. Eventually, the dr said she could travel, so we booked another trip. It was a whole new ballgame, because she is now on oxygen, and although we have been to WDW many, many times, the oxygen was a new experience for us. Still, we were optimistic, until she collapsed again in March. This one was different. I thought she was dying. I'll never forget it. It was horrible. The dr told us that she had a year left. Broke our hearts. By August, the dr more or less said if we want to take her ok. She could have troubles there, she could have troubles at home. Go, make some memories. She really wants to go back to WDW. It's her happy place. So, I was hoping to plan a trip, but the oxygen is such a struggle. Until I experienced it, I just didn't realize the logistics of it. We live in Canada, so it complicates things. Air Canada charges $300 for oxygen on the plane. I will have to rent a concentrator for oxygen in the hotel room $100. Each cylinder we rent is $35. If we use 4, it's $140 a day. We were hoping to stay 3 weeks, because she sleeps all afternoon, and it takes us longer to do things. Wow! that's a lot of money!! Now the big problem! We have to be at the airport 3 hours ahead of time. We cannot take cylinders on the plane. It isn't allowed. So, we need oxygen at the airport in Toronto, and once we land. The charge for that is $150 for them to clear customs and meet us at the gate with oxygen, and it's usually just not done. The only other solution would be to get a portable oxygen concentrator (POC). It would cost another $7000 with all the extra batteries and battery chargers. It just seems to get more and more complicated.

However, yesterday I got what I believe could be wonderful news. Our oxygen provider is considering getting a (POC) and we can rent it, or they may even loan it to us. They borrowed one from another office, and tested my daughter on it, to see if it would meet her needs. It tested better on her than they expected. I know it' s too early to celebrate, but I am soooo pleased.

So, please help me plan a trip of a lifetime, and I do not use that term loosely. I know it will be her last trip, and I'm certain it will be mine. I just can't imagine WDW without her. Any ideas, or suggestions.
My son uses a poc when we travel also. We are in BC. We rent it from Medigas and it works well. We just take a couple extra batteries.
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Old 10-29-2011, 11:41 AM   #96
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OP here.

We got some good news. DD had her check up with the cardiologist, and she is the same as last year. I know that may not sound like much, but to us it is truly wonderful news. In this system, it's as good as it gets. So, I phoned WDW reservations today and made some reservations for POP from Jan 12 to Feb 3 2012. DD is elated. I still have to arrange for oxygen in Fla , but I don't anticipate any problems. We have arranged for a POC for our flight, and made reservations for the flight as well. I know its 3 months away, but I feel like packing now.

A lot of water has gone under the bridge since we recieved that terrible diagnosis. The cardiologist was wrong. I wish we never had gone through that terrible time, but at least it's history now. DD is thriving. I was even able to reduce her oxygen from 7 lpm to 4. I just wanted to share our joy with you all. Now, every day is a celebration.
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Old 10-29-2011, 11:43 AM   #97
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Originally Posted by pampam View Post
OP here.

We got some good news. DD had her check up with the cardiologist, and she is the same as last year. I know that may not sound like much, but to us it is truly wonderful news. In this system, it's as good as it gets. So, I phoned WDW reservations today and made some reservations for POP from Jan 12 to Feb 3 2012. DD is elated. I still have to arrange for oxygen in Fla , but I don't anticipate any problems. We have arranged for a POC for our flight, and made reservations for the flight as well. I know its 3 months away, but I feel like packing now.

A lot of water has gone under the bridge since we recieved that terrible diagnosis. The cardiologist was wrong. I wish we never had gone through that terrible time, but at least it's history now. DD is thriving. I was even able to reduce her oxygen from 7 lpm to 4. I just wanted to share our joy with you all. Now, every day is a celebration.

I am so THRILLED for you!!! I know you must be on .
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Old 10-29-2011, 11:46 AM   #98
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Quote:
Originally Posted by pampam View Post
OP here.

We got some good news. DD had her check up with the cardiologist, and she is the same as last year. I know that may not sound like much, but to us it is truly wonderful news. In this system, it's as good as it gets. So, I phoned WDW reservations today and made some reservations for POP from Jan 12 to Feb 3 2012. DD is elated. I still have to arrange for oxygen in Fla , but I don't anticipate any problems. We have arranged for a POC for our flight, and made reservations for the flight as well. I know its 3 months away, but I feel like packing now.

A lot of water has gone under the bridge since we recieved that terrible diagnosis. The cardiologist was wrong. I wish we never had gone through that terrible time, but at least it's history now. DD is thriving. I was even able to reduce her oxygen from 7 lpm to 4. I just wanted to share our joy with you all. Now, every day is a celebration.
That is truly awesome. Celebrating at Disney is just icing on your cake. I hope you have a magical time!
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Old 10-30-2011, 01:09 PM   #99
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Quote:
Originally Posted by pampam View Post
OP here.

We got some good news. DD had her check up with the cardiologist, and she is the same as last year. I know that may not sound like much, but to us it is truly wonderful news. In this system, it's as good as it gets. So, I phoned WDW reservations today and made some reservations for POP from Jan 12 to Feb 3 2012. DD is elated. I still have to arrange for oxygen in Fla , but I don't anticipate any problems. We have arranged for a POC for our flight, and made reservations for the flight as well. I know its 3 months away, but I feel like packing now.

A lot of water has gone under the bridge since we recieved that terrible diagnosis. The cardiologist was wrong. I wish we never had gone through that terrible time, but at least it's history now. DD is thriving. I was even able to reduce her oxygen from 7 lpm to 4. I just wanted to share our joy with you all. Now, every day is a celebration.
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Old 02-16-2013, 09:19 AM   #100
pampam
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An update.

We just got back from another trip to WDW and DD is doing great.
I 'm not sure why, but I am being blown away with her progress this past week or so.

She is now on 2 lpm oxygen.

She no longer walks around the perimiter of the room, hanging on to furniture. She walks across the room.

Her gait has improved dramatically. She no longer hitches her hip but bends her knee.

I took her linedancing yesterday, and she didn't want to stop. Even after everyone had left, she was selecting cds to dance to and reminding me of the steps.

I took her dancing last night, and she no longer veered strongly to the right. I was able to lead her around the floor. She used to dance like one leg was shorter but now she stands tall, and dances much nicer.

Yesterday, for the first time, she colour co-ordinated what she wanted to wear. She asked me if the tee shirt was tourquoise. I said yes, and then she mentioned that it would match the hatband.

I gotta say, I'm blown away with what I'm seeing. I don't know if this is temporary, but I'm thrilled.

The last few weeks when we were in Disney, she was initiating conversation with people. This is totally our of character for her, but not completely unusual for her when she is in WDw, her happy place. But now, I get home and witness all these changes in her and simply marvel. I don't know exactly why, but I hope it continues.

When we were there we made some wonderful memories. I modified a dress for her and transformed her into Mary Poppins. Everyone was blown away by her outfit, even putting it on You tube.


http://www.youtube.com/watch?v=RuBgcdMVQa0

I hope the link works. She is at about the 11:07 mark.

Once again she was not eager to come home.

Anyway, I just thoughe I'd share my joy with you. You have all been so kind to me. I really appreciate it.
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Old 02-16-2013, 09:30 AM   #101
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Thank you so much for sharing. Your daughter is lucky to have you on her side.

And you did an awesome job on her Mary Poppins dress!
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Old 02-16-2013, 09:31 AM   #102
livndisney
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Quote:
Originally Posted by pampam View Post
We just got back from another trip to WDW and DD is doing great.
I 'm not sure why, but I am being blown away with her progress this past week or so.

She is now on 2 lpm oxygen.

She no longer walks around the perimiter of the room, hanging on to furniture. She walks across the room.

Her gait has improved dramatically. She no longer hitches her hip but bends her knee.

I took her linedancing yesterday, and she didn't want to stop. Even after everyone had left, she was selecting cds to dance to and reminding me of the steps.

I took her dancing last night, and she no longer veered strongly to the right. I was able to lead her around the floor. She used to dance like one leg was shorter but now she stands tall, and dances much nicer.

Yesterday, for the first time, she colour co-ordinated what she wanted to wear. She asked me if the tee shirt was tourquoise. I said yes, and then she mentioned that it would match the hatband.

I gotta say, I'm blown away with what I'm seeing. I don't know if this is temporary, but I'm thrilled.

The last few weeks when we were in Disney, she was initiating conversation with people. This is totally our of character for her, but not completely unusual for her when she is in WDw, her happy place. But now, I get home and witness all these changes in her and simply marvel. I don't know exactly why, but I hope it continues.

When we were there we made some wonderful memories. I modified a dress for her and transformed her into Mary Poppins. Everyone was blown away by her outfit, even putting it on You tube.


http://www.youtube.com/watch?v=RuBgcdMVQa0

I hope the link works. She is at about the 11:07 mark.

Once again she was not eager to come home.

Anyway, I just thoughe I'd share my joy with you. You have all been so kind to me. I really appreciate it.
WONDERFUL!!!!!! So glad to hear you both had a amazing time!
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Old 02-16-2013, 10:55 AM   #103
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Thank you so much for posting the up date on how the trip went. I really like it when a trip that was planned comes through and we get to hear about it. I appreciate the extra effort you took to come back and report and am glad there have been good things happening.
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Old 02-16-2013, 01:34 PM   #104
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Thank you so much for the update so glad it went well I hope she continues to do great. Disney has a special magic that can be amazing
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Old 02-16-2013, 04:45 PM   #105
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Thanks for updating and thanks for continuing to share your DD improvement with us. How impressive to come from 7lpm to 4 to now 2lpm Keep doing what you are doing.
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