After much heartache and heartbreak

[livndisney]

I am so glad to hear your daughter is doing well!

 

[needtogomore]

An update. It's been 2 1/2 years since that horrible prognosis. We just had another checkup, and DD is doing great. The doctor didn't have a lot to say, just bring her back in another year. Meanwhile, DD is enjoying life. She is linedancing still. She is part of a club that entertained at 2 local fairs and it was very well received by the community. She danced every other dance, and rested in between. Every day she still begs to go back to WDW, and every day I check prices and think about it. Several times a week she has lunch with the seniors and then plays cards with them in the afternoon. Those painful memories are slowly fading away and being replaced with sunnier times. Please give yourself a hug. You helped me through a black time and I am forever indebted to you.

let us all know when your going again

 

[maroo]

This thread has simply made my day!

I read it all the way through and was so afraid of what I may find at the end of it.

But she is healthy...doing well! Your trip reports are fantastic!!! I am so glad that you have had so many special trips and that the magic of Disney is still in full force!

Thank you so much for sharing your story with us and keeping everyone posted. This is just fantastic!

 

[hopefor4]

I think it is a great idea to call Disney. Be sure to talk to a supportive CM. If you don't get one first time, hang up and call back. I think they will be able to advise you a bit, and help ease your stress. Where you are doing this the first time, they have done it many times before.

I wish you all the best, and wish you a wonderful trip!!

Also, I think I would talk to Make A Wish as they will likely be a very good source of information with helpful tips.

It can't hurt to ask!

Michelle

 

[DisneyFairytale]

Dang it! why do I read these while at work.... I always end up crying regardless of the ending. So happy to hear she is doing well and that her trip was a success. It definitely made me realize how much I take for granted in my life.
Wish you all the best in the future perhaps another Disney trip

Sending all my love to you fellow Canadian

 

[Twende]

What wonderful news!

Some of it just has to be that special magic stuff that Disney pumps into the park air! Keep enjoying your life and here's to years of your DD enjoying hers too!

 

[pampam]

let us all know when your going again

We are going again. In January.

We had another visit with the cardiologist. These visits are so depressing.

However, DD is doing fine, and very excited about our next trip. Every chance DD gets she looks through photo albums, travel brochures, and DVD's to plan and tell me what she is looking forward to.

I truly wish I could give each and every one of you a big hug. You've been so kind and supportive, when I needed you most.

 

[livndisney]

We are going again. In January.

We had another visit with the cardiologist. These visits are so depressing.

However, DD is doing fine, and very excited about our next trip. Every chance DD gets she looks through photo albums, travel brochures, and DVD's to plan and tell me what she is looking forward to.

I truly wish I could give each and every one of you a big hug. You've been so kind and supportive, when I needed you most.

Glad you got a good report and happy to hear you are headed back to Disney.

 

[peemagg]

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.

 

[cm8]

We are going again. In January.

We had another visit with the cardiologist. These visits are so depressing.

However, DD is doing fine, and very excited about our next trip. Every chance DD gets she looks through photo albums, travel brochures, and DVD's to plan and tell me what she is looking forward to.

I truly wish I could give each and every one of you a big hug. You've been so kind and supportive, when I needed you most.

 

[pampam]

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.

 

[weswife]

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!

 

[peemagg]

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.

 

[pampam]

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.

 

[visitingapril09]

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.

 

[pampam]

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.

 

[livndisney]

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 .

 

[mom2rtk]

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!

 

[SueM in MN]

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.

 

[pampam]

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.