onceagain1
Mouseketeer
- Joined
- Aug 30, 2012
- Messages
- 85
Hi everyone,
Reading other PTRs made me want to create our PTR sooner than later so here's a bit of info about us.
I'm married with 2 beautiful girls. My oldest daughter is our wish child and has a complex heart defect, has had 3 open heart surgeries that are palliative in nature. She had her surgeries quite young, at 5days, 6 months and 3yrs old, but will need more at some point in the future. Likely she will also need a pacemaker, and at some point, a heart transplant. She is now 6yrs old and doing quite well, all things considered. I call her Chatterbox!!
She's now a big sister to her 2yr old healthy little sis, who we call Busypants who thankfully has relatively no health issues. She may be a bit delayed in speaking but seems to understand quite well, though may have some hearing loss issues. We'll see ENT soon, but pretty small potatoes compared to what we've already been through.
Several years ago we applied for my daughter's wish with Children's Wish, as they encouraged us to, as there were sometimes other events that ODD might be invited to from time to time. Now that things are stable, and that our younger daughter has gotten a bit older, we're ready for ODD to have her wish, so I contacted CW to let them know and they got started on the process. I gave them several dates around Christmas (as my husband has more time off at Christmas, and for financial reasons, it's best for us to work with his schedule). They called and gave me 2 of my 3 date choices to choose from and initially I went with my first, which is right over Christmas. But then I started googling and realised that it would apparently be super duper busy that week. At that point, I had not found this forum and did not know that you could show the pin/lanyard and likely use the fastpass entrance. And so knowing that my daughter (and hubby) isn't always best around the largest crowds, I called CW back the same day to ask about the other date instead. The other date is Dec 14-21, the week before, which still fits our timeframe but hopefully will be somewhat less busy. So those are the dates for us.
Now, I've since discovered this forum, and part of me wishes I could stick with our original dates, as it would be quite magical to enjoy Christmas there. However, I'm reminding myself that the diminished crowds will make the experience more enjoyable for ODD (and hubby and YDD), and it will still be Christmas magical.
Children's Wish volunteers came to visit us a few days ago to get all the paperwork signed. They also brought Roary the Lion who is the Children's Wish mascot. Chatterbox was super excited to see him. And as I heard he might be given to her, but that he was only for the wish child, I checked in our basement (where I recycle our toys in and out off) and found a bear for YDD, Busypants to have when Roary arrived. Worked quite well, both kids were quite happy. I also noticed that Chatterbox was the one who first wanted to make sure that her little sister received something when she did - so sweet of her to think of little sis!!
Anyway, rambling a bit, thanks so much for reading. Now hopefully I can link this up properly. And add a few pics at some point too.
Oh, and one other thing, I just love the dancing banana icon, seems so happy, seems to be a good choice to go with the happiness we feel about Chatterbox's wish!!
Reading other PTRs made me want to create our PTR sooner than later so here's a bit of info about us.
I'm married with 2 beautiful girls. My oldest daughter is our wish child and has a complex heart defect, has had 3 open heart surgeries that are palliative in nature. She had her surgeries quite young, at 5days, 6 months and 3yrs old, but will need more at some point in the future. Likely she will also need a pacemaker, and at some point, a heart transplant. She is now 6yrs old and doing quite well, all things considered. I call her Chatterbox!!
She's now a big sister to her 2yr old healthy little sis, who we call Busypants who thankfully has relatively no health issues. She may be a bit delayed in speaking but seems to understand quite well, though may have some hearing loss issues. We'll see ENT soon, but pretty small potatoes compared to what we've already been through.
Several years ago we applied for my daughter's wish with Children's Wish, as they encouraged us to, as there were sometimes other events that ODD might be invited to from time to time. Now that things are stable, and that our younger daughter has gotten a bit older, we're ready for ODD to have her wish, so I contacted CW to let them know and they got started on the process. I gave them several dates around Christmas (as my husband has more time off at Christmas, and for financial reasons, it's best for us to work with his schedule). They called and gave me 2 of my 3 date choices to choose from and initially I went with my first, which is right over Christmas. But then I started googling and realised that it would apparently be super duper busy that week. At that point, I had not found this forum and did not know that you could show the pin/lanyard and likely use the fastpass entrance. And so knowing that my daughter (and hubby) isn't always best around the largest crowds, I called CW back the same day to ask about the other date instead. The other date is Dec 14-21, the week before, which still fits our timeframe but hopefully will be somewhat less busy. So those are the dates for us.
Now, I've since discovered this forum, and part of me wishes I could stick with our original dates, as it would be quite magical to enjoy Christmas there. However, I'm reminding myself that the diminished crowds will make the experience more enjoyable for ODD (and hubby and YDD), and it will still be Christmas magical.
Children's Wish volunteers came to visit us a few days ago to get all the paperwork signed. They also brought Roary the Lion who is the Children's Wish mascot. Chatterbox was super excited to see him. And as I heard he might be given to her, but that he was only for the wish child, I checked in our basement (where I recycle our toys in and out off) and found a bear for YDD, Busypants to have when Roary arrived. Worked quite well, both kids were quite happy. I also noticed that Chatterbox was the one who first wanted to make sure that her little sister received something when she did - so sweet of her to think of little sis!!
Anyway, rambling a bit, thanks so much for reading. Now hopefully I can link this up properly. And add a few pics at some point too.
Oh, and one other thing, I just love the dancing banana icon, seems so happy, seems to be a good choice to go with the happiness we feel about Chatterbox's wish!!
She is also a Heart Warrior. She was born with Transposition of the Great Vessels and like your dd will need more surgeries in the future. Can't wait to read more on your planning and excitement
And because I love them too - 
I am sure Miss Chatterbox will have lots of fun helping you choose pictures for it
(<---"yay" smiley is doubling as a jumping jack smiley for now).
