This message was edited Dec 15, 2005 1:49 PM
A favor to ask...
Melissa,
I've been using a power WC for many years. If she is able to get in the chair by Halloween, she AND the chair can go as an armchair (cover her + WC with fabric or sheet, pin some sofa pillows to her lap) , a monster (make a monster head out of something and attach it on a stick to her head rest, cover her and the chair up), anything is creepy when it's moving by invisible forces. If she can be in a flat WC - gurney type thing, she can be snow white asleep, or a princess on a magic carpet. Also a flat idea, not sure how exactly, but it's the opposite of a costume idea I saw years ago. Make a (headless) body out of old Nylons, stuff it with socks and dress it in baby clothes or toddler clothes. Have her wear a matching turtleneck, cover the rest of her with a blanket, and attach the body so it looks like it belongs to her neck. I'm explaining this badly, but do you see what I mean? If you're terribly clever, put baby shoes on the legs and make it walk. Or maybe it could "sit" on top of her. Depending on her strength etc, she could use her own arms and just the legs could be fake. Then she could use her hands to cross the legs. With a mobile base, you can think of her more like a float in a parade!
xxx Carrie
Melissa, my card is on its way. Yuska
Carrie,
Tori LOVES Halloween, we go all out. Wish i had some of the pics on the computer, maybe i'll have my husband scan some. She was a fairy princess riding a Pegasus unicorn last year, one year she was a cowgirl on a horse... beginning to see a pattern here... LOL She loves horses, unicorns, pegasus etc. and loves to dress up fancy. Funny this year she picked to be a vampire, very beautiful black and purple velvet dress etc. She has lost 8 teeth so far, so she has a great vampire smile, nothing but eye teeth. She makes one very cute vampire!
She has won best costume two years in a row.
Thanks for more fun ideas!
Melissa
Thank you all very much. Satori has been delighted with all the mail. A special thanks to some of you who have gone over the top, you know who you are!
Thank you again everyone,
Melissa
I would like to thank you all again for the lovely cards. She has had a great time with all the mail she has gotten. Everyday now, she asks if the mail is here yet!
When I made this post, my daughter was at home getting over pneumonia and a dislocated hip. She was doing well, but, REALLY bored and my mail request was meant to be light hearted fun.
So, I feel extremely awkward about this…
Many people have D or E-Mailed me asking how she is doing. Again, I just meant this to be a light hearted distraction, for her, and anyone sending her a postcard. I have sent many of you notes to say Tori is well (which she is) but, I have been feeling very bad about that. It seems like since you have all done me the favor of sending her a card, I should be honest.
Her pneumonia is completely gone and her hip isn’t hurting her anymore, but on the follow up chest x-ray taken earlier in the week the doctors spotted something odd. They did a CT scan and we found out that she has a large tumor in her right lung. It doesn't have anything to do with her SMA, and they are thinking it probably isn't cancer, but they won't know for sure what it is until it comes out. Because the tumor is so big it needs to come out pretty much immediately and the surgery will be within the next two weeks.
This has come out of nowhere and is totally unexpected and i am still trying to wrap my brain around it. I apologize again for inadvertently getting you all involved in this.
Melissa
No apology needed, Melissa. She will be in our prayers (as will you!) and we ask that you bring us up to date on her progress as you can find a little time to do so. Yuska
First, I wanted to thank you all so much. Satori has enjoyed everything she has received in the mail so much! Now she asks “What did I get in the mail today” when it comes, instead of “Did I get any mail today.” So many of you have been so kind, we really appreciate it.
Now the icky stuff…
The surgery has been scheduled for Monday afternoon. If she comes off the ventilator well, she should only be in the ICU for a day or two and then in a regular Pediatric room for another few days. They are saying 5 days in the hospital min. She is doing well, she understands it as much as a 6 year old understands such things. We have spared her the more graphic details.
Because I posted the postcard request on a few forums, and people have asked to be updated on what is going on. I am going to start a new thread in the Parking Lot forum. That way I won’t have more than one thread to update. I’ll just title it “Surgery.” I will post a link to it (if I can figure out how LOL.)
Thank you again everyone for your kind words, thoughts, prayers and the wonderful mail,
Melissa
http://davesgarden.com/forums/t/555958/
Hope this works.