Hi all! So sorry this has taken sooo long to get out. No big excuses, just life. We hope this finds you all healthy, happy and your holidays were wonderful.
Sophie continues to amaze us all. A kid who has been through a tough year just keeps on going on. She is bigger (48 pounds and very tall) and stronger (packs quite a wallop without meaning to!) Her strength of character is an inspiration to all of us. Let’s catch up…
Since our last news letter in July, Sophie has had 7 more stays in the hospital, a few from central line infections (remember, this is how she is fed and the line goes directly to her heart…very scary stuff,) and a few that were of unknown pain reasons. Yes, the kid who feels no pain (that is, external pain) spent some days with fevers and crunching up her legs in some sort of pain. The doctors never have found a reason for these “phantom” pains. They usually occur strongest in the night, and we and the night nurses at Rush can vouch for their “reality.”
Rick, being the numbers man, calculated that Sophie spent nearly one in four days in the hospital last year…ugh…not a pretty note. We are looking forward to a much better 1999, and so far the stays have been very short. Unfortunately, one of her stays was during the golf outing last September.
The golf outing put together by Rick’s brother, Bill, and our friends, Joel Petersen, Allan Swaringen, and Jeff Fox (along with their families,) was a remarkable success. Some of the participants said that they had been to a few of these type of events, and this one appeared to be a golf outing that had been running for many years. It was that smooth and thought out. These guys poured their guts and love for Sophie and our family into this event. Everyone, and we mean everyone had a wonderful time. Rick was able to attend the golf part during the day, and Jody went to the evening dinner, while the other spouse did hospital duty. We were sad that Sophie couldn’t see all of the fun, and there were many people there who had never seen her. It was very emotional for us to see so many people giving so much…and it was so phenomenal to participate in the fun. This event will be an annual event, so keep this date in mind:
The 2nd Annual Sophie Prunty
“One In A Million” Charity Golf Outing
Friday, September 17, 1999
Indian Lakes Resort, Bloomingdale, IL
1pm shot-gun start
dinner only: $35 per person
(pricing subject to change )
Limited number of players, so reserve your spot soon!
Please call Bill Prunty at xxx-xxx-xxxx for details.
Hole Sponsors are needed….Great Advertising!!
Those of you who said you’d like to help this year…please contact Bill as soon as you can. Thanks!
P.S. We noticed that a lot of the guys came for what looked like a guys day out….hey, gals….you can play in your own groups, and don’t forget—you can always just come for the dinner, we’d love to see you!!
Let’s see…Jody’s Dad had heart surgery in the Summer, and set a goal to play in the golf outing—which he met!! Yeah, Dad!! This Winter we were able to install an outdoor lift in the back of our house. Boy what a difference that makes for us. We were concerned because Sophie is getting so heavy and the back stairs were very steep and narrow. Now we have small deck, wider, less steep steps and the lift. This has helped us enormously—and all thanks to you!
Christmas brought Rick’s parents, his Aunt Marvel (Auntie M), and Jody’s Parents into town. Sophie gave us a worry by taking a trip to the hospital in mid-December, but we were “Home for the Holidays!” Right after her stay, Sophie gave us a gift of learning how to scoot!!! Oh my, does this change our world. She is so proud of herself and the whole world is her oyster now! Mom and Dad see “Danger, Danger!” in all kinds of new areas, but we are sooo excited for her. She was even able to show off her new skill to all of our loved ones at Christmas…it brought tears to many an eye! Those simple little milestones are so amazing from our perspective. As of this writing she appears to be concentrating on being verbal and is very close to crawling. It’s hard to believe that this kid had been so sick for so many days. Her therapists are flabbergasted.
Jody this December noticed in our local paper a Volunteer of the Year request and promptly sent off a recommendation for Alix, one of our volunteers to receive it. Alix was one of 10 people in the Chicagoland area to receive this honor. She was selected from almost 400 applicants…very exciting stuff! We were able to attend the awards dinner with Sophie, Lori (another of our volunteers) and Alix’ family. Alix has devoted most of her young life (she’s the ripe old age of 15) to helping children and peers with special needs. Quite an outstanding young lady.
In March, due to all of your generosity, Rick, Lori and Alix are attending the Maximum Impact training at the Option Institute that Jody and Terri attended last year. It will be great to have all of our volunteers exposed to this wonderful institution! Anyone out there interested in volunteering and learning more?! Give us a call. Pass on our information to others if they are willing to spend some time with our amazing Sophie!
We’ve included the Sophie Prunty Profile for all of you. This is a quick “picture” of Sophie and her history.
We’re looking at getting Sophie a new wheelchair since she has just about outgrown her old one.
Sophie has gotten so big and strong that the very padded up hospital bed we are currently using will not “hold” her much longer…she is almost strong enough to pull herself over the padded railings, and a bed on the floor would only encourage her to move out of it (besides needing the height for drainage purposes.) We are concerned that she will pull her central line from movement (already a concern in the present,) but we chose to have it on at night so she can be more of a real kid during the day. The “bag of food” is extremely heavy for a little girl, and we are constantly trying to figure out how she can move with this line attached. A new bed for her is arriving soon that will enable her to move freely, but stay in the bed… it looks like a canapy bed.
We are looking at an electronic speech device called a Dynavox. This would enable her to “speak” to us regarding almost anything she wants to say. It is an amazing piece of equipment, and the trials on it have been very encouraging. We are hopeful that she may be able to tell us what’s bothering her physically, which would be so helpful!
Finally, we are developing a WEBSITE for Sophie!! Our volunteer, Terri and her significant other, Terry, have put it together for us. You’ll be able to access Sophie’s Website shortly, and we will let you know the key word and how to find it (still in the process of registering…) It will have all kinds of great information (past, present, and future) and we are hoping to even include “Sophie’s Song,” a song written by an organization called Songs Of Love. Songs Of Love writes songs for kids that are chronically or terminally ill, and each song is individually written for each child. This will be great for all of you overseas friends, and we can hopefully keep you updated quicker!
Thank you all for your love and support. This year would have been so incredibly difficult for us without you. Your thoughts, prayers, calls, letters, and knowing you’re out there has given us strength at times when we felt we were at the bottom of our reserves. Family, friends, and life is so very precious. We are reminded of that daily in Sophie’s eyes.
Jody, Rick and Sophie