(Sophie is 10 years old
It’s been a busy 8 months or so since our last newsletter. The new house in Wheaton has been wonderful- to have a ranch home is such a welcome relief from all the lifting. Sophie (and Billy) love to get around to every corner of the house. We have finally got the playroom finished, and Sophie and her tutors (more on that later) are enjoying the new space.
The move was a challenge for all of us. Rick’s parents came up from Arkansas to help us, and as usual, we Pruntys couldn’t do this the easy way. Sophie ended up in the hospital. We were “homeless” for 3 days when the closing on Halloween Friday didn’t go as expected. Fortunately, Rick’s brother Bill and family were able to take in Rick, Billy, our 2 cats, Eleanor and Bob, and various other stuff until late Monday when we were able to get into the new house. Always an adventure! Sophie came home to the new home the same evening, so it was a celebration in many ways. Please stop by if you are in the area, Billy would love to show you around- especially his “spaceship” bedroom.
Christmas and Sophie’s Birthday in December were fun times to get together with family who have been our biggest supporters. Margaret, our new helper (not so new anymore,) has done wonderfully with the kids, and was able to travel with us to Florida this year to see Jody’s parents and spend a couple of days with Mickey and friends. We debated long and hard whether to go to Disneyworld, but we figured that we don’t know how long we will have the little girl- and it truly is “The Happiest Place on Earth” for her. Jody’s Aunt Judy and Uncle Wes let us stay at their home while we do the Disney thing- making it so much easier on us in many ways.
Once again we had a blast with the Terrance Simien fundraiser for Sophie in February. John Hicks, Rick’s coworker and the gang from Waterstone (Rick’s company) did an outstanding job. Held at the “same” bar that had been renovated- Durty Nellies in Palatine, the place was gorgeous, a considerable step up from the year before. Sophie and Billy once again were able to attend, which always makes it extra special. The new Durty Nellies is totally accessible, and Terrance and his band put on a wonderful show. We were able to see Terrance again this summer when he performed a show for kids at Fitzgeralds in Berwyn. Thank you to all who attended and especially to everyone who worked to make it happen- you guys are the best!
Our winter, spring and summer have been challenging for Sophie health-wise. Though we have “tweaked the system” to stay out of the hospital most of the time, Sophie continues to be “edgy” almost all of the time. This is pretty stressful for the entire family, but we are happy to stay away from the hospital. She is still plagued with frequent stomach issues, and she was having difficulty with her seizures. Only recently we have been able to get them under control without too troublesome of medicine side effects.
It was difficult for the new school system to understand Sophie’s fragile health, and we worked to make the new school successful for her and them. Due to lots of health issues Sophie had poor attendance. By the end of the school year, not much progression was made in Sophie’s education, so we determined that she should have home tutors for the summer. The school agreed, and this summer we have been fortunate enough to have 2 outstanding tutors working with Sophie. These ladies have been able to be flexible with their schedules and with Sophie’s frequent “off” days. Once again we had Andrea Becker, Sophie’s tutor from Oak Park who was able to get Sophie back on track. Chris Gillis, who was Sophie’s pre-K teacher in Oak Park, was able to jump in and plug into where Sophie is at academically. Chris had semi-retired from teaching to raise her own kids and now lives nearby.
Since Sophie’s health is still questionable, we have continued to use home tutoring as the new school year begins. Chris has been able to continue doing a portion of this tutoring, and the district is currently looking for a qualified person to do the rest.
We are still looking for people to help us in the at-home program we do with Sophie. If you or anyone else is interested in becoming a volunteer, please don’t hesitate to call us for more information at 630-260-1924. A few hours a week and a desire to learn and help Sophie are all that is needed.
Sophie and Jody attended a camp for augmentative communication users (that’s her portable computer that ‘talks’ for her) this summer. This 3 day program was an overnight camp that the management was able to ok us just attending daytime. The cooler weather turned out to be a blessing for Sophie since this could have been a big problem for her. While she spent the days there, she was able to use her talker and work on communication skills in an environment that was incredibly supportive. Her health prevented us from being immersed in the whole camping experience, but for what she was able to participate in it was exciting. New friends were made with lots of sharing of information and motivation tools. We look forward to attending it again next year.
If you are looking for a place to send a donation this fall or holiday season, please consider donating to the Sophie Prunty One in a Million Kid Fund. (Fund no longer in existence.) Funds are used directly for items not covered by insurance (such as items for the Son-Rise program, briefs, and health supplements) and to help us with paying for our medical helpers. At this time the Sophie Fund is down to a few thousand dollars. Sophie’s monthly brief and supplements run approximately $400.00. Her medical helper costs $400 per week. You’ll be glad to know that your money goes directly towards the care of Sophie. (Contributions no longer done as Sophie turned 18- she would lose her benefits. )
As the days get colder and shorter, we remind ourselves that we made it through the majority of 2004 with little hospital stays. We are thankful for all of the professionals, friends, and family who have helped us through the difficult times and have celebrated with us this unique life we lead. We are reminded that life is not based on things acquired, but on our quality of this life we lead and the extraordinary people we meet along the way. Sophie’s newsletter goes out to hundreds of friends now, and we wish we could hug and personally thank each and every one of you in person.
All our love,
Jody, Rick, Billy and Sophie