Hello to all! We’ve had a very busy time since we last wrote. The fund raiser done in March of this year- Terrance Simien Creole Party was a huge success. Thank you for all who attended, and a gigantic thanks to John Hicks and all of his coworker’s at Waterstone Financial (Rick’s employer) and those people who worked to make it happen. The kids were there- Sophie had a blast seeing old and new friends, and Billy was a hit playing the washboard on stage. We had hoped for a fall fund raiser, but as you read this newsletter, you’ll see our days have been too full of change to organize it.
Unfortunately, ’02-‘03 was not a good winter for Sophie. She was plagued by illnesses that tipped her system enough to go to the hospital on 3 different occasions. The doctors at Loyola and those wonderful nurses and staff members helped us through the long days and nights. We keep “tweaking” the way we care for her and at this writing we’ve had a good summer. One of the key things was the availability of IV drugs that we could administer from home- along with the doctors being more comfortable with us managing these things. As we head into the fall and winter, seasons that Sophie has particular trouble keeping healthy, we hope the new treatment system will keep her out of the hospital unless it’s really bad. In late August, we started Sophie with a Homeopathic M.D. group. We hope the homeopathy will complement her conventional medical care, while helping to boost her immunities to help her fight off the mild illnesses that can get so ugly for her. Time will tell. We did end up at the hospital for a short visit- only 8 days- in September. We think that Sophie was able to handle this crisis better due to the homeopathic medicine. She is still not 100%, but we are at home which is always best.
One of the things that we did this past year was convince the school district to give Sophie a home tutor. Sophie got the one-on-one teaching that she thrives on. Andrea B, her tutor, was amazing. She was able to help Sophie learn between the sicknesses, and more importantly she helped Sophie learn to love learning again. Andrea was able to incorporate some of the Son Rise/Option tools into her teaching. And Sophie loved it. She still went to her neighborhood school for Music and P.E.. Sophie also continues with her Son-Rise program, in spite of the frequent breaks caused by hospital stays. These interruptions made it hard for her volunteers to keep their schedules clear. Sophie has done two new things this past year- Girl Scouts and Hippotherapy (therapy on horseback,) both of which she loves. As we are still in Oak Park for the beginning of school, we have Andrea for a short time again. And then it’s on to our newest adventure:
Our new home!
As of November 1, 2003 the Pruntys will be at:
Wheaton, IL 6018
We have been searching for over a year to find the right ranch style home at the right price- and we finally found it! We are very excited- Wheaton is a town that Rick grew up in, though it has changed dramatically since his High School days there. We are in the Glen Ellyn school district, which we understand is wonderful for both special ed and regular ed. It is closer to therapies and to many of Jody’s close friends in her Special Needs Moms group. Downside ….it is a bit farther to Loyola than we’d like, but we keep hoping that we will spend less time there. We are eager to get there and set up a new life with a new program and opportunities for both Sophie and Billy.
Two key players in getting this accomplished were our realtor in Oak Park, Marge Patner of Gloor Realty, and Bill Vanek of Prudential Preferred Properties of Hinsdale, who led the search in the western suburbs for us. Marge and Jody spent over a year trying to find a home in Oak Park that would work. Marge has been wonderful in the process of selling our home. Bill has worked tirelessly to find not just one but 3 different homes that would have worked for us, only to loose them for various reasons. Both realtors have lived through some of our more challenging days with Sophie in the hospital while trying to sell our home. We are so relieved to be through those days!!! With all of Sophie’s “stuff” and equipment, along with a 2 ½ year old who makes messes faster than a speeding bullet, changing homes was quite a challenge! Our lawyer, Doug Worrell, spent much time getting contracts to buy ready only to have them fall through. The Pruntys, as many of you know, don’t always do things the easy way! We will miss our neighbors and Oak Park. We have been here for eleven years and the support given us has been so wonderful. Our buyers are lucky to have these wonderful people close by. We hope that our new neighborhood will embrace us as well.
Much of Sophie’s funds have been used to keep Agnesse at Sophie’s side. She has been a Godsend to us during the last two years. She spent many additional hours keeping Billy happy while Rick and I stood watch and nursed at the hospital. Agnesse went with us to visit Rick’s parents, Bob and Eleanor Prunty this spring. Her presence really made it a vacation. She has been Jody’s back when she couldn’t lift Sophie one more time. Her youth and energy help to keep Billy entertained. Oh and by the way, Billy began Speech therapy and occupational therapy this past spring as he was delayed in speaking. He is a star student and will probably “graduate” this fall. As many of you predicted, he is talking up a storm!
Jody was able to take a short break this summer to Florida with her special needs Moms- smaller group, but they had a blast and some welcome respite.
Very rarely have we been able to get out together. We did do a short weekend last spring and had Sophie stay at the CoACH House in Lisle (formally the Respite house). The weekend offered challenges for everyone. Sophie survived and enjoyed her visit there; (They have a really big big screen TV.) Rick and Jody spent most of the time looking at houses in the area while staying at a hotel about 5 miles away. Oh well, it’s a step in the right direction, right?! Billy spent the weekend with his Uncle Bill’s family. He had a blast.
As we approached this new beginning, Sophie’s medical helper Agnesse decided to move on. We wish her well, and hope to see her periodically, as the kids (and us) are very attached to her. We have found a new helper, Margaret. Margaret has a nursing degree from Poland, and has been busy learning about Sophie and her brother. Sophie decided to give her a fast lesson in “Sophie,” as the second week of training Soph went into crisis and was in the hospital. Sophie also showed her what her seizures look like after returning home. And of course, Billy needed Margaret for the 8 days Jody spent at the hospital with Soph, only to consider her “poison” once Mommy was back. They are now friends again after Billy realized Mommy was really back. We are happy to report that Margaret is still with us after her baptism by fire! I guess she likes our “never a dull moment” lifestyle.
Our move west will cause us to lose volunteers. If you are in the Wheaton area, please consider volunteering in Sophie’s play/learn program. Or perhaps you know someone who might be interested? We’d love to have her program up and running as quickly as possible. The new house has the extra room we needed so we could run her program and Billy could still get his naps (though he is about to quit those- darn!) Being one of Sophie’s playroom pals is lots of fun and we will teach you how to do it. It’s a terrific way to help this little girl and to get to know her personally.
As we approach the seasons of Thanksgiving and Christmas, we want to thank all of you for the gifts you bring this family. Without your continued support- be it phone calls, emails, thoughts, visits or monetary gifts, we couldn’t do it without you. Sophie continues to thrive with this world of love we give her. We are humbled by your gifts of friendship and contributions to her fund. These things keep us sane and keep us focused on the better parts of our lives. Thank you all.