June 2000
(Sophie is 6 years old!)

Hi Everyone...

So sorry for the delay in reaching you with the latest and greatest. We had an exciting winter that took up all of our energy and time. More on that later!

First and foremost, THANK YOU, THANK YOU, THANK YOU to all who attended and / or contributed to the golf outing last September. It was a wonderful success that we hope to repeat again and again, (Be sure and see the details of this year's event!) It was so much fun to have Sophie there and see everyone! Sophie really liked the rides on the golf cart the best. We managed to sleep over at the hotel (not an easy feat with all her medical stuff), and the hotel came to the rescue when we discovered that the TV's in the rooms didn't have a VCR. We were up and out early as Sophie was one of the stars in the Fashion Show fundraiser for DuPage Easter Seals, where she gets all of her therapies.

A very special thank you to the golf outing planners, Joel Petersen, Allan Swaringen, Jeff Fox, Bob Many, and Bill Prunty. We know how hard you work, and we adore you for it! Thank you too to all of the workers at the event - you help make it happen so everyone can enjoy themselves. The funds raised this year have helped us to bring the head of the SonRise Program from the Option Institute to our home to help us with the program and with school. We are also making our first BIG trip with Sophie and all her stuff this August, when we go back to the Institute in Massachusetts for additional training. We are also looking at renovating the house to make it more accessible for Sophie, as she now wants to get everywhere!

Now back to what took us so long. Some of you are aware of the excitement we had over the winter. The Saturday after Thanksgiving, Sophie began to have a stomach crisis again. We took two trips to the ER at Rush before we decided that we should stay. Here is the rundown of our winter:
November 27th, 1999, entered Rush Hospital with undiagnosed pain in the abdomen. Admitted to Intermediate Care area due to Sophie's complicated conditions. Test done to attempt to identify the cause of her pain were unsuccessful. On pain killers (Codeine, Atavan, Morphine). Contracted RSV virus in hospital. RSV is a very nasty respiratory virus that turned into pneumonia. Sophie was stepped up to intensive care ICU and ended up on a respirator for six days. She was knocked out by drugs for the entire six days. Sophie contracted DIC (a blood disorder) from the infection, and was given blood transfusions, platelets, plasma (Mom and Uncle Mike gave blood again). Diagnosed with Pancreatitis, enlarged liver, pancreas, and spleen (probably due to the RSV infection, but we will never really know). After getting off the ventilator, Sophie was moved back to Intermediate Care unit. Weaned from Fentanyl pain medication pump. Contracted a central line infection (her central line is the one that she used to receive IV food and meds, it runs directly into her heart). She was treated with IV Vancomyacin (a high power antibiotic). The infection in the line did not clear, so the old line was removed in surgery and a new central line placed near the old site. Sixty-two days after Thanksgiving weekend, on January 28, 2000, Sophie went back home. It was a very long, frightening and frustrating experience.

Words cannot express the gratitude we feel to all who were there for us. Jody had an email group that kept her sane through all of this time. She didn't know she could put her life on hold for 62 days! Sophie, the warrior gal, had a very tough go during the respirator time. We didn't know if she would make it, or if she would end up dependent on the respirator. She, as usual, surprised us all and came through with flying colors. Our neighbors and the volunteers kept the dog, cat, and house in order. One of us would come home at night to find the snow shoveled or a meal in the 'fridge. You love kept us going when we thought we couldn't go on. Thank you.

Sophie is doing great now...she has lost a lot of weight and stamina through this ordeal, but as of right now she is almost back to her "normal". One of the most wonderful things that happened while she was in the hospital came from her kindergarten classmates and teachers. They kept us up to date with what was happening at school. Sophie received lots of cards, pictures, and videos of her classmates doing their normal daily stuff. CI a a wonderful group of kids, parents, and teachers that really kept her in their thoughts and helped us keep in touch. She spent her birthday, Christmas, and the New Year in the hospital this year. We hope that this was the last time she will visit Santa in the hospital. We told her that it is customary to visit Santa at the Mall, not in the hospital.

We decided after much thought and energy that Sophie will go into the first grade for part of the day this fall. We will continue her one-on-one program training the rest of the day. She does very well in a one-on-one, FUN environment. We feel that she will be more able to keep up with her classmates with focused energy in her playroom. It was a difficult decision, and we will be constantly monitoring her progress for changes. Sophie's school has been very accepting of our needs, though this next year is full of new changes in staff. The attitudes of her teachers, assistants and support staff are the key ingredients to provide a successful school experience.

Here Are Some Of The Wonderful Things...

that with your generosity we were able to provide for Sophie in 1999:

  • We did get the enclosed bed for Sophie. It feels like a canopy bed and Sophie loves it. We sleep so much better knowing that she is safe in it, and cannot fall out with her central line. We were able to purchase it immediately and then submit to insurance... this helped us avoid delay in receiving the bed, while approvals go through. The money was then put back into the fund. This is the kind of thing that can make you crazy when your kid needs something immediately and you have to play the waiting game. Sometimes waiting can mean the difference between a healthy kid with sane parents, or lots of problems!
  • Sophie now has a Dynavox talker to help her communicate with everyone. We are still learning all about what wonderful things it can do, and insurance did cover this item.
  • Your contributions also helped us with items that are not covered by insurance such as: nursing, balances on medical bills, physical and occupation therapies the last part of the year not covered, supplies and advertising for the playroom program, and family counseling.
  • In October of 1999, we were able to invite the director of the SonRise Program at the Option Institute to look over our program and make suggestions for Sophie's School. It was a wonderful two days, filled with information and helpful suggestions that have really helped Sophie at school this year. We determined as a team that it was time to really focus on sign language and the use of Sophie's talker, as this kid really is trying to tell us things. There is so much going on I that little head. The Option Institute does not typically recommend sign language; but as usual, our unusual gal gets unusual treatment. Option Institute's philosophy and teaching is very powerful: they always look to the child for solutions.
  • We have decided recently that with all that Sophie is accomplishing, it would be an ideal time to go back to the Option Institute for one of their "Intensive" training sessions. Sophie has changed so much since our first stay at the Institute, and her challenges are different too. We are looking forward to the high energy and the creative ideas from the fantastic SonRise staff! They are amazing! Your contributions are helping us to go back. It will be like moving an army with all of her medical stuff, but we felt we are up for the challenge of traveling with her at this time (we'll get so good at it maybe we can visit the Grandparents soon!)
  • Once again those great guys are at it again... please see the information on the Annual Golf Outing, Dinner, and Raffle/Auction for Sophie. Set your calendars for Friday, September 15th, 2000.
  • That same weekend (again!) Sophie will be in a fashion show for DuPage Easter Seals (DES). Sophie gets her therapies at DES. We are happy to support this fundraiser for all of the things they have helped Sophie accomplish over the years. If you are interested in attending (Saturday, September 16th, at the Drury Lane in Oak Brook Terrace) please call us!
  • One last bit of news...it seems that the Richard Prunty family will be having an addition to the family late this year. It's still early, but things look good! Are we crazy or what?!?! (OK, don't answer that!)

Again, as always, we want to express that you all are such wonderful supporters of our family. We constantly tell people that the only way we can make it through is knowing that there is this amazing group of people who are always there for us. Sophie has touched so many lives and we are the richer for it. Thank you all again for everything you do. You may think it is a small thing, but as we have learned over the years, the small things can mean the world to us.

We love you all,

Rick, Jody, and Sophie

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