July 1998
(Sophie is 4!)

Howdy Everyone!!

What a Spring!! As most of you know, Sophie has faced a very challenging 1998 thus far. She spent all of February and most of March and April in the hospital. Just last week she spend another four days at the hospital. She has had two surgeries and three ambulance rides. In all, Sophie has been admitted and released from the hospital six times this year. She is on monster IV antibiotics and is happily rocking and rolling at home now. Sophie is currently getting most of her nutrition from a permanent IV line called a Ïcentral lineÓ. This is an intravenous tube that goes directly to a large vein that feeds into her heart. Through her central line ÏfoodÓ (dextrose, proteins, lipids, etc.) and medicine are pumped directly into her circulatory system.

What Happened?

What started as the flu ended up being what the docs call Ïpseudo-bowel obstruction.Ó Although there was no evidence of a physical blockage, her gastro-intestinal system began to spasm and her GI tract shut down. Our Ïgal with a lot of gasÓ had a belly as big as a soccer ball, and emergency surgery saved her life. She spent the month of February in the hospital and was given a cecostomy (this is a hole in her ascending colon) for drainage.

From this visit Soph experienced numerous complications. She had a second surgery. In this surgery she received a G-tube that goes into her stomach. This tube is there to relieve pressure (gas) and for supplemental feedings. At this second surgery, her central line was put in. She is doing great with her new apparatus. We thought she was high-maintenance before!!

Just when you think it is safe to go back in the water÷

This past Saturday (July 18), Sophie had a seizure and her second and third ambulance rides. She was back home Tuesday night. The diagnosis was an infection in her Ïcentral lineÓ. An infection in the area around the heart is just plain terrifying. The seizure is believed to have been caused by a fever spike that accompanied the infection. Once again the people in Rush Presbyterian St. LukeÌs pediatric intensive care unit(PICU) were fantastic! If you have to be really sick, disguise yourself as a little kid and go there. We just canÌt say enough, especially about those nurses!

Speaking of Nursing

Jody has now added the title of full-time nurse to her career, as good oleÌ insurance doesnÌt cover home nursing care. With all of the health care issues being examined by the government these days, Rick is threatening to become a Democrat since they seem to be looking at our needs more closely. Hopefully these issues will be worked out to our advantage before Sophie is in college or Jody needs to be committed.

And the beat goes on!

WeÌre still learning to live with a kid with serious medical issues. Without her central line Sophie wouldnÌt have made it. She has gained over 15 pounds and grown 5 inches! In spite of our recent return trip to the hospital, we are slowly tapering her off the central line and increasing her feedings as her system tolerates it. So far sheÌs doing well, although progress is slower than her docs would like it.

Now that some of the Ïcrisis-managementÓ has tapered off a bit we can finally spend a little time together as a family and continue to strengthen SophieÌs program. She is currently getting home-therapy (less germs to throw her system wacky.) The volunteers ahre also back on their schedules. We as a team continue to challenge her in the playroom and sheÌs doing well!

All of the time Sophie spent lying in bed fostered the concern that she would loose some of the physical progress she had made prior to Hospital-Mania. Fortunately, she has gained muscle mass with the weight. The only glitch has been her back is more rounded from all of the lying around. Where she used to be more floppy, she is now tighter, and this has created a little more of a challenge for her therapists as sheÌs a big, strong girl now.

Thank You! Thank You! Thank You!

As usual, all of you angels out there have been so supportive. We donÌt know how we would make it without all of your thoughts, prayers, time, and gifts. You really are making a difference in a little girlÌs life! Our volunteers have been so incredible - they helped out at home and at the hospital with time and support, and kept us thinking positive thoughts. They have bravely met and conquered their discomfort with SophieÌs new apparatus.

Special thanks go out to Annette, Jill, Jan, Denise, Deborah, Holly and Lori for giving us a few hours of relief at the hospital.(We apologize if we have forgotten anyone!) Our neighbors, the LemanskiÌs once again have helped us each time with watching the house and caring for our dog and cat.

RickÌs parents came up from Arkansas for two weeks to help us. Rick and Jody alternated nights at the hospital, so we really had no time together for most of the Spring. JodyÌs parents helped in numerous ways that allowed us to get away one night and just be a couple. Everyone in the family was blood-typed or donated, and friends in Oak Park kept us supplied with food. RickÌs brothers and JodyÌs sisters and their families have been forever helpful and specialÛthanks, guys.

Finally, a special thanks goes out to Allan Swaringen for helping Rick while Sophie was at the hospital. His help enabled Jody to go to the Option Institute for additional training. Rick had to push Jody out of the hospital room to go to the training (it is only held one time a year.)

Sophie was selected to be a beneficiary of the Mulliganeers fund raiser this Spring. What a fantastic group of individuals! Those Mulliganeers are really making the difference in some childrenÌs lives. We were one of 5 families selected to benefit from their St. PatÌs dinner/fund raiser. Sophie was still in the hospital at that time and Jody was at the Option Institute. However, thanks to some special volunteer help from Annette, Rick was able to attend. These people really know how to throw a party!

As JodyÌs Mom said, Ïit is so nice to know and have faith that the money you send to a group actually gets to the intended recipient.Ó Our portion has enabled us to pay off some very overdue therapy bills. In addition, some accessibility improvements around our house are now closer to a reality. Thank you for your generosity.

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