March 1999
(Sophie is 5 years old!)

Well finally...

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.

What A Day, What A Feeling...

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:

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