Monday, September 18, 2006


This has been such a good day. We had just one outing to see Katy’s family doctor. It was a good meeting. Dr. Linick has been Katy’s doctor for several years. She has helped with colds and sore throats, but we haven’t seen her since all the HPS symptoms started. Since she will be following Katy’s care we were encouraged when she brought to the exam room a 21 page report from the internet she had printed out about HPS to familiarize herself with the disorder.

Tonight we begin cutting the pain medication by half. We are hoping for an easy transition through the withdrawal process and praying God’s mercy over Katy. We have seen His hand in so many wonderful ways. It is a great feeling to trust Him for another detail!

Katy is stronger every day. The home health care nurse saw her again today and exclaimed over how great she looked over last week. Last Sunday, Katy barely made it up the stairs. This Sunday she went up and down 4 times throughout the day. Our friend Cathy Lauver left a comment a couple of weeks ago that “baby food and baby steps go together.” I have reminded Katy of that several times. We are seeing more and more that baby steps become strides in no time with prayer and persistence.


  1. Karen Tillman Says:

    I am elated about the news of your doc being so interested in HPS!!! I am also amazed everytime I read your blog at the progress you have made. Keep up the good work!!! I will continue praying for your strengthening, and that the withdrawal process will go off with little or no trouble. Take good care and hang in there chickie!!!
    Karen Tillman
    Regional Coordinator, Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network Inc
    NC phone #: 336 954 3604
    NY phone #: 1 800 789 9477
    my email: