Friday, August 25, 2006


It’s Friday morning. I’m going in to work a little late this morning, to give Dawn a chance to get in a good walk in the cool of the day. She has missed her almost daily walks with Linda, her walking buddy of several years, and they have a lot of catching up to do.

Katy had several small meals yesterday, with less associated pain. Walking immediately after eating helps a lot. Maybe we should all adopt that habit. Three jars of baby food, some rice, a bite of delicious bread from Doreen, and a little ice cream added up to about sixteen ounces of food. That’s a new high. It’s a long way from being able to eat more than her big brothers (which she has done in the past!), but it’s good. Her level of constant pain is also lower, down to about two on a scale of one to ten.

Katy also got a new dress yesterday, which made her very happy. This one is much easier to put on and take off without getting tangled up with her TPN cord. If you’ve ever tried to get dressed with a tube attached to your arm, you will appreciate that. Fortunately the TPN bag is portable, so she carries it around like a back pack. Nearly every evening when I get home from work, she’s sitting at the dining room table surrounded by her laptop and a stack of cards, letters, and books (and her Virginia Tech water bottle).

Thanks to Dan for changing the format of the blog slightly. A bigger font and increased contrast will hopefully make it easier for some of our visually impaired friends to read.

Katy just woke up and says she’s feeling good this morning.

Thanks to all of you for your continuing prayers and encouragement.

  1. Carrie Thompson Says:

    I am so glad you are doing better! The Lord has certainly answered our prayers.

    Here is a joke for you:

    “A small boy is sent to bed by his father.
    Five minutes later….”Da-ad….”
    “I’m thirsty. Can you bring a drink of water?”
    “No. You had your chance. Lights out.”
    Five minutes later:”Da-aaaad…..”
    “I’m THIRSTY. Can I have a drink of water??”
    “I told you NO!” If you ask again, I’ll have to spank you!!”
    Five minutes later……”Daaaa-aaaad…..”
    “When you come in to spank me, can you bring a drink of water?”

    Your Sister,

  2. Cecelia Says:

    Glory to God, Katy! I’m elated and misty-eyed at this WONDERFUL news! Love you so much!
    P.S. Please tell your Mom I emailed her at her pca-research address. Thank you, Honey. Have a good day, and I’ll be praying for you!

  3. Heather Kirkwood Says:

    Way to go Katy! I’m so excited to hear that you’re doing better! I didn’t post or e-mail yesterday, but I was watching the blog! Grin! I leave for NIH on Sunday. I’ll try to remember to take some pictures for you.

    Gotta run…I’m supposed to be working - evil grin! I’ll try to e-mail you tonight.

  4. Sidu and Jillcha Says:

    Katy, it is so good to hear that your food intake has increased. I bet it doesn’t take much to start eating as much as your brothers; them boys don’t eat much :)

  5. Sarah Says:

    So glad to hear of your improvement, Katy! :-) Continuing to pray for you. Praise God for His blessings are new every morning!

  6. Sally Ludwig Says:

    Hi Katy,
    I am so happy that you are feeling better and able to eat. I loved the picture of you and your dog. He looks like a great pal!
    Please know that I am thinking about you and your family and praying for you all.
    Sally Ludwig

  7. Karen Tillman Says:

    Hey Katy,

    WOW!!!! 16oz. of food!!! That is really progress!!! Not only that, I’m sure you appreciate having some flavorful tastes on your tongue!!! I hate not being able to eat!!!! Let’s face it…I LOVE food, what can I say. I remember once when I hadn’t eaten for nearly a month…..I would get people to bring in Lance Snack Crackers, and I would lick them for the salty taste!!! The nurses got a big kick out of it, and were amazed at the restraint I showed in eating them!! Puhleeeese, if you know something is going to casue a problem you always proceed with caution!!!! My brother in law is a minister, and I can remember Rick starting the ritual of bringing me Werther’s Original. So now, everytime I am in the hospital I look forward to his visits as I know he will bring Werther’s, whether I can eat or not!!!! Anyway, gotta go fix dinner for the hubby, and I’ll be sure to eat a bite for you!!! Take care and hope you are eating tubfuls soon!!!!
    God Bless You Always
    Karen Tillman
    Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network Inc
    NC phone:336 954 3604
    NY office 1.800.789.9477
    my email:

  8. Danae Says:

    That is GREAT news!! I am so glad you can finally get some yummy tastes in your mouth. You have been so patient, Katy. I know you got (and still get) frustrated sometimes, but you don’t go nuts and throw fits like you could have!! I definitely admire that!

    Well, speaking of which, I have to go eat, and then there is a luau later. I’ll try to get some picturs.

    I love you!

  9. Jess Lee Says:

    Hey Katy,
    I’m Jess. My mom has HPS too. I got your website from Candice and Crystal. You sound so amazing and strong, and I just wanted to let you know that you are an inspiration and that you’re in my prayers! Hope to see you at the HPS conference in February!

    God Bless,

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