Wednesday, August 30, 2006

Out and About...

Today, Mom and I got up early to get ready for my doctor’s appointment. It takes me a long time to get ready now, because of the TPN. My mom has a way of wrapping my arm with a plastic trash bag and tape. This enables me to take a shower by myself, but as you can imagine, everything takes longer when you’re hooked to a feeding line.My doctor’s appointment went well. I told my mom I really like Dr. Dye because he is calm. Because HPS is so rare, we find that at least half of the doctor’s appointment is spent educating the doctor about this disease. Dr. Dye was a good listener. I have to go back to the hospital for a couple of tests. Then I will see Dr. Dye again in mid-September.

On the way home, I was feeling pretty good, so we stopped at Wal-Mart. They have a wheelchair with a basket attached and I rode around in that. This is first time I got to shop for my baby food! You should try the vanilla custard sometime. Yum! Shopping is so theraputic, but now I’m ready for a nap. I guess I shopped until I dropped!



  1. Lynne Kilburn Says:

    Hey Katie and Dawn!!

    Kristi used to love those wheelchairs with the baskets. She always wanted to go faster! Dawn, there’s your walking exercise now!!

    I so enjoyed our visit yesterday. You look so good Katy. Keep eating that baby food - my favorite when Kristi was little was the plums - mmmmm mmmmmm mmmmmm!

    Glad your appointment with Dr. Dye went well.

    Talk to you soon…

    Luv ya,


  2. Carrie Thompson Says:

    I am so glad to hear you got to go shopping. I bet you just love to zoom around in those chairs!! I love you. We are continuing to pray for you.


  3. Karen Tillman Says:

    Hey Katy,

    Sounds like we are kindred spirits!!! I can remember the first shopping trips after being sick for so long!! And wheelchairs are truly marvelous devices!!! Then after the day at the mall, you come home and rest for hours, as the trip just seems so exhausting. I am so glad that you are able to get out, and getting out as much as possible is the best therapy next to love from God, family, and friends.
    Take care
    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:

  4. Ryan Kirkwood Says:

    Dear Katy
    Heather and I are so glad that you have had another great day and we are sure you will have many more. Heather has not been on the computer today and her cop out is that she is tired. LOL No really she has been spending her days at NIH. The good news is that she got in the drup protocol. Well that is it for now have a great day tomorrow.

  5. Julie Wensley Says:

    Hey Katy! I’m so glad you felt good enough to go out yesterday after your Dr. Appt. I hope you’re encouraged about your progress - little steps at a time. Hey, I found a great article in the Blue Ridge Business Journal about a christian young man who owns a manufacturing business in the area. He is Blind and 21 years old. It’s a great article. They didn’t have it up on their website, so I contacted the newspaper and they emailed me a copy. He was also included in their Annual “20 Under 40″ list of sucessful young entrepreneurs. He’s the youngest one to ever be included in that list. I’ll email it to you so you can read it.

    We love you!

    ~Aunt Julie

  6. Trisha Ferris Says:

    Hi, Katy & Family,
    I won’t be checking your blog for a while since Kenneth & I are leaving tomorrow for a vacation in New England, but we’ll be praying for you as we travel in Mass., N.H. & N.Y. It sure does look like God is answering our prayers for you. How encouraging it is for my faith when you & your family give praise to Him for each small & large sign of progress. It would be natural to only focus on the fact that you still have HPS. But then you know that God is up to something big in your life, & He is being glorified in a way that perhaps He wouldn’t be if you received immediate healing. I feel privileged to be counted among your friends. Thank you for openly sharing this experience with all of us.
    Love in the Lamb,

  7. Linda Burk Says:

    HI all…thinking of the Blog glad things are getting better…I finished the first four days of all day Kindergarten..we made it and I love it..the students were criers..the day flies by..lots of the pictures of Katie..she is sooooooooooooooo PRETTY…and what a sweet disposition……Happy Labor DAy to all……….we spent this week visiting Mr. Burk in the hospital..he will head to a rehab center tomorrow..hopefully for just a week or so..he is weak……we will probably have to make a living change for him..Mr. Burk is living alone in his two story home on an acre of land..not the best set up for him……….My dad is receiving total care in a group home…….busy times.. The rain is coming your way..hopefully it will come and go quickly so you can enjoy a glorious weekend……..hugs to all, LInda

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