Thursday, August 31, 2006

A Great Day

This has been a terrific day! We started out rather slowly, but by noon Katy reported that her pain level was around a 2, the lowest it has been in a while. (that’s using the scale of 1 - 10). It has made a big difference in her ability to think clearly and enjoy the day. While Katy continues to show signs of improvement she does get in a hurry to get past this. I have to remind her of all the small steps she is making and the victories she has already won. It always helps her to hear the good things. She is already planning her TPN removal party.

Katy still has not been able to manage climbing the stairs to her room, but she is determined to try to manage it this weekend. All of her vision tools are upstairs and she is starting to think about getting back to finishing her Constitutional Law class. She has a special table set up under a camera that enlarges her textbooks enough for her to read. Someday I’ll take a picture of the way she sets everything up to do her schoolwork and post it. The technology is awesome, and she has just 3 classes to finish before receiving her 4 year degree. Her goals are out in front of her and our prayers surround her so she remains hopeful.

I was reading to her this morning from Psalm 119, “If your law had not been my delight I would have perished in my affliction. I will never forget your precepts, for by them you have preserved my life.” On the way to the hospital in the ambulance last week she said, “Mom, quote scripture!” I did because His law IS her delight!

I went back to work today for a few hours. I am thankful for my friend, Linda, who came to stay with Katy. I was able to get a few things accomplished at the office and it was good to manage something I could do something about!

God Bless you…so many of you, who are praying for our sweet girl. We are so thankful for you and we are praying blessings for you as well.

Comments:
  1. Jess Says:

    Hey Katy-Lady!
    I’m glad that you are feeling better! I am always impressed when I read your blog. I feel like I know you better and better and I am more and more impressed by what I learn! What a Godly young woman you are! I really can’t say that hearing scripture would have been what I wanted when I was riding in an ambulance - and I’m challenged by that thought!! I’m glad that your food is staying down and that you like Dr. Dye. I took Noah and Lydia to the dr. today - for their checkups and I really liked the dr. we saw as well…so I can totally relate! Finding a good one that you can talk to and that will LISTEN is soo refreshing!!

    We are praying for you chicka!!

  2. Danae Says:

    Katy,
    Be sure to invite me to that party - I definitly want to be there!!

    I love you!
    ~Danae

  3. Carrie Thompson Says:

    Katy,
    You have come so far & the Lord will continue to help you. Don’t loose heart!!

    I have been studying these verses in my devotions. If you would like me to forward you the devotionals, I will. They are from http://www.backtothebible.org

    Psalm 100:1-5
    [A Psalm of praise.]

    “Make a joyful noise unto the LORD, all ye lands.

    Serve the LORD with gladness: come before his presence with singing.

    Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture.

    Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name.

    For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.”

    Love,
    Carrie

  4. Linda Kochendarfer Says:

    Katy,
    Thank you for the beautiful card we received yesterday! I loved the textured netting and sparkles as well as the flowers. A TPN removal party? Hey, you can tell you are a “Wellspringer” - ANY excuse for a get together and food! As you get closer to that day, you’ll have to let us know what goodies would be your favorites - the only stipulation is no rice cereal. I was outside early this morning; on the top of the mountain where we live the wind was blustery, the rain gentle and the sound of the trees swaying and bending a delight. I am imagining showers of blessing on you and your family today. Our love to you Katy, on this glorious day. Walk with the Lord and know your name is on our lips often.
    Mrs. K

  5. Laura Griffith Says:

    I’m learning so much from your blog. I think I might start an online journal too. I’ve been writing in notebooks for so long, I don’t know if I could actually take the dive :) I’ve been keeping journals on my children. Lorien already has two one subject notebooks. Katie and Amber got shorted. I started 5 subject notebooks for them and only have them half filled. They still love to look back on what they did when they were little. You will look back on your entries in the same way. Amazed at how God was working in your life and how you ever got through it. You Will Get Through It!!! I suggest a going away to Maryland Party!!! :) :)

    You and yours are still in our thoughts and prayers.

  6. Julia Kistner Says:

    Hey Katy,
    I am so glad to hear that you are starting to feel better. Thanks to you and your family for keeping everyone updated on your progress. I am praying for you!

    Love,
    Julia

  7. Cathy Lauver Says:

    Hi Katy,

    Just wanted to let you know that I try to check the blog regularly to see how you are doing. You’ve been added to our daily prayer list. Remember that baby food and baby steps go together. You are moving forward with the help of God, family, and friends and that is what counts.

    Love,
    Cathy


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!

-Katy

Comments:

  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,

    Lynne

  2. Carrie Thompson Says:

    Katy,
    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.

    Love,
    Carrie

  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: till3604@bellsouth.net

  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,
    Trisha

  7. Linda Burk Says:

    HI all…thinking of you..read the Blog today..so 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 super..no criers..the day flies by..lots of helpers..love 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

Tuesday, August 29, 2006

Sleeping Beauty

Can you believe 9 straight hours of restful sleep? God is good. It was one of the best nights yet. We are certain that it is answered prayer. When I woke up this morning feeling so rested, I quickly looked to see if she was breathing! Most of you moms will relate to that because the first time your sweet infant slept right through the night it was startling but oh so wonderful, wasn’t it?

Last week we were giving Katy extra pain medication when her pain patch was running dry. This morning it was time to change the patch but the extra pain medication was not needed. We are seeing little signs of improvement like that and feeling very blessed.

Katy may want to write more later after her nap. God bless all of you and thank you for your prayers.

Comments:
  1. Laura Griffith Says:

    How exciting and yes Dawn, I can relate to the startled feeling. :) I’m so happy ya’ll have found some much needed rest. You may be on to something with using the spasm med instead of the extra pain med. I will pray for wisdom in regards to that. Just know we are thinking of you.

    Laura

  2. Cecelia Says:

    Big blessings for a big faith! Praise God, Campbell Family!
    With love,
    Cecelia

  3. Linda Clifton Says:

    Dear Katy and fam,

    Love, prayers, blessings to you all! I’m sorry I’ve not been in better touch….things challenging here with my thriving business at the Center, my dad is once again in the hospital, Jeremy coming and going, now settled at Houghton for another year, and Cary and I are in L.A. with Nathan and Shannon, as Cary then heads off to China for a month and me back to Ohio. I’ve read over your blog and am wondering where all this is going! I look forward to trying to keep in touch and wondering how God’s good hand will rest upon you in these days. My love and prayers, Linda

  4. Carrie Thompson Says:

    Katy,
    What a wonderful night! God has answered our prayers & showered bleeings on you & your family. Praise God for He is Good.

    Love,
    Carrie

  5. Carrie Thompson Says:

    Katy,
    Oops…Typo. I meant “& showered blessings on you & your family.” :-)
    Love,
    Carrie

  6. Karen Tillman Says:

    Dear Katy,

    Sry, I haven’t been in touch for a few days, but we celebrated my daughter’s 18nth birthday after church Sunday, and then I got sick with a really bad migraine headache. Then yesterday, I spent the day volunteering at the hospital all day, only to have my headache return with a vengence!!! I rarely get migraines, but this one was a doozie. I basically spent the evening in bed with my sunglasses on and moving as little as possible. Today however, I am feeling much much better, and was anxious to see how you were doing, and I didn’t want you to worry about where I went. I am so glad you are making such progress, even though I know it seems slow to you. All things in God’s time, that is what we must all remember. Btw…..I spoke to Heather earlier today, and she had a very tiring day yesterday, and I know she is thinking about you too. You are with us constantly in our thoughts and prayers. If I can find an article, that was written about me a couple of years ago, I will send it to you via email. I hope you will find it uplifting, and it will go along well with what you posted a few days ago. And please remember HPS doesn’t mean the end, look at it as a new challenge. Something to conquer!!!
    Take care
    Love
    Karen Tillman
    Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network
    NC phone: 336 954 3604
    NY office: 1 800 780 9477
    my email: till3604@bellsouth.net

  7. Elizabeth Harris Says:

    Katy and Dawn,

    Sorry I haven’t written in a while. We have been winding down and getting ready for school to start. Glad to hear Katy is improving daily. I love your brown dress and shawl!!!

    I’m glad you were able to be home for your Grandfather’s birthday party. :)

    You are in my thoughts and prayers.

    HE keeps on making a way,
    Elizabeth

  8. Julie Wensley Says:

    Hi Guys! I was just IMing with Danae and she said she had IMed with you earlier, Katy. She had said last week that she was looking forward to doing that with you again when you felt better. She has been pretty lonely with no roomate and no suitemates. So I know she was very glad to talk to you.

    I am very thankful you had a restful sleep. You are both Sleeping Beauties! We’re praying for another one tonight.

    We love you.

    Julie

  9. Bob, Amy, Emily, Meredith and Abby Says:

    Good morning, Sleeping Beauty!!! I am glad that I took time to check the blog today. We’ve been praying for you and wondering how things have been going the last few days. Then I just remembered this morning to check the blog. Now I see that you are sleeping well and even eating…and you even have gotten some beautiful new dresses!!! Praise the Lord for all of the good news that I read about you this morning!!

    We’ll keep praying for you! And we’ll see you soon.
    :0)

    The Collins Clan

  10. Joan Colwell Says:

    Katy

    You are such a precious angel!! I am so glad to hear you are sleeping better at night. Just letting you know, when you are done with Dawn, I would love to borrow her. She is so wonderful!! I know you know that, and she loves to care for you. Us moms love to tend to our kids. We have seen God do many miracles in your life already, and He is anxious to do more!! Praise His name.

    Love, Joan

Monday, August 28, 2006

Better Now

We are so grateful to our family and friends for your prayers! Sometimes I wonder what this whole situation would be like if we didn’t have so many people praying. I don’t even want to imagine.

Katy woke up at 4 AM with abdominal pain so severe that she was crying for help. I tried to think about what to do since she has refused to take any more Lortab. She complains that she can’t think clearly while taking it and since it is in pill form it adds to her distress when she has to swallow it. We tried several things and by 6 AM I asked if I could just give her a small amount of the medication she is given for the spasms. It is a liquid and more of a muscle relaxer than a pain medication. I gave it to her at 6 AM and she was asleep again by 6:15! It is now 4 in the afternoon and she is feeling great! She just got up for the day. She is refreshed and has asked for something to eat.

I had asked people to pray that we would get better sleep at night and I believe it will happen. In the meantime, Katy and I had some great prayer time in the middle of the night for many of our family and friends. We also had the gift of a restful day at home. My boss (who happens to be my husband) is completely understanding when I tell him I won’t be in the office. So right now you can imagine Katy and I here at home counting our blessings!

Comments:
  1. Carrie Thompson Says:

    Dear Mrs. Campbell,
    It sounds like ya’ll are having fun!! Working for you family does have its benefits–I work for my brother!

    It is very good to hear that Katy is eating. We are continueing to pray for you & the rest of the family. The dress you sewed Katy is just lovely. And I think you made it so fast.

    Love,
    Carrie

  2. Cindy Bowles Says:

    Hi Katy,
    I am so sorry to hear that you haven’t been feeling well lately. I have really enjoyed reading your blog this evening and will continue to keep up with your progress. Your pictures are beautiful! You are in our thoughts and prayers. Stay strong and keep wearing that pretty smile.
    Love,
    Cindy

  3. Lynne Kilburn Says:

    Hi Katy,

    Sure glad to hear you are feeling better and eating. I’ve really enjoyed reading your blog, it’s such a great way to let everyone know how you’re doing. By the way, you look great in the pictures! You are always in my thoughts and prayers. See you soon…

    Love,
    Lynne

  4. DeeDee Says:

    Dear Katy,
    God’s love for you is clearly seen in your family’s love and tender care for you over the years. What a perfect plan God had (as always) in placing you in such a loving and God honoring home. And how that tender love shines through you and your deep deep love for our Lord.
    You will probably never know all the lives you have impacted by who you are and who you have willingly become in God’s guiding hand.
    What a wonderful testimony it is to see the faith and love that comes from a family who truly fears and revere’s God. Thank you for being such a bright light, no a beacon, in this dark world.
    My prayers will continue on your behalf and your family’s. Love, DeeDee

  5. Grandma & Granddad Says:

    Dear Katy,

    Guess what I have been doing for most of today? Washing sheets and towels and more sheets and towels and more sheets and towels! We are almost back to normal after all of the family have left as of Saturday afternoon. Granddaddy was thankful that yesterday was Sunday, a day for worship and rest. Otherwise, he said that I would have been working all day. We enjoyed so much having our four families together at times for the past two weeks. Judy’s family left to go back to Ohio on Wednesday. Dave’s family flew back to Seattle on Saturday afternoon. We were at Jackie’s for lunch on Saturday. She took Dave’s family to the airport because her van could take them all. We would have had to take two cars, which we did to Jackie’s house.

    Katy, you are in our thoughts and prayers. We appreciate so much being able to check for a report everyday. We trust that you will have another good night’s sleep.

    We love you,
    Grandmom & Granddaddy

  6. Lynda Griffith Says:

    Dear Katie,
    Now that I have figured out that one is supposed to answer a blog, I want to say that you are always in our prayers. We love you and hope you and your mom sleep well tonight. Love, Lynda

  7. Sara Says:

    I can imagine you and Katy counting your blessings in your beautiful home.The sweet,sweet memories of our visit with you this summer are still in my heart.The cool evenings sitting on the side porch.The long conversations,the laughter,the music,the baked potatoes and of course the rice!You are all so dear to me and I am very blessed to know you and that I can call you family. Katy,I love your sweet yet strong-willed nature.Continue to use that nature to fight.The Lord has truly blessed you! We pray every night for you to have a peaceful and restful sleep.
    I love you all very much!
    Sara

  8. Jennifer :-) Says:

    Hi Katy! I’ve had some catching up on your blog here to do since the last couple of days have been rather busy for me. We’ve been entertaining a lot at our house and between that and the homework, I’ve been staying pleasantly busy. Not stressfully busy (yet), for which I am thankful.

    I’m so pleased and glad to see how very well you are doing!! It is a bolster to my faith to see how faithful our God really is, even in the little things. I’m hoping to be able to come see you soon. I’ll call and see when the best day would be. :-)

    Praying you get a good night’s sleep,
    Jen

  9. Carrie Thompson Says:

    Katy,
    I was looking at the pics in the hospital album. I like the name for your lamb!

    Love,
    Carrie

  10. Barbara Walker Says:

    Hi Katy,

    What a blessing to see how you are getting better and better each day - its like seeing God’s hand in the smallest detail of your life right now. Seeing answered prayer like this is an inspiration to all of us! Thanks for sharing with us through your blog.

    Love in Christ,

    Barbara


Sunday, August 27, 2006

Sabbath Rest

Today has been a peaceful day with no medical complications. Praise the Lord! Thank you to Martha Pelish and Laura Griffith who stayed with me, so Mom and Dad could go to church this morning and small group this evening.

Psalm 117: 1-2
“Praise the LORD, all you nations; extol him, all you peoples. For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD.?

This morning, I read this Bible passage as part of my daily reading through Psalms. I have seen the faithfulness and love of God every day, often in the details of my life. He has indeed given me a “hope and future? (Jeremiah 29:11), not only by sparing my life, but also by giving me new friendships with people who live with and understand HPS. When my family first read the information about HPS, I was not sure I wanted to stay alive. I didn’t see any prospect of living a productive life. I imagined my future as someone who would not be able to enjoy food again. I did not want my life to be consumed with feeding tubes or hospital visits. The first time I experienced “hope? was when people from the HPS Network contacted my family. Many of you have probably read the comments from Heather Kirkwood. She has HPS, but God is using her as a newspaper journalist. Heather and others wrote to my family, telling us that there was a “hope and future? beyond the initial HPS diagnosis. I’ve been able to email people like Heather, Karen, Candice, and Crystal who continue to encourage me to keep pushing past the pain until things get better. Like all of them, I want to live a victorious life, sharing the Good News of the Gospel of Jesus Christ.

-Katy

Comments:
  1. Danae Says:

    Hey Katy,
    I am so glad there is hope for you and that other people with people with HPS have been able to encourage you. Praise God that you had no medical complications today; I’m praying that continues!

    I have taken some pictures of campus for you. I will take some more tomorrow, and then put them up on xanga or somewhere. My parents came this evening to bring me a fan and some cooler clothes. You know I like to wear jeans, but they are too hot right now!!

    Well, I need to get to my homework. I’ll talk to you on AIM sometime this week.

    Love,
    ~Danae

  2. Ryan Kirkwood Says:

    Hello Katy
    Heather is here with me in Northern Virginia and I just read your blog today and she is sitting hear blushing. In case you do not remember me I am Heather’s brother. She goes to NIH tomorrow and will be there throught the week. Of course she will spend her nights hear in Crystal City and Metro in to NIH. We both pray that for amny more Healthy days in your future and look forward to seeing you when you come to NIH.

    cheers

    Ryan Kirkwood

  3. Julie Wensley Says:

    Hey Katy,

    You have so many friends and family that love you. And now you have your HPS friends. The cool thing is that while they were encouraging you, you were also encouraging them. I love the way that works. It reminds me of one of my favorite passages:
    11 Cor 1:3-4 -
    “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

    I love you! Sleep well.

    ~Aunt Julie

  4. Carrie Thompson Says:

    Dear Katy,
    It is wonderful to hear of your day yesterday! I am glad other HPS-ers can encourage you.

    Jeb was delighted to see the pics of you. I am continuing to pray for you.

    Romans 8:28, “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”

    Love,
    Carrie

  5. Crystal La Brie Says:

    Hi Katy, I am so glad to hear that you have had some relief from the neck spasms. You look great and fashionable-the brown dress that ties around the neck is GORGEOUS! Know that you are continually in my thoughts and prayers.

    Crystal

  6. Jennifer Blugerman Says:

    Katy,
    You look beautiful! I’m sorry I haven’t visited in a few days but Emma got a nasty cold a week ago, and now David and I both have it! We dare not get near you when we’re sick, but know that we think of you and pray for you and your family daily! It was great to see your parents at church on Sunday! Our joy will be complete when you are able to be there with them!

    Blessings,
    -Jennifer


Saturday, August 26, 2006

Saturday News

Today was another good day! Every day, God is strengthening my body and soul. I am starting to feel more like myself. This morning, we had some friends (Carole and Mac) from church visit for awhile. Carole played the piano while Paul Burton sang a song she had brought with her. I’m finding that music and Scripture are like daily manna.

It has been 72 hours since my last spasm attack. Thank you for all the prayers. I hope I won’t have another spasm, but prayer got me through them all.

Below is a picture of the new dress Mom sewed for me this morning. Am I a princess or what? (I also added some additional pictures to Photo Journal 2, taken the day I left the hospital)


Sat--edit.jpg

Comments:

  1. DeeDee Says:

    Katy,
    You look absolutely radiant…how I rejoice with you in your being at home. There’s no place like home, eh? God’s faithfulness is evidenced in your countenance. I anticipate God continuing to be glorified in your life and in your testimony. Keep that beautiful smile on you beautiful face. Love, DeeDee

  2. Trisha Ferris Says:

    Katy, you truly do look like a princess & I know your family treats you like one as well. You are so loved!
    I hope to visit you this coming week. I can read some exciting poly-sci to you if you’d like.
    Love in the Lamb,
    Trisha

  3. Heather Kirkwood Says:

    The new dress looks great! I love it (and the tea set in the background - couldn’t help but notice. I collect tea pots! HA!) Just sent you some e-mail!

  4. Karen Tillman Says:

    Hey Katy,

    Very Tre’ chic….your mom did a great job!!! wish I could write more, but I would like to be able to keep my eyes open during service tomorrow, so off to beddyby for m3. Hope you have a restful night too.

    Love
    Karen Tillman

Friday, August 25, 2006

Happy Day

It has been a wonderful and busy day…

The Pill Cam has safely exited the building (my body)! Mom cleaned it out of….well…and promptly sanitized it several times. After completing this gruesome task, I think Mom should receive the “most courageous and strong-stomach" award. So, the Pill Cam is now in the possession of my hands rather than my GI tract. This is really an answer to prayer, because I had the camera inside my abdomen for 21 days and we were beginning to fear that I would have to have it surgically removed. Below this post, I have included a picture of my prized camera.

This afternoon, I had an appointment with Dr. Davenport- the surgeon who took it upon herself to care for me even though she had no prior knowledge of HPS. I was so happy to be sitting up, feeling pretty good, and able to talk to her without falling asleep on her, which I did several times in the hospital. I appreciate her so much! She is taking care of my Picc line, which enables me to get nutrition everyday. So, I guess you could say, she is keeping me alive!

After my doctor’s appointment, I was not done having fun. I was all dressed up with nowhere to go and about 30 minutes of energy left. Mom took me to JoAnn Fabrics, where I chose some fabric for two new dresses. The dresses will tie at the shoulders, making it easier to accommodate the Picc line in my arm.

Thank you to Maylin and Juliana for visiting this afternoon. They brought me a plant and a tea cup. It was so much fun to see them again. After all of these events, I took a looooong nap! It might not seem like this was an extraordinary day, but it was for me.

Katy with the Pill Cam:

Dr. Davenport and Katy:

Comments:
  1. Fairlight Says:

    Hooray that you finally got the Pill Cam safely! And hooray for a daring mom.:-)

  2. Laura Says:

    That’s a really cute dress that you’re wearing. Did somebody make that for you? I love it and the shawl too. It sounds like you’re feeling a lot better. :) smiley time hehe :) :) :) :) Well that amusemed me for like 2 secs of my life. hehe
    Love ya bunches of bananas
    ~LAura : )

  3. Heather Kirkwood Says:

    Yay for the camera! And triple YAYS! for your mom!!!!! I shudder at the thought! Grin! I’m glad you had such a great day - love the shaw too!

  4. Barbara Walker Says:

    Hi Katy,

    Its great to see you looking so pretty and so well!! Hooray for the camera’s exit! You have a loving warrior in your Mom!! So thankful to God that you are enjoying your days more now!

    Love in Christ,

    Barbara

  5. Dan Wensley Says:

    Katy, you brighten my day!


Progress

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.

Comments:
  1. Carrie Thompson Says:

    Katy,
    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….”
    “What?”
    “I’m thirsty. Can you bring a drink of water?”
    “No. You had your chance. Lights out.”
    Five minutes later:”Da-aaaad…..”
    “WHAT?”
    “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…..”
    “WHAT!”
    “When you come in to spank me, can you bring a drink of water?”

    Love,
    Your Sister,
    Carrie

  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: till3604@bellsouth.net

  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!
    ~Danae

  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,
    JESS


Thursday, August 24, 2006

A GOOD Day!

It was a wakeful night with muscle aches, breathing challenges, and a nightmare, but when the sun came up there was joy in the air! Katy is in good spirits and it is a beautiful day. This is a great time to tell you that Katy is so happy to be home. She had a list beside her bed last night of things to get accomplished today. She always does that. It was just good to see her doing it again! In many ways we have seen small changes that give us reason to praise God for answered prayer. For one thing, she is now able to recline at night. For the past 6 weeks she has had to sleep sitting up. We have also seen her adjust to her pain medication and she is able to work through pain without taking any of the extra pain relievers she was given for “break-through” pain. Therefore she is able to think more clearly. And for more good news, she ate more rice today at 3PM and as soon as the pain became unbearable we took a stroll out to the yard to keep things moving. It stayed down!

We are taking one day at a time, and we’re so grateful for days like these. Something she had on her list of things she’d like to accomplish was climbing the stairs to see her room. The day is not over!

The small groups in our church recently took some classes on knowing our spiritual gifts, and discovering our God-given talents and life experiences, and then we were challenged to use what we learned to benefit the church. Our small group decided to make a hiking chair for a lady named Melody. She is a delightful lady with health challenges that have left her wheelchair dependent. Our small group asked her if we could design a hiking chair similar to a sedan chair to make it possible for her to hike with us up a mountain just to see the view. She agreed and the chair was designed and built by Paul and Bruce Pelish. The men in our small group helped with the planning, and the women are planning the picnic lunch for the hiking event. So here is the rest of the story. The chair is built but not quite finished and sitting in our garage. Katy wanted to go down to the creek but wasn’t sure she could make it on foot. The hiking chair was ready to go! Thank you, Bruce, and the members of our small group. We had no idea when we started how God would bless our efforts. WOW.




Comments:
  1. Carrie Thompson Says:

    Dearest Katy,
    I just love your blog! I check it every few hours. Haha!

    Ok, that’s enough. Praise God you ate more rice. It is really good you are able to help the pain go away by walking. I’m still praying for you.

    I’m looking forward to talking to you on AIM, again. September 2-10 I will be using Adam’s computer for business, so I will be available on IM more!

    I love you, Katy! Praise God you are doing better!

    Love,
    Your Sister,
    Carrie

  2. Barbara Walker Says:

    Dear Katy - You are really making progress. Getting outside must make you feel so good! Eating real food and keeping it down is a great sign! You looked wonderful in your picture!

    So proud of you - keep up the good work (I’m sure it seems like labor to you!).

    Love to you in Christ,

    Barbara

  3. Julie Wensley Says:

    Katy - It was great talking to you today. (Actually, Uncle Dan had you on speaker phone, so you probably didn’t even know I was there, did you?) You’re looking great. Some day you’ll be able to “eat your weight in rice” again! I’m so glad you’re mom thought to have you start walking when the pain started. You know that’s God.

    I told your mom I can still come and stay over night some night if you want. I got new jammies and I want to show them off!

    Our house is so different without Danae here. It’s really quite strange. But she seems to be doing so well and I’m really encouraged about that. She’s been keeping tabs on you several times a day.

    Sleep well sweetheart. We love you!

    ~Aunt Julie

Wednesday, August 23, 2006

A Restful Night

Katy had a much better night last night. She had at least nine hours of peaceful sleep. She had another bout of spasms yesterday afternoon but we now have the medication at home to deal with it. She was pretty well exhausted after it was all over so we are grateful for the sleep she had last night. A huge thanks to Jennifer Blugerman and Lucia Moreland for helping Dawn and Katy through the afternoon spasms, both with physical support and prayer. Jennifer came in response to Dawn’s call for help and Lucia just stopped by at the perfect time (God’s time).

For those of you who have sent special messages to Dawn, I thank you from the bottom of my heart. She has been a trooper through this entire process, from the time she first suspected (before anyone else) that this might be HPS. Dawn and Katy have a special relationship. They are mother and daughter but they are also good friends, so Dawn has been suffering both as a mother and as a friend.

There is more good news for today than just a good night’s sleep (as good as that is). Katy ate a half cup of rice for lunch. That’s the first solid food she has been able to swallow and keep down since she went into the hospital at the end of July. She had a lot of pain with it, but discovered that walking around a little helped the pain to subside quickly. It may not sound like much, but these were two major accomplishments - eating solid food and discovering that she can do something to relieve the pain instead of just enduring it.

Many people have expressed how much they appreciate this blog as a way to keep informed. I have to say that we probably appreciate it more than any of you, because of the encouragement it gives us when you all leave comments. Katy has always loved to get mail (credit card solicitations don’t count) and she now gets mail (via this blog) every day. She also appreciates the cards many of you have sent.

Thanks to everyone for the comments, prayers, and moral and physical support. We are grateful and humbled at the same time. You all are showing God’s love to us.

Comments:
  1. Dear Katy,
    I am very thankful you were able to have some sleep & eat rice. Praise God! I am so glad you enjoy getting mail–I do, too. I’ll have to send you some. :-)

    Katy, I am sure you want to know how we are all doing! So, I’ll be the newspaper for our family. ;-)

    Mom, Dad, Zach, & Adam are leaving for Alaska soon. And Zach & Shophie Wilhelm are coming to stay with us–we are in for some fun!! The Cohen girls came over today for awhile. And I’m getting over my sprained ankle–Praise God!

    Love,
    Carrie

  2. Barbara Walker Says:

    Hi Miss Katy,

    I spoke to your Mom this afternoon and I was thrilled to hear you had a better night and even managed some solid food! Your Mom is so strong and has a battle plan for your situation. God is so good, isn’t he, when he provides for us through parents and Godly friends. I have offered to help in any way that I can and hope that you’ll take me up on my offer.

    Praying for you numerous times a day!!

    Yours in Christ,

    Barbara

  3. Karen Tillman Says:

    Dearest Katy,

    I am so glad that Paul posted something about you today. I was really starting to get worried, as I have checked your blog at least 5 times today, knowing that I would be at the hospital volunteering tomorrow, and not be able to check quite as often. I am truly THRILLED about the rice going down and staying down, not to mention your being able to alleviate some of the pain. Rice was one of the few things that sustained me when I was dealing with any bowel issues. Not the most flavorful thing in the world, but it was REAL food!!! I think it is amazing how God always seems to send us what we need, when we need it, so I am glad that Jennifer and Lucia could be with you. I don’t want to tire you out with just this message, so I am going to run for now, but know you are in my thoughts throughout most of the day. May God Bless You and continue to give you and your family the strength ya’ll need to get through this.
    Take Care and God Bless
    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: till3604@bellsouth.net

  4. Grandma & Granddad Says:

    Hi Katy,
    We are so glad to hear about your better day. We are praying for you always. Grandma wrote a longer note a few minutes ago, but it somehow got lost when she was doing a spell check. We will have Carrie help us figure it out tomorrow. We pray that you will have another good night.
    Love,
    Grandad and Grandma

  5. Laura Says:

    Hey Katy,
    I just love leaving you comments. Hopefully they’re making you feel better. I can’t wait till you can talk on AIM because I have sooooo much stuff to talk to you about. I’m going throught a Katy withdrawl. So was the rice Wegman’s rice? hehe I wish I could make those cute little yellow smileys, but well for now these will have to do :) :) :) :) :) :) :) :) :) :) Sleep tight, don’t let the bed bugs bite. Love ya buches of bananas
    ~LAura : )

  6. Laura Says:

    OOOOOO I did make the cute little yellow smiley’s. YAY!!!! :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) I think that enough fun for one night. hehe

  7. Danae Says:

    Katy,
    I really wish I could see you. I was so sorry to read about your spasms the other night, but I’m so glad you had a better night last night!

    I know you have been asking how I am. I called your house Tuesday night, but you were already sleeping. I gave your Mom my room phone number (now that I know it!) so you can call that or my cell phone anytime!

    Radford is good. I live on the first floor of a thirteen-story dorm!! My classes are intersting so far, but I think I will have a lot of reading; I have 9 books for my children’s lit class! I have met many cool people from Campus Crusade. My only complaints so far are that I can’t reach the tray “disposal” in the cafeteria, and that I have no roommate OR suitemates! Hopefully I’ll get one or the other soon!

    Well, I should go because it’s getting late and I have class tomorrow. My parents will laugh at the length of this “comment,” but I know you probably check this a whole lot more often than E-mail right now.

    Love and prayers,
    ~Danae

  8. Jillcha & Sidu Says:

    Where do I start? How can I comfort you, or your family?

    Dear Katy, as you are going through this tough times, I can only encourage you to stay connected with the Lord, who is able to bring you true comfort. We are praying for you everyday.

    With Love,
    Jillcha and Sidu

  9. Carole McFarland Says:

    Hello Dear Ones! We’re eager to see Katy if she is open for a visit, long or brief. Our schedule is flexible tomorrow and Saturday if this would work. Please call rather than e-mail, if possible. We are rarely on the computer. What can we bring or do? Looking forward to seeing our sweet Katy and her loved ones. Please know that you are in our morning prayers, but we would like to put some feet on them! Love, Carole (947-5505)

  10. Gene & Shirley Murphy Says:

    Katy,

    We have been keeping up with your progress and rejoice with not only how well you are doing, but rejoice with the bright prospect of recovery for the future.

    Keep shining! You are definitely making an impact upon those who know and love you.

    In Christ’s love,

    Gene & Shirley

  11. Aunt Judy Says:

    Hey Katy!
    We were all so pleased to see you and to spend the day with you last Sunday. I really enjoyed the little time I had to visit with you and the rest of the family - including chatting with Jenn. I hope we see you again when we come around Christmas.
    We arrived home about three yesterday afternoon and I have been busy getting things back to “normal” mode - whatever that is. I’m mulling my first few weeks of Jr High drawing in my mind - hopefully I’ll be able to get some of my “mulling” down on paper soon.
    Great news on eating the rice - it’s a step up from baby food and it’s good nutrition!
    We are continuing, as always, to keep you ever before the LORD.
    Love, Aunt Judy

    PS Nate was really glad to see Elisabeth and vice versa :)

  12. Jess Says:

    Hey Katy-Lady!
    I just wanted to let you know I’ve been praying for you! I’m glad that you were able to eat a little. Noah has just recently discoved the joys of rice and it is so funny to watch him eat it!! It seems like there must be some kind of explosive properties in our rice because it ends up all over the kitchen!! His hand/eye coordination is not great yet so there is probably as much on the floor as in his tummy!

    I’m glad that you got some good sleep! Sounds like you have been in need of it! I am proud of you - for your strong spirit and faith! You really have been an encouragement to so many people through this ordeal! God is moving! :)

    We love you and hope you have a good day today!
    Jess Lankford