Saturday, September 30, 2006

Health Update

Last night I attended a special event held in Roanoke once a year. It is an elegant dessert reception fundraiser for the Blue Ridge Women’s Center. The Center offers hope and help to women who find themselves in an unplanned pregnancy. It is one of Katy’s favorite things to attend. However, she woke up yesterday morning unable to eat again. Her pain levels had climbed to a “10″ and she was in distress. We prayed fervently but as the event drew nearer, a fever started and things got worse.

Being on the Board of Directors of the Blue Ridge Women’s Center, I had to leave to go to the event and Paul stayed home with Katy. When I arrived at the Hotel Roanoke, I felt flustered, and unable to concentrate. During the evening as friends inquired about Katy, I would ask them to pray. One of them said, “Let me pray with you right now.” This happened several times throughout the evening and as soon as the event was over I called home to hear that Katy had eaten two small bowls of rice! When I got home I went to her room to check on her and the fever had broken!

Paul Burton slept on the floor of Katy’s room last night so that Paul and I could get a good night’s sleep. As we were saying goodnight to each other, Paul Burton said, “If you need me for anything, I’m right here, Katy.” I just checked on them and they are both sleeping peacefully. In writing this blog I am so grateful for family, friends, and prayer. In times of distress there is nothing like calling out in prayer to Emmanuel (God with us). He said pretty much the same thing Paul Burton did, “If you need me for anything, I’m right here.”

Comments:
  1. Jen Larson Says:

    So glad to hear you improved over the course of the evening! I was one of those praying. Dawn, thanks for all you do for BRWC!! Paul, thanks for staying with Katy so Dawn could attend the reception. Paul Burton, I am inspired by your love for your sister. Thanks to all of you for modeling Jesus’ love to the rest of us!

  2. LInda Burk Says:

    HI all.. I have updated myself on Katy’s blog..sorry to hear Katy is still suffering..it has been a busy week here..my dad is back in his group home and hospice has been called in to assist my family with final decisions. What a wonderful caring group of professionals the Hospice organization is..we too, are blessed. A note from Mary Fenlon, they have two more grandchildren on the way..to add to their five..a busy family……how is Collin’s wife feeling these days..the baby will be here soon, right? May God continue to give you the strength to fight for and with Katy..blessings, Linda Burk

Thursday, September 28, 2006

Princess Katy Goes to Washington

We have a big surprise to share with you today. As many of you know, we have been meeting new people though the HPS Network. Two very special people are Candice and Crystal Sipe. They are twins adopted from India and also diagnosed with HPS. They are 26 years old and live with their parents in Arizona. The girls began chatting by computer, then by phone, and have developed a genuine love for each other. Candice and Crystal along with their parents were being flown to Washington DC to be honored at a Gala held at the National Geographic Society. We got a call from Donna Appell, founder of the HPS network, asking us to bring Katy to Washington to surprise the twins. We left Roanoke on Wednesday afternoon and Katy was hugging the girls by 6:30 that evening. Katy sat at a dinner table with 10 other new friends living with HPS. Candice and Crystal were born just 500 miles away from the orphanage where Katy was found. All 3 girls have similar mannerisms, likes and dislikes, allergies to certain foods; and considering the rarity of the HPS genetic disorder we are all wondering…could it be these girls are related? Check out the pictures posted here and under the Genetic Alliance Gala (under the photo journal menu).

There is nothing like being one of God’s kids. He has been so faithful to us at every turn. It is no coincidence that we have found ourselves surrounded with the loving support of the HPS network. We see His hand in everything. Imagine Katy’s delight in also meeting Dr. Francis Collins last night (someone she had read about in her biology book). He is known around the world for mapping and sequencing human DNA. You can read more about him at www.genome.gov (click on “About NHGRI”, then “Director”). He is the Director of the National Human Genome Research Institute. He told Katy he had heard about her already! He also told her he was a Christian (had been an Athiest) and just finished a new book, called The Language of God in which he states, “God is most certainly not threatened by science, He made it all possible.” Katy is planning on reading his book and discussing it with him when she sees him in Bethesda.

After the evening was over we settled Katy in the back seat with a blanket and pillow and took her for a ride around the city. The White House was all lit up. The Washington monument was also. This is an amazing Country filled with amazing people. As marvelous as it all is to be a part of something like this, the best is yet to come. As our great God prepares a banquet for us just think about meeting Paul and Barnabas, the disciples, and the Samaritan woman. We’ll have all of eternity to discover scientific secrets, and those things that are hidden from us for now. What an exciting adventure!

Can this really be happening??

“Profiles of Courage”

Comments:
  1. Heather Kirkwood Says:

    I just missed my bus so I hopped on to see if anything had been posted. Wow! I knew all the girls looked alike, but now seeing the three of them together - wow! That’s just amazing!

  2. Larry Pierce Says:

    They sure do appear as if they could be related! We are excited for you.

  3. Jennifer Blugerman Says:

    Campbell family,

    We just returned from our vacation and the first thing I checked on my computer was Katysblog! What can I say but, WOW! God is so amazing and good! A dream to meet girls like Katy fulfilled — a dream that God placed in your hands in the midst of the valley of illness and great difficulty. How sweet God is to lead us through darkness into blessings we never would have known otherwise! Stay strong. We love you!

    In His grip,
    -Jennifer

  4. April Lang Says:

    WHAT A FANCY OUTFIT MISS. KATY!!! I LUV IT!!!
    See you soon!

    Love,
    April ;-D

  5. Paige Patterson Says:

    Katy,
    I can’t believe how wonderful this website is! It gives us so much information and insight into your life and the struggles you are now facing! I want to cry every time I read your moms journal entries! I am so amazed by your kind hearted and lovely spirit.. you and your mom and whole family. You can find joy in the smallest and most miniscule things!! Things I take for granted every day!
    I do know that God is working in many of our hearts because of you and your family! He has shown me the pure joy and love that he can give to a person, even in their hardest times. I wish every day that I could have your outlook on life. I often do not stop and take the time to appreciate things like painting my toe nails, and enjoying the food that I eat!

    Thank you Katy and Dawn for the love of God that you show to us all! I can’t wait for more updates!! The trip to D.C. sounded amazing!! I can’t believe the ways that God continually amazes us! (you do look ALOT like them!!)

  6. Jen Larson Says:

    Missed you at the dessert tonight. Praying for you!!! Hugs to you all! =)

  7. Patricia Hagsten Says:

    Wow! What a God! What an opportunity!


Tuesday, September 26, 2006

Pampering Ourselves

Paul called at 2:30 this afternoon to ask how Katy was doing today and we were in the midst of trying on fall outfits from last year, and taking stock of what was needed for this new cool weather we’re having. Earlier I painted her toes and fixed her hair so I told her daddy that we were doing great! We were playing! We were painting our toes, trying on clothes, giggling, and having fun. After I hung up the phone Katy said, “Mom, we’re having one of those days we promised ourselves when we were at the hospital.” Yes, we were. We were living our dream! It makes me want to climb a mountain to the very top, raise my hands, and shout, THANK YOU GOD!

In other big news, the PICC line is out. Nurse Becky explained the process to Katy, snipped the stitches, and began pulling. It took no more than 10 seconds to be free of the line that sustained Katy for the past 6 weeks. Katy and Becky hugged each other and got all teary. Becky said it was special for her because it was such a happy ending. Yes, it is!

Before:

After:

Comments:
  1. Heather Kirkwood Says:

    Woooohooooo! bye bye picc line! Praise God! And congrads on a truly wonderful day! I’m swamped, so back to the salt mine for me!

  2. Cecelia Says:

    HALLELUJAH, THE NAME OF THE LORD BE EVER PRAISED!!!

  3. Linda Kochendarfer Says:

    Katy,
    Talk about “before” and “after” shots! WOW! The ability God has given you to climb over obstacles is truly amazing. Reading that you and your mom painted your nails reminded me of Crystal and Candace’s collection of nail polishes; when you meet in early winter, make sure that’s on your agenda. It was so good to hear the strength of your voice on the phone last night. Have a great Wednesday and know we love and pray for you throughout the day.
    Mrs. K

  4. April Lang Says:

    I think I just gained 10 lbs by seeing that glorious dessert picture on your webpage! SO VERY VERY GLAD YOU ARE DOING SO GREAT!!!!

    Love you!

    April :-)

  5. Kristin Dunker Says:

    As always, I check your blog for updates, and am delighted by all the delight to be found on it lately! I just thought of you and your mom today as I’m planning an Autumn Tea Party for some ladies at our church. You two are the quintessential “tea party-ers”! I know you’re enjoying the beautiful weather we’ve been having… Happy Autumn! *Hug* from, Kristin

  6. Jess Lankford Says:

    Hey Katy!
    YEAAA! I’m so glad that you are rid of the PICC line! You look awesome in your picture! (I’m always thankful for a picture - it is so much fun to see how good you are looking!)

    I’m in FL without the kids - Josh had a conference for work to attend and I’m here with him. It’s so strange - I miss them so much - they are my sunshines…so even sunny florida isn’t quite as sunny without them!!

    Hope you continue to have a great week! When do you get to have that yummy chocolate cake? Can’t be long now!!!

    Love ya!
    Jes

Monday, September 25, 2006

Normal is Great

The best part about today was how normal everything was. Katy got up and took care of her medications and daily routine by herself. Then she took a nap. We went to the doctor this afternoon for another brief check up and came home for another nap. It was great! I got home from my evening walk and Katy had already fixed herself something to eat. She is doing so well. I am amazed by her energy today. The withdrawal symptoms ended by Sunday evening and she is completely free of pain medication. This is just the greatest normal day we’ve had in a long time and we thanked God for it several times.

I once saw a book called Normal Is Just A Setting On Your Clothes Dryer. But I think normal is so much more than that. It’s getting through the day by the Grace of God, and wondering why we aren’t more thankful for an uneventful “normal” day. Normal is a gift. We’re back to normal and our hearts are full of gratitude.

Comments:

  1. Julie Wensley Says:

    Normal? I’m not sure I know what that is exactly! I love the name of that book by Karen Hughes “Ten minutes from Normal”. I haven’t read it, but love the title. Most days I feel at least ten minutes from normal!

    Seriously, I understand what you’re saying. We do need to be thankful for everything, don’t we. Dawn, you have such a great way of communicating. I think it’s a special gift that you have to take the normal ordinary everyday things and help people to see God at work.

    Love you guys.
    Julie

  2. Karen Tillman Says:

    I don’t think you could have said that better. So an absolute Amen! to the definition of normal. Please tell Katy, that I said, “Hello, and I am so happy that recovery is back on track!!!” To God be the glory!
    Take care
    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: till3604@bellsouth.net

Saturday, September 23, 2006

Medical Alert Bracelet

I want to dedicate this entry to two special people. One is here on earth and one is now in heaven. When we were told to get Katy a medical bracelet to inform anyone in an emergency about her HPS, I happened to mention that to my friend, Lynne. Lynne said, “Don’t buy one, I have one I want to give Katy.” She came to the house and presented Katy with a beautiful 14K gold medical alert bracelet that had belonged to her own daughter. Lynne had taken the bracelet off of her daughter, Kristi, at the hospital because of some unusual and unexplained swelling. It was during that hospital stay that Kristi went to live in her eternal home with Jesus and the bracelet remained in Lynne’s purse for a year and a half.

Lynne was such a devoted mother, and cared diligently for her daughter until the Lord took her home. Lynne has been a wonderful example to me of pure motherly devotion. The same jewelry store that prepared the bracelet for Kristi buffed off the lettering and engraved all the necessary information that Katy will need in an emergency. I’ve looked at Katy’s arm where the bracelet now resides and thought of Kristi several times. Her life made us all better people. Thank you, Lynne.

Kristi and Lynne:

Comments:

  1. Cecelia Says:

    Dawn, Katy, and Family: This is just like Lynne to give love away! And, what a selfless act. Kristi’s memory lives on! Hallelujah to the Lamb of God Who gave it all in our place. Praise God for the change in vision! Continuing to lift you all up, daily, before the Heavenly Father, With love in Christ, Cecelia

  2. Annie Kibler Says:

    Hi Katy!!!
    I just received an email from Jenn today and she told me how you have really been through a lot in the past couple of months. I was shocked to hear this news and am glad you are feeling better now. (Just in case you don’t remember me…I am one of Jenn’s college friends and was one of the bridesmaids in her and Colin’s wedding. I really enjoyed meeting you! You are so cute and have wonderful personality.) Anyways, take care and you’ll be in my thoughts and prayers.
    Love
    Annie

  3. Karen Tillman Says:

    It is really great that you had a friend that could give you such a precious gift. Where would we be without good friends and support. Btw…..I would like to know what you finally decided to put on the bracelet. As there has been in the past quite a debate over the issue. Anyway, take care and good night.
    Love
    Karen Tillman
    Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Inc.
    NC phone # 336 954 3604
    NY phone # 1800 789 9477
    my email: till3604@bellsouth.net

  4. Julie Wensley Says:

    Kristi looks like such a sweetheart! What a wonderful thing that she is still a blessing today! How’s the next step down going?

    ~Aunt Julie

  5. Dawn Campbell Says:

    Hi Katy! I’m leaving you a message today to tell you how much I admire you for the courage you have shown the past few days. The shaking is over! The dependence is over! You are free from those chemicals now and it was so much fun to have you back in the kitchen doing dishes this morning! YEAH! Today would have been Kristi’s 28th birthday so anyone wishing to leave a comment that would bless Lynne, please do!

  6. Heather Kirkwood Says:

    What a neat story, and what a precious gift. Lynne’s gift turned something that can sometimes be sort of annoying (like when it doesn’t match your other jewelry or outfit) into something so special, treasured and a great story to share when ever anyone asks about the bracelet. Kudos Lynne! (and a big reminder for me that I need to get mine reordered! I keep forgetting to do it!!!! For shame!)

  7. Jess Lankford Says:

    Lynne - What an amazing gift! Kristi’s bracelet will be worn by one of the most Godly young girls I know. I could not think of a person better suited to wear something with so much sentimetal value. I will pray for you today - on Kristi’s birthday - that God will grant you an extra measure of peace and that His goodness will be evident to you all day long.

    Katy -
    Sorry you didn’t sleep well on Saturday! I’m glad that you got a chance to catch up yesterday! I read your xanga and you are definitly progressing! Shopping AND Chinese?? *GRIN* I love it!

    Jes

  8. Julie Wensley Says:

    Lynne - We are praying for God’s blessing and comfort on your life today. Thank you for your selfless act of love.

    Julie

  9. Barbara Walker Says:

    To Lynn and The Campbells,

    What a beautiful story and a beautiful picture!!

Friday, September 22, 2006

Progress Report

Things are progressing nicely. The first “step down” was complete and by last night Katy was no longer bothered by the quivering and temperature changes she had been going through. So, instead of putting on her next patch she decided to take the next step down! After the next three days she will be over this part of the process. The one funny thing she said about being on a lot of pain medication was that it was very handy when it came time to tweeze her eyebrows. It was painless!

Yesterday we visited her eye doctor. The spasms had affected her eyesight. She complained of eyestrain and blurred vision for hours after each spasm. Her glasses were not working for her. This was a concern and we went to find out what was going on. The vision in her right eye (her better eye) had improved! She is still legally blind in that eye, but her vision had improved enough that it was being overcorrected by her old glasses. So something good did come from those spasms!

In all these up and down times, we have had a constant peace settled over our home. It has been a real sanctuary for our souls. These early autumn days are such a treat. In His presence there is fullness of joy. At His right hand are pleasures forevermore. (Ps 16:11)

Comments:

  1. Jess Lankford Says:

    Hey guys!
    What a praise - that Katy’s eyesight has improved AND that the step down is going well! I’m so excited to hear your progrss Katy! Thanks for giving me the info on the clinic today - I think it will be amazingly helpful dealing with the situation. ;)

    Love ya!
    Jes

  2. Karen Tillman Says:

    Katy,

    WOW!!! I am so glad about the improvement in the right eye!!! However, I am not sure I want spasms to achieve that goal. GRIN I am so happy to hear about your daily improvement. God Bless you and your family during this time and always
    Karen Tillman
    Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Inc
    NC phone # 336 954 3604
    NY phone # 1 800 789 9477
    my email: till3604@bellsouth.net

  3. Candice & Crystal Sipe Says:

    Hi Katy! We are so glad to hear things are going well for you. We really miss talking to you. We are leaving to go to our church for a gospel singspiration tonight. So hopefully we can talk to you tomorrow and get caught up. Love you! Candice & Crystal

  4. Patricia Hagsten Says:

    What a praise regarding Katy’s eyesight.
    Having only one eye myself, I truly can relate.
    Lisa announced yesterday she has been transferred to Dallas, TX….in 2 weeks! Time to scurry!

Wednesday, September 20, 2006

Through the Valley

The effects of drugs on the human body are a mixed blessing. The pain relief drug Katy had been on was so wonderful during the worst pain she has ever known. Now it is playing with her mind like the pestiest mosquito on a summer night. We are staying busy tonight by researching things on the internet and carrying on conversations about our day. All of it is a distraction from the buzzing mosquito! This afternoon we stopped using Ativan so Katy could think clearly and stay awake. Now she is taking Tylenol and doing fairly well. The shaking is intermittent now; a sign that things are settling down from what they were during the night. If Tylenol alone will keep her comfortable that is a giant step in the right direction. In a few days the pain patch will be eliminated, and hopefully things will go as well as the first “step down.”

The healing forces in Katy’s body continue to soldier on. She is eating food and enjoying it. The pain during the night is much better and after the past 4 nights of sleeping sitting up, she is lying down again. The second dose of Nexium before bed has helped tremendously. We have been in touch with NIH and it appears we may be going to Bethesda the third week in October.

Katy’s shopping trip last night (via the internet) yielded a new camera. She has been saving for it and felt like it was time to make the investment. She is anticipating taking MANY pictures at NIH and of course there is the arrival of her baby niece or nephew in November. The “tough” really do go shopping!

Comments:

  1. Dottie Frazier Says:

    Katy, you look so beautiful in the picture taken Sunday. I am praising outr Great God for His healing. I go by your home on the way to Rainbow and I always offer up a prayer for you and your family. You are so blessed to have such a wonderful family and I know they feel bledded to have you. You are specill!!!

  2. Dottie Frazier Says:

    What typing!? Sorry

  3. Karen Tillman Says:

    Ah yes, shopping!!! Always works for me!!! GRIN Isn’t it wonderful to have a store right at your fingertips!!! Hang in there girl, it will all be better soon. And I am thrilled to hear about your upcoming trop to NIH. I am sure you will find it a little overwhelming at first, but as you settle in. You will come to find it the most secure feeling place on earth. I am always blown away at the knowledge that is housed in such a place. And the docs and nursers really do care!!! Btw….we joke that the acronym for NIH is Nurses In Heaven, as that is how the nurses there see themselves. Anyway gotta run. You take care girl.
    Love
    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 till2604@bellsouth.net

  4. Laura Griffith Says:

    I hate that you have to go through so many hoops to get better. I’m glad you have a goal in front of you for Oct. Just keep putting one foot in front of the other and before you know it…you are running :) Ya’ll are in our prayers.

Tuesday, September 19, 2006

Making Progress

As I write this, Katy is keeping herself busy by looking at cameras on the internet. She started quivering about noon today. She started the process of coming off the Fentanyl Monday and she was hoping to breeze through it. We were hoping for the same thing. We have other medication to use to get through this, but the fact remains that there are some things she will just have to push through. I found a great verse to enlarge and will have it placed around the house for a few days to help her focus on the mighty power available to her. Psalm 16:8 “I have set the Lord always before me. Because He is at my right hand, I will not be shaken.”

Katy has moved on in her internet seach and is now looking at cell phones. Have you heard the saying, “When the going gets tough, the tough go shopping?” I think Katy would say “YES!” to that.

Comments:
  1. Laura Says:

    YAY for shopping! :) I think shopping cures everything. hehe Have FUN!!!! :) :) :) :) Yay for cute smileys!

  2. Jess Lankford Says:

    Hey Katy!
    I’m interested in what you found out about cameras! I have a strong ‘desire’ for a new one - for Christmas….but I’m having a hard time wading through all the lingo and technical stuff!!

    I am praying for your withdrawl - we do have a strong God who is able to carry you through this!! I praise Him for your continued progress!! :)

    Jes

  3. Julie Wensley Says:

    I used a similiar verse when we went through a difficult move. Ps 62:6 “He only is my rock and my salvation: he is my defence; I shall not be moved.” That’s in KJV.

    In NIV it says “He alone is my rock and my salvation;
    he is my fortress, I will not be shaken.” Hang on Katy! You’re gonna make it.

    We are praying here. We love you.
    ~Aunt Julie

  4. Cecelia Says:

    Hi, Katy! Psalms 73:26 says, “My flesh and my heart may fail, but God is the strength of my heart [life, I believe] and my portion for ever.” Being physically in need, such as yourself, we gain strength by declaring, “but God” (God’s strength). Then, a “portion” is the small that WE consume; it’s no one’s else’s size, just ours. God cares about the small and the great. He PROMISES to meet your needs! Praying you through this transition, Hon, with love in Christ, Cecelia

  5. Patricia Hagsten Says:

    Hi Dawn!
    You’re such a loving mom…to all your kiddo’s.
    Shopping, maybe. Or maybe it’s time to distract and to get busy together baking whatever yummie it is that is pictured atop Katy’s blog page??? Just kidding!
    Prayer that you are, do you need me to stitch up some special knee pads with extra padding for all the time spent on your knees?
    God will see both you and Katy through and He will be glorified!


Monday, September 18, 2006

Thankful

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.

Comment:

  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!!!
    Love
    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: till3604@bellsouth.net

Thankful

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.

Comment:

  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!!!
    Love
    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: till3604@bellsouth.net

Sunday, September 17, 2006

Sunny Sunday

It was another pretty day. Church was great this morning. We have a kind and loving congregation at Wellspring Presbyterian Church, and it was good to worship together. The rest of the afternoon was spent with family and friends. I played a new board game with my brothers and sister-in-law on the back porch. The game was a birthday gift from Colin to Jenn. It’s called The Settlers of Catan and it’s a lot of fun. I am feeling free during the eight hours I am off the TPN. Paul Burton had to give me one little shot of insulin this afternoon, but my blood sugar has been stable the rest of the day.

This picture was taken yesterday. I have had such a wonderful weekend. I hope you did too.

Katy on the Breezeway

Comments:

  1. Heather Kirkwood Says:

    You’re looking great Katy!!!!

  2. Jess Lankford Says:

    Hey Katy!
    We love Settlers!!! :) I’m glad that you have been introduced to the game - now we’ll have to play!! Steve and Colleen are also in love with it! Colleen is very tricky though - she’ll act like she’s not paying atttention and than BAM!!! she wins the game!!

    I’m glad that you had a good weekend and that you are getting some time off TPN! (Is the plan still to be totally off by the end of the week?)

    Everytime we go past your house - Noah points and says “Katy’s house?? Katy’s house??” (We pray for you before bed I think he’s starting to make the connection - so exciting!!) :)

    Love ya!
    Jess

  3. Andrea Russell Says:

    Hi KATY,
    I just found out about your Blog!!! I hope your getting better and stronger each and every day. I havent been in church for a while but I’ll be back September 30th and I hope to see you there with your infectious SMILE !!!!!Take care sweetie and your in my prayers!

    Love Andrea

  4. Karen Tillman Says:

    Hey Katy,

    Isn’t it wonderful to be back in church!!! I know after a long illness how much it means to worship with others. I mean it is nice to worship at home, bt there is nothing like being in God’s house. I am counting our blessings everyday as you get better and better. I am at the hospital today and just had a few minutes and an available computer to check up on you. It is rather slow here today which is good. Gotta run for now.
    Love in Him
    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: till3604@bellsouth.net

  5. Carrie Thompson Says:

    Katy,
    You look great! That’s one nice skirt. :-)

    We are having so much fun at TI. Dad will join us Tuesday night.

    Love,
    Carrie

Friday, September 15, 2006

Short and Sweet

I only have a little energy and Mom has even less! Mom said, “Just tell everyone hello, we love you, and we’re doing great!” God Bless and goodnight!

-Katy

Comments:
  1. Laura Griffith Says:

    Just want to say “goodnight John Boy”…I mean Katy Girl :) Actually, I wanted to be the first to post for once. I’m sorry you were exhausted. I hope being off the TPN didn’t cause problems. I’m praying for you now. Sweet dreams….zzzzzzz

  2. Patricia Hagsten Says:

    Glad Dawn figured out the “patch” issue and your body is on a more even “keel”.
    Your mid-night prayer times really have become a blessing, haven’t they?
    Hope Paul forwarded the email I sent the other day….you may be a computer geek, but I’m more “computer challenged” and didn’t know how to email it to you directly.

  3. Karen Tillman Says:

    God bless you too Katy, and good night.

    Karen Tillman
    Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network
    NC phone # 336 954 3604
    NY phone # 1 800 789 9477
    my email: till3604@bellsouth.net

  4. Carrie Thompson Says:

    Dear Katy,
    We are all packed up here–I’m excited!

    I love you, Katy! I’m glad you fiquired out about the “patches”. We will keep on praying for you.

    Love In Christ,
    Carrie(& the rest of the family) :-)

  5. linda kochendarfer Says:

    Katy,
    Just got back from the twin’s house. What a terrific visit! We’ve taken pictures, had a personal concert and met their mom, dad, and brother Jody. They are truly an amazing family. We’ll give you all the details when we get home next week. The additional similarities in your families is even greater than the things you’ve already mentioned. Katy, we have counted it a privilege to meet them. Thank you for allowing us the opportunity to be a bridge between you and the Sipes. We love you and are really looking forward to seeing you soon. Adam, Alyssa, and Kristina are with me and say “hi.”
    Mr. and Mrs. K

  6. LInda Burk Says:

    HI..thinking of you…glad the line is out..and things sound wonderful………hugs, Linda and Jack

Thursday, September 14, 2006

More Prayer Time

Katy finished her update last night at 10 PM and I read it thinking about how much I loved just being home and calm all day. Then at midnight Katy started complaining about her chest hurting. She was also shivering and had a fever. I quickly checked her PICC line for infection and her arm for swelling. Everthing seemed fine. So I thought about what I was seeing and went to my computer to check on drug withdrawal symptoms. Sure enough, I read the withdrawal symptoms of the patch she had been wearing for pain, and she had most of them. I am so thankful for the internet. By it we are able to get the help we need from the National Institutes of Health, stay in touch with family and friends, and look up helpful information in the middle of the night allowing Dr. Davenport and her associates to sleep! We put another patch on Katy since we still had two left and within a couple of hours she had calmed down and slept the rest of the night.

Today our doctor worked out a “step down” plan for coming off the pain medication, but we sure would appreciate your prayers in this matter. We are hoping for the least amount of disruption to Katy’s system. This evening we also started the tapering of the TPN allowing Katy to be free from the nutrition line for 8 hours tomorrow. She is very much looking forward to that.

We have mentioned before that we use the time of wakefulness in the night to pray. We have had many opportunities to pray for the Larry Fenzel family. Larry was diagnosed 3 weeks ago with Leukemia and passed away last Thursday. This wonderful husband and father of 7 will be greatly missed in our community and we are also praying for Katy’s new HPS friend, Candice, who at age 26 has been diagnosed with liver cancer. There are many needs, not just ours, and we are so thankful that we serve a God Whose arms are great enough to carry us all in the hard times.

We started our prayer times at the hospital to get us through the night. We began by praying for all the elderly people we knew and loved. During another painful sleepless time we prayed for people raising small children. One night, Katy and I prayed for four hours for friends who had broken families and for friends who have children now in heaven. We continued by praying for the broken and the broken-hearted. I began doing this to keep Katy’s mind off her pain and when we talk about those times now she remembers the praying rather than the pain. We know that this situation we find ourselves in will bear a lot of fruit. Sweet prayer time with my daughter is only one of them. As my friend, Linda, prayed today, “There is always fruit produced in the valley.”

Comments:
  1. linda kochendarfer Says:

    Katy,
    Adam and I are sitting in the camping trailer while it is thundering and raining outside. We are at 7800 feet elevation. We took a walk today in Bryce Canyon where the elevation was 9100 feet! We are glad you will be off your TPN for 8 hours tomorrow. We are heading back to Phoenix in the morning. Adam says to say hello and he hopes you feel better soon.
    Mrs. K and Adam

  2. Candice & Crystal Sipe Says:

    Hi Katy!

    Isn’t it amazing how we are blessed with the gift of prayer? Prayer is such a powerful tool. It’s hard for us to understand why we have to deal with illness. Especially when we are serving the Lord. We know the Lord is in total control and that he knows our hearts and he knows our needs. He sees the other side of everything. Even though we don’t know the outcome of these situations. God does and he has a bigger and better plan for us and we just need to remember to have faith and put all our trust in him. We are so excited for you. What an encouragement to be getting weaned off the TPN. I’m sure you’ll be glad to be free for 8 hours.
    Hope you have a WONDERFUL night. It is after 12:30am AZ time, so I must be getting to bed. Talk to you tomorrow.

    Love your sisters in Christ,
    Candice & Crystal

  3. Jess Lankford Says:

    Dawn -
    Thank you for the post about prayer time! You have reminded me to look to heaven when things aren’t going my way. It sounds trivial - and I’m embarassed to admit it - but I’m a ‘chronic whiner’ and you and Katy have done so much to remind me of God’s goodness…even when I don’t see His hand immediatly! God is producing much fruit - in those who you come in contact with - just by you sharing your lives on this blog! Thank you for being open and vulnerable in a day and time when there is definitly not the norm!!

    I love you guys!
    Jess

  4. Karen Tillman Says:

    Isn’t it funny how docs tend to forget to mention the tiny little things like withdrawals!!! I guess they hope it doesn’t happen so they don’t mention it. I know you are right about the prayer and thinking of others. The one thing a hospital brings to my forefront is that there is always someone down the hall in worse shape. I think that is what has alwyas gotten me through the tough times. Keep looking up and all this will be over before you know it!!!
    Love


Wednesday, September 13, 2006

Quiet Day

It is 10:00pm and I’m about to go to bed, but I wanted to update first. Mom says there are friends and family that check this site every day, and being a computer geek myself, I know how disappointing it is not to see new updates on “favorite” websites!

Today was a slow and quiet day, exactly what Mom and I needed. Two nights ago, I stayed up until 4am, because I was having abdominal issues (Mom was with me, so she didn’t sleep either). Once I did fall asleep, I slept in until I felt energized (10am!), so I thought I was okay to go “on with life”. Well, I quickly learned that staying awake half the night is bound to catch up with a person’s body sometime…in my case sooner than later! I woke up this morning instantly knowing that I better keep my favorite blanket near me. Mom and I spent the majority of the afternoon watching movies, or in other words, catching up on sleep. While we both have tasks to accomplish, we recognize that days of rest are gifts from God, so we’re both thankful for the opportunity to sleep today. God knows our needs before we do and directs our days accordingly.

The other answer to prayer for today is my pain level. Yesterday, my Fentanyl patch “ran out”. Ever since I returned home, I’ve been wearing a pain patch that I changed every 3 days. Yesterday morning when the patch expired, I decided not to change it. I wanted to see if I could tolerate the pain without having to take such a strong narcotic. I was feeling wonderful yesterday afternoon when I visited Dr. Davenport, but she said that was not a good judge of how I would do in the future, because the dose lasts in the body for awhile. She said, “Wait and see how you feel tomorrow. Take some Lortab for breakthrough pain, as needed. If you get really bad, just return to the Fentanyl patch”. Today is almost over and I’ve not needed the Lortab or Fentanyl patch! I will take medicine if the pain gets too bad, but for now, I seem to be doing well. This is especially good news, because we lowered the steroid dose by another 10mg this week. Most of today, though, the pain has stayed between 1-3 on the 10 point pain scale….even after enjoying some delicious meals such as chicken and stuffing!

Mom and Dad spent the evening watching a movie together, so I stayed upstairs talking to friends online and emailing people. I have a goal to email everyone who has commented on this Blog. I’m so thankful for the daily prayers and words of encouragement that I want to write to you personally. Be sure to check your inboxes in the coming days, because you might get an email that is NOT spam! Wouldn’t that be a wonderful change??

-Katy

Comments:
  1. Julie Wensley Says:

    What a great rainy day for napping. I would have loved to join you! We’re praying for a great night tonight. Sleep well, dear Katy.

    I love you,
    ~Aunt Julie

  2. Carrie Thompson Says:

    Dear Katy,
    That’s great! We are leaving for the beach soon. :-) I hope to check your blog while we are gone! :-)

    You are still in our prayers & thoughts. Have a great day.

    Love,
    Carrie

  3. Lael Moreland Says:

    Hey Katy! What a wonderful picture you have up there. I’m sitting at school without breakfast and ready for lunch, and I’m staring at food and thinking of food and….oh never mind.
    Anyways, it was so good to see you for a few minutes yesterday! I wish I could have talked to you for awhile, but I thought maybe you were tired and wanted to go back to sleep. I would do the same! I hope that your day today is wonderful!
    Lael

  4. Crystal La Brie Says:

    Katy, I am so glad to hear your good news! I hadn’t read for a while so it was great to catch up on your pregress. I pray that things will continue to go well so you be able to have your TPN removed and be pain free. God bless you!

    Crystal

  5. Jess Lankford Says:

    Ahhh your mom comes through for the ‘katy-blog-groupies’! I love it! :)
    I’m glad that you are able to ditch the meds for a while - that is a really good sign! And you have such a healthy perspective on it - if you need them, take them! (That was my attitude during the birth of both kids - and I ended up with drugs and that was just fine with me. I wanted to just ‘try’ and I was able to do that and feel good about it.)
    I’m jealous of the movie watching and sleeping!

    I’ll get back to you soon about the articles - I am planning on working on the newsletter this evening!
    Love ya!
    Jes

  6. Davey Says:

    Hey Katy, that’s such great news, praise God!

  7. Karen Tillman Says:

    Hey Katy,

    I am so glad that today went well for you. And pain meds are certainly a drag as most of the time they leave you drained cranky and tired…..add that to the steroid, and sometimes you feel as though you will go insane!!! I am so thankful that you are continueing to get better, and will continue praying for you and your family.
    Take care
    Karen Tillman


Tuesday, September 12, 2006

Our Hallelujah Day

Today we were able to visit Dr. Davenport and it was such a good time. We really love her. Our first surprise was at the weight scale. Katy weighed in today at 92 lbs. That is more than she has ever weighed in her lifetime. She has always had a goal to reach 100 lbs, but no matter how much she ate her highest weight was 88 lbs. What a great surprise for her. It also means that the calories she is now able to eat are enough to sustain her, even though most of those calories come from baby food or soft foods. Therefore, Dr. Davenport talked about setting a goal to remove the TPN. I asked her what time frame she had in mind, and she gave us our second big surprise by telling us she could remove it in her office by the end of next week if Katy is still continuing to progress. What a hallelujah day! Katy was beaming all afternoon.

I know as I write this that many of you are going to have your own hallelujah moment. Many of you have lifted Katy’s name before the Lord and He has been so gracious. I know that things may not always go that way, but for this season in Katy’s life, God is showing her His healing compassion, and for those of you who have hoped for this outcome and have been praying for this news it is our joy to share it with you. Your prayers have been treasures to us. How can we ever say thank you enough?

Dr. Davenport made an interesting comment today. She said, “Man, you guys have a lot of friends. I just talked to another surgeon last week about another case and he wanted to know if I had heard the news that Katy is now eating chicken!” Several times at the hospital the nurses commented on what great friends we have! We are blessed by the care we have received from so many of you, and Katy has commented several times how much it means to her. That kind of care and concern has helped keep her attitude up, and ours, in some pretty hard times. God bless you all and have a great day!

Comments:
  1. Lynne Kilburn Says:

    Katy and Dawn,

    Wow, what a Hallelujah Day you’ve had!! My heart is over flowing with joy as I read your wonderful news on this very special day. It’s obvious that God has big plans for you in the future. Keep up the good work and it will soon be time for cake!!

    Love,
    ~Lynne

  2. Karen Tillman Says:

    Hey Katy,

    What great news!!! I know you will be happy to lose that IV line!!! They aren’t very fun to drag around for sure!! Each day I hear good things on your behalf and I am encouraged that you are on the road to recovery. Whatever you are doing keep it up, and yes, faith in God, the support of our friends, and a good attitude is what it takes to improve.
    Love ya
    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 till3604@bellsouth.net

  3. Laura Griffith Says:

    Way to go!!! Maryland isn’t far now :) Thanks for the congrats. I’ll pray you get to lose the TPN next week. Have a great day!

  4. Barbara Walker Says:

    To the Campbell Family,

    Hallelujah indeed!! The news just keeps getting better and better. What a testimony to God’s faithfulness!!
    All of you deserve this wonderful news!

    Love in Christ,

    The Walkers

  5. Cecelia Says:

    Dawn, the sweet love of Jesus just flows through you, and I am blessed to be able to read of your cheerful news: Katy’s weight gain, her steady improvement, a good doctor to set an attainable goal of IV line removal, the renowned testimony of supportive friends and, best of all, God’s abiding faithfulness. No one knows and experiences victory like the Christian whose eyes are fixed on Jesus! The world shares this day and rejoices with you. God bless the Campbell family!
    With love,
    Cecelia

  6. linda kochendarfer Says:

    Katy,
    All of us are sitting here at “base camp” in beautiful Utah. We are so glad to hear all the good news and hope we’re back in time to see the TPN removed. Our plan is to call the twins on Friday when we get back and go to see them Saturday morning. Mr. K is going to take lots of pictures to bring back to you; we’ll also try to get photos of their folks. We continue to pray for you even though we are far away.
    Love,
    Mrs. K


Monday, September 11, 2006

News From the Second Floor!

Hi everyone! Katy and I are in our computer room upstairs working on various things. Yes, Katy climbed the stairs last night! We moved several of her things out of the guest room hoping she would want to make the journey upstairs and she did it. One of her motivations for doing so had to do with her daddy. To best explain this I first have to tell you about the little foot long microwave heating pad called a “bed buddy.” The idea is to heat it up for two minutes in the microwave and take it to bed with you to warm your feet, hands, or use on tired, aching, muscles. Well, last week I heard Paul say, “Katy, we need to speed up your healing so mom can sleep with me. I miss my bed buddy!” You heard it here folks!

This morning at 5:30 I heard Katy call me from her room. I quickly made my way down the hall to find her sitting up in bed. She said, “Mom I’m hungry!” I was so grateful to God for those words! I went downstairs to warm a jar of baby oatmeal and it was so much fun to watch her gobble it down.

Our church “small group” met in our home last night so that we could be home to take care of Katy. Before they left, one of our friends offered to stay with Katy for awhile today so I could go out and run some errands. I have really appreciated those offers of help. When Trisha left this afternoon Katy said, “I tried not to talk her head off but she was just so much fun to talk to.” I just had to laugh. It was only 3 weeks ago that Katy asked me to speak for her when people asked questions because it was so tiring to answer. Look out world, Katy is coming back!

Comments:
  1. Sandy Says:

    Hey Katy!

    It is so great to hear how you are progressing each day. The computer I’m usually on doesn’t let me comment, so now that I’m on a different one, I just had to let you know how I excited I am to to hear about your improvements. God is good! I hope that baby oatmeal hit the spot.

    Love ya.

  2. Karen Tillman Says:

    Hey Katy and Family,

    I know that you are so happy to finally get back to a little normalcy!! It is so wonderful when God puts people in our lives that make our burdens lighter. I am so happy for you all and pray that Katy will continue to improve!!!
    Love
    Karen Tillman
    Regional Coordinator, Mid Atlantic USA
    Hermansky-Pudlak Syndrome Inc
    NC phone # 336 954 3604
    NY phone # 1 800 789 9477
    my email: till3604@bellsouth.net

  3. Mike Francis Says:

    Hi Katy and family:)

    Talked to Kelly a few days ago. She told me how Katy had been feeling and the circumstances. Just want you to know how much your family means to me. The love and kindness you have shown to me and my family cannot be measured in words. You are truly special people!

    I thought of you recently when my cousin Danny passed away. Thank you for thinking of us in that time of need. The card was lovely. Your support with my mother prepared me to handle the difficult task of saying goodbye to him.

    Just wanted you to know that I was thinking of you all. Will be in next weekend for Trey and Sierra’s birthdays:) 20th and 24th… Will try and come by to see you guys if it is not too much trouble k? We are thinking of you Katy and love ya bunches.

    Mike Francis…

  4. Danae Says:

    Great job, Katy!! I pray you will be able to make many more trips upstairs!

    I got your E-mail. I’m sorry I haven’t been on AIM in a while. I’ve been absolutly swamped! But I got a roommate on Sunday! Yay!

    I love you!
    Danae

  5. Jess Lankford Says:

    Hey Katy!
    Congrats on making it to the 2nd floor! You’re “moving up” in life! ;) Glad to hear that you are making continual progress! It was really great to see you at church on Sunday - you looked wonderful - sitting over there with your family! I’m glad that you were able to go worship. I hope it didn’t wear you out too much!

    If you get a chance - email me today - I have a question for you about the visibility of the overhead songs… :) Lankford_jessica@bah.com

    Love ya!
    Jes

  6. Laura Griffith Says:

    Loretta was delivered by C-Section on 9/11 at 5:44 PM. She is 19 inches and 7.5 pounds. Thank you for your prayers.
    Katie has a half-sister that was born five years ago on 9/11 at the same hospital, same room, and same situation of being the only pregnant patient.
    Now that your updated…I’m so glad you went upstairs. Hope coming down is easier. I’m very happy today :) Maybe it will be catching :)

    Praying for you,
    Granny Griffith

  7. Jennifer Blugerman Says:

    Katy, how wonderful it was to see you at church! How we have missed your face among us, each smile full of worship! Emma talked on and on about being able to sign the Lord’s Prayer for YOU! She has missed seeing you sign the worship songs. Congratulations on being able to eat a bit again and on scaling new heights in your home! :-) Also, FYI, Laura Griffith’s daughter, Katie, had her baby, Loretta, yesterday evening (9/11) by C-section. Larua is now officially a Granny! All are well. God is good!

    Love,
    -Jennifer B.

  8. Lynne Kilburn Says:

    Hey Katie!

    Now that you’ve made it to church, upstairs to your room and out shopping, I can see that chocolate cake getting here in no time! I’m ready when you are!!

    Hang in there kiddo!

    Love,
    Lynne

  9. Kim Says:

    Hi Katy!

    I wake up every morning and go to your blog to see how you are doing. I am so glad you are doing better. My family prays for you daily!
    I have spoken to your mom before on the phone. We just got our travel approval to go to China to adopt our daughter Faith Lan Ya. We will have her tested for HPS as soon as we get home.
    If you are bored and would like to check out our site, it’s at www.langadoption.com

    Many MANY Blessings! I look forward to reading more of your journal!
    Kim

  10. Kristin Dunker Says:

    So delighted to hear all the good news! Celebrating with you…~Kristin

  11. Gene & Shirley Murphy Says:

    Katy, We have been following the Blog and are so pleased to see your progress each day. We have been praying for you and your family and are so thankful to see what God is doing in your lives. We would like to come and visit or stay with you sometime when your mom needs to be away. I wanted to stop after church one
    Sunday but the nurse said your were sleeping.

    On another thought, a belated Happy Birthday to a great gal. You are an inspiration to so many, including me.

    Much love, and we hope to see you soon.
    Gene and Shirley


Saturday, September 09, 2006

Saturday Fun

This morning when we woke up, Mom said to me, “How would you like to go to Olde Salem Days?” (an outside craft show). Of course I jumped at the prospect of getting out and having some fun! Mom wanted Dad to go along, so he could push my new light-weight wheelchair. She also wanted to create some new family memories. Our agenda was not quite the same as Dad’s though; he came downstairs dressed in his mowing outfit! Mom kindly asked his permission to play instead of work and, fortunately for us girls, he agreed! So, off to Salem we went. The ride into town was beautiful and only added to the pleasantness of the excursion. Once we arrived, I sat in the wheelchair, while holding an umbrella over my head to protect me from the sunlight. The three of us “walked” down the streets of Salem looking at the many booths, oohhing and aahhing at our favorite exhibits. Dad even got a wonderful surprise! When we first arrived, we noticed old cars parked along one street. It turned out that at the edge of every street, there were 1930s-1960s cars displayed for people to admire and reminisce. Below is a picture of a 1961 Bugeye Sprite- the car Dad and Mom drove together when they first got married. Other treasures of our trip included 2 new Christmas outfits for my American Girl dolls, a delicious head of cabbage Mom got for a $1.00, and a bag of fresh green beans. Below, I’ve also posted a picture of me snapping the green beans…something I love to do! This “mini vacation” was such a treat…the kind of adventure that makes you want to pinch yourself to make sure you’re living in reality!

In other news, I ran out of lancets (the little sticks used to collect the blood for testing) for my glucometer a few days ago. Mom called several local pharmacies to get replacements and, after no success, decided to buy a new glucometer that was more standard. Paul Burton picked up the machine on his way home from work and I decided to get it ready for Mom. Little did I know how easy the machine would be use! By the time I had gone through all the “first time use” directions, I had tested my own blood sugar…including pricking my finger! Mom was pleasantly surprised and happy to give up the job. I was so excited about being able to do this myself that Mom jokingly cautioned me not to be checking it every hour. No chance of that!

The Bugeye Sprite

Katy snapping green beans:

Comments:
  1. Nancy Owens Says:

    Dear Katy - I am catching up on your blog and seeing how you are doing. Things sound so good. You are such an encouragement - a reminder to us of all that is truly important. I am writing this while sitting in Caree’s apartment in Bangalore, India. Yes, I am thinking of you while I am here - rushing through the streets trying to shop. We went out yesterday and bought groceries - such a challenge. Had to go to three stores to get stuff for baked spaghetti. Praying for you. So glad you are getting better. Love, Nancy Owens

  2. Jess Lankford Says:

    Katy-Lady!
    Reading your blog is one of the highlights of my day! I find that I am so often encouraged by the things that you share…You find joy in cracking beans - and it reminds me to find joy in those little mundane moments which really aren’t nearly as mundane as I would like to make them out to be! :) As I was reading about your outing - I thought of Anne of Green Gables - and smiled. Your outing to town reminds me of the way the ‘wide-eyed’ Anne viewed things when she first came to Green Gables. (I loved the Anne books growing up - so the fact that you remind me of her - well…it makes you a kindred spirit!) Don’t know where I’m going with this post - but wanted to let you know that I’m praying for you daily, I’m amazed by your spirit and courage, and can’t wait to see you again in church!

    Love ya!
    Jess

  3. Laura Griffith Says:

    It was so good seeing you “out” at Wellspring :) I wanted to say “HI” but you had so many wanting the same that I kept passing you by and then you must of went “bye bye” because I didn’t see you again. Hope it wasn’t too much for you. Actually, I’ve been to Salem days and if you can get through that, Wellspring is a cinch. Still in our prayers and still waiting on that grandbaby. :)

  4. Ryan Kirkwood Says:

    It is great to hear you are doing so well and having so much fun. That was a nice looking car your parents have good taste. Although it would look better in Red. Apparently my sister was to have given you my email so I will just leave it hear for you. Have a great day tomorrow and I look forward to hearing from you. ryaniankirkwood@yahoo.com

  5. Cecelia Says:

    Katy, what can I say? God is so immense! He’s so much bigger than even the breath we expel to say His name. How I glorify God for your life, and I share all the same beautiful blog messages in praying for continued healing, strength and patience. I am elated at the news of your Roanoke doctors, right down to the detail that God provided a reunion! That must have just “blown you & your Mom away”! Hallelujah!

    Continuing to lift you and your family in prayer,
    With Christian love,
    Cecelia

Friday, September 08, 2006

More Good News

We went to a Doctor’s appointment early this morning and had a chance to see one of Katy’s doctors who had not seen her since she left the hospital. This dear lady was such an encouragement and I think Katy’s good health may have surprised her! Dr. Emily Doherty has just moved to Roanoke with her husband, and she has had experience with HPS and worked in Bethesda with the doctors there who will be seeing Katy. Dr. Doherty has been helpful in putting a team together to manage Katy’s care here in Roanoke. We have had some great care for Katy right here in the Roanoke Valley and it has made all the difference in our ability to meet Katy’s needs. We are so thankful for that.

One of the great surprises of this morning happened when Dr. Doherty asked Katy to let one of her colleagues check a problem Katy was having with her knee. When the doctor came into the room I recognized her as the Indian woman who spoke Gujararti (Katy’s native language) to Katy when she first arrived in Roanoke and didn’t understand English. That was 18 years ago. Dr. Desai was just as amazed as we were. She had often thought of Katy and remembered her as a 4 year old in this strange new land. It was Dr. Desai who taught her to sit on a toilet rather than stand and squat as she did in the orphanage. It was a fun reunion and we all hugged in the end! And in other good news it appears that the damage to Katy’s knee during her spasms may heal on its own with time and exercise.

The recovery from this bout of intestinal inflamation is going very well. That means that by this time next week, if Katy is still eating 800 calories a day, her TPN will be removed for 8 hours a day. This news has her thinking. She said with a grin, “I just am happy about doing normal things like taking a shower, going places, and freedom.” Ah, thank God for the little things!

Comments:

  1. Linda Kochendarfer Says:

    Katy,
    My grandson Adam and my granddaughter Alyssa are with me while I type this. We have all just looked at the pictures of you on your blog. I am so happy you got to eat some chicken yesterday! How wonderful that you could also meet the doctor who helped you when you were just four. We miss you and are sending along a postcard of some pretty country we hiked in yesterday; Alyssa sends her love and Adam says hi to you. Know that we continue to pray for you each day and are excited God is blessing you with strength. We can’t wait to see you without your TPN backpack. Freedom at last!
    Love,
    Mr.and Mrs. K and Adam and Alyssa

  2. Carrie Thompson Says:

    Dear Katy,
    It is so wonderful to hear you are doing better! Won’t it be good to have that kind of freedom.

    ‘Round here everybody is in bed–the rest of the family is somewhere in Ketchican, AK!

    Lots of Love,
    Carrie

  3. Heather Kirkwood Says:

    Wow! It’s really amazing the doctors God has put in your path during this journey! I’m still just amazed that you’d find someone with experience with HPS so close to home. There’s no one in Kansas City that has any experience with it. My doctor and I just wing it together with the help of NIH if anything worrying comes up. And then to find this long lost connection - how amazing is that! Miracles do happen! Isn’t it funny how some people never notice the miracles all around them? But, I know you and your family have seen them all along this journey.

  4. Aunt Judy Says:

    Hey Katy!
    Chicken sounds good! It won’t be long ’til you’re eating all kinds of food! Yum!
    I was showing Uncle Todd the pictures from Granddaddy’s birthday party and when he saw the picture of Aunt Jackie, Heather and Laura he said, “Simon says, ‘Hold your ankle.’” That’s Uncle Todd for you.
    Love,
    Aunt Judy

  5. Karen Tillman Says:

    Hey Katy,

    I am truly thrilled at the progress you are making. Our god is truly an awesome God!!! Take care and will write again soon. Been up since 5am doing the yard sale thing!! Ugh!!!!
    love
    Karen Tillman