Friday, February 02, 2007

Being Carried

A few days ago Sara P wrote, “Let our prayers carry you through this time.” It certainly has! Katy is eating a little bit more today. It is a slow painful process, but it is still such a blessing to see her swallow and have her body receive nourishment. She even folded a little laundry today. Mom and Dad Campbell just stopped by and we had a nice visit with them. Her healthcare nurse just finished her IV Rocephin and she is sound asleep.

We are planning to take Katy to New York next weekend where she will have an opportunity to meet with several doctors, scientists, and other friends with HPS and their families. There is a once a year educational seminar and this year it is February 9-11th in New York. We need to make every effort, although we have been reluctant to commit to the trip not knowing if Katy was strong enough to manage it. Once we get there we will be able to meet face to face with many of the doctors and scientists we have spoken to by phone. Paul and I will have the added benefit of attending seminars for care givers of this disease and learn more about the treatments the doctors may try in the future. Our prayer is that we will be able to make the trip as comfortable as possible for Katy, and that she will be able to enjoy it.

Paul Burton is staying home with Katy tonight and Paul and I are going out on a real date. Going to the grocery store together isn’t classified in my mind as a real date. Tonight we are actually going to enjoy the evening together and not come home until we’ve stopped somewhere for a pot of tea and conversation. Yes!

Comments:
  1. Karen Tillman Says:

    Nothing like the month of Feb, and a few snowflakes to spark romance eh? No matter where you go, I am so glad that you guys can get away from it all. I think it is very important for those who care for us with HPS to also take care of themselves. If for nothing else but to regenerate, and be ready for whatever comes your way.
    I do hope Katy and you guys get to make it to conference, and I know there are lots of people like myself who are dying to meet you. However, we all understand that Katy’s needs should be met first. If worse came to worse, one of you could travel and take notes for the other, or better yet record the conference on video!!!! Electronics have certainly brought us many options that we wouldn’t have had in years past.
    We are arriving Thursday, and can hardly wait to get there!!!!
    Love Always
    Karen Tillman Regional Coordinator, Mid Atlantic, USA
    Hermansky Pudlak Syndrome Network Inc
    NY home office 1 800 789 9477
    NC office 336 954 3604
    my email till3604@bellsouth.net
    my website www.myspace.com/karenshpskorner

  2. Lillian Oliveira Says:

    Bravo, Katy! I’m so proud of you! You got that barium down and at least added on bit of info that there is narrowing at the end of the esphogas. I know that can occur with scarring and wonder if you’ve had an ulcerative lesion or some such thing there at one time. I don’t know if they’ve mentioned that those can be dilated, as a rule. But then, you’re HPS isn’t following the rules very well, so that may not be the remedy.

    I’m very excited that you are going to NYC to this Seminar and get to talk to the doctors, etc. there! That’s wonderful! I lived in NYC for about a year when I was doing my Master’s in midwifery. I got to visit many special place, including the Opera and Symphony and Ballet at Kennedy Center, Stamp’s steak house close to Times Square, went to a Yankee ball game, etc. etc. and worked at a private duty nurse at several hospitals. So say hello to NY for me! In fact, Rick and Judy and someone else came to visit me there, and grand-daddy Paul visited me, too, when he was on a trip through. Lois and George came at Easter time and George had a ball wheeling through all that NYC crazy traffic. Many memories - mostly good ones. I hope you bring back happy memories as well, and some new HOPE! I will be praying that your strength endure, and that your spirit will be blessed! Much love to all, Aunt LIl

  3. Sarah Meador Says:

    Katy what good news!!! My heart is made glad to hear that you have been able to eat some more today!! God indeed is carrying you through each and every day. What a joy it is to see Him at work as He enables you to eat. I pray that you will be strong enough and able to endure the trip to New York. What a great opportunity it sounds like! I know God will bless the trip if He enables you to go. It sounds as if it would be greatly beneficial for all of you. May God’s will continue to be done.
    Dawn, I hope you and Paul have a wonderful time out this evening and that it will be a time for you to refresh and rest together.
    Katy, thank you for the message today! I would love to see you again sometime soon! I will talk to you soon about that. :)
    Continually lifting you up in prayer to our great Father and Healer.
    Much love,
    Sarah

  4. Jennifer S. :-) Says:

    Hi Katy!!
    I’m so glad to hear that you’re eating more!! What an answer to prayer!! I hope that your New York trip will be a viable possibility and that you’ll be strong enough to go soon.
    Paul, Dawn, I hope you had a spendid time tonight!! :-)
    With love and prayers,
    Jen :-)

  5. Aleah Yunger Says:

    We weep with your sorrows and rejoice with your blessings. That is what I have noticed from reading this blog for the past few months. And again I marvel - what a picture of the Christian community, of God’s children - a true family! Dawn, hope you enjoyed your date night - glad to hear you’re getting some one-on-one time with your best friend :) What a blessing it is that Paul (Burton) can be around to stay with Katy while you go out! I’m sure that eases your mind. Katy, how wonderful food is!!! :D I’m so glad to hear you’ve been eating some. I will lift up the conference before our Father - if nothing else, Karen’s idea to video tape (or take notes) sounds like an awesome plan to me! Hope you had a wonderful night of rest. Love to you all, Aleah Marie

  6. Oma Collmus Says:

    Dear Katy and Dawn,
    I just got my computer back yesterday, so I haven’t been able to read my daily inspiration from you two very special people. Jackie sorta kept me up-to date the past week, but I was glad to read your happenings for myself last night. Dawn and Paul, I am sure your date last night was helpful and fun!
    How are you going to New York? If you drive I am probably a very good stopping-off place for a night or two. Dawn, you have been here but I will mail you directions once you decide to come. I have room for all three of you, so please come!
    Much love,
    Oma

  7. andrea russell Says:

    Hello Katy and Dawn,

    just wanted you guys to know I am always praying for you all. You have a good medical team as it sounds now, and you especially have a great prayer team. I know a church in Hot Springs they are also all praying for you. They read the blog daily too. We are all very excited that Katy is eating, even if it is a little bit. And the trip to New York, that is wonderful that you can talk to all those medical people.
    Having you in my heart
    Andrea

  8. Alicia Richardson Says:

    Hey Katy…it was sooooo good to talk to you last night albeit briefly. I so hope that you will be able to go to NY. U r going the weekend of my anniversary…..awwww. love yas!!!
    alicia

  1. Karen Tillman Says:

    Nothing like the month of Feb, and a few snowflakes to spark romance eh? No matter where you go, I am so glad that you guys can get away from it all. I think it is very important for those who care for us with HPS to also take care of themselves. If for nothing else but to regenerate, and be ready for whatever comes your way.
    I do hope Katy and you guys get to make it to conference, and I know there are lots of people like myself who are dying to meet you. However, we all understand that Katy’s needs should be met first. If worse came to worse, one of you could travel and take notes for the other, or better yet record the conference on video!!!! Electronics have certainly brought us many options that we wouldn’t have had in years past.
    We are arriving Thursday, and can hardly wait to get there!!!!
    Love Always
    Karen Tillman

  2. Lillian Oliveira Says:

    Bravo, Katy! I’m so proud of you! You got that barium down and at least added on bit of info that there is narrowing at the end of the esphogas. I know that can occur with scarring and wonder if you’ve had an ulcerative lesion or some such thing there at one time. I don’t know if they’ve mentioned that those can be dilated, as a rule. But then, you’re HPS isn’t following the rules very well, so that may not be the remedy.

    I’m very excited that you are going to NYC to this Seminar and get to talk to the doctors, etc. there! That’s wonderful! I lived in NYC for about a year when I was doing my Master’s in midwifery. I got to visit many special place, including the Opera and Symphony and Ballet at Kennedy Center, Stamp’s steak house close to Times Square, went to a Yankee ball game, etc. etc. and worked at a private duty nurse at several hospitals. So say hello to NY for me! In fact, Rick and Judy and someone else came to visit me there, and grand-daddy Paul visited me, too, when he was on a trip through. Lois and George came at Easter time and George had a ball wheeling through all that NYC crazy traffic. Many memories - mostly good ones. I hope you bring back happy memories as well, and some new HOPE! I will be praying that your strength endure, and that your spirit will be blessed! Much love to all, Aunt LIl

  3. Sarah Meador Says:

    Katy what good news!!! My heart is made glad to hear that you have been able to eat some more today!! God indeed is carrying you through each and every day. What a joy it is to see Him at work as He enables you to eat. I pray that you will be strong enough and able to endure the trip to New York. What a great opportunity it sounds like! I know God will bless the trip if He enables you to go. It sounds as if it would be greatly beneficial for all of you. May God’s will continue to be done.
    Dawn, I hope you and Paul have a wonderful time out this evening and that it will be a time for you to refresh and rest together.
    Katy, thank you for the message today! I would love to see you again sometime soon! I will talk to you soon about that. :)
    Continually lifting you up in prayer to our great Father and Healer.
    Much love,
    Sarah

  4. Jennifer S. :-) Says:

    Hi Katy!!
    I’m so glad to hear that you’re eating more!! What an answer to prayer!! I hope that your New York trip will be a viable possibility and that you’ll be strong enough to go soon.
    Paul, Dawn, I hope you had a spendid time tonight!! :-)
    With love and prayers,
    Jen :-)

  5. Aleah Yunger Says:

    We weep with your sorrows and rejoice with your blessings. That is what I have noticed from reading this blog for the past few months. And again I marvel - what a picture of the Christian community, of God’s children - a true family! Dawn, hope you enjoyed your date night - glad to hear you’re getting some one-on-one time with your best friend :) What a blessing it is that Paul (Burton) can be around to stay with Katy while you go out! I’m sure that eases your mind. Katy, how wonderful food is!!! :D I’m so glad to hear you’ve been eating some. I will lift up the conference before our Father - if nothing else, Karen’s idea to video tape (or take notes) sounds like an awesome plan to me! Hope you had a wonderful night of rest. Love to you all, Aleah Marie

  6. Oma Collmus Says:

    Dear Katy and Dawn,
    I just got my computer back yesterday, so I haven’t been able to read my daily inspiration from you two very special people. Jackie sorta kept me up-to date the past week, but I was glad to read your happenings for myself last night. Dawn and Paul, I am sure your date last night was helpful and fun!
    How are you going to New York? If you drive I am probably a very good stopping-off place for a night or two. Dawn, you have been here but I will mail you directions once you decide to come. I have room for all three of you, so please come!
    Much love,
    Oma

  7. andrea russell Says:

    Hello Katy and Dawn,

    just wanted you guys to know I am always praying for you all. You have a good medical team as it sounds now, and you especially have a great prayer team. I know a church in Hot Springs they are also all praying for you. They read the blog daily too. We are all very excited that Katy is eating, even if it is a little bit. And the trip to New York, that is wonderful that you can talk to all those medical people.
    Having you in my heart
    Andrea

  8. Alicia Richardson Says:

    Hey Katy…it was sooooo good to talk to you last night albeit briefly. I so hope that you will be able to go to NY. U r going the weekend of my anniversary…..awwww. love yas!!!
    alicia