Keep praying!

Katy is still in the hospital and needs your prayers. The veins have collapsed in both arms, so they are no longer able to give her hydro-cordisone or anything else by IV. She is in continual pain, has no energy and needs constant attention to keep her electrolytes balanced. Please pray that her adrenal system will kick in and begin to produce what her body needs. Pray for supernatural intervention. Pray for God’s mercy for Katy. We are praying for a miracle.

Qavah is visiting with her grandparents and is keeping them quite entertained, from what I understand. She continues to be a blessing and a joy.

We have been reading “The Heavenly Man” to Katy. It is the amazing biography of Brother Yun, a pastor in China who has been persecuted for sharing Christ. The stories of his torture and persecution are heart wrenching and yet his faith never wavers. It has been such an encouragement to read how God has used this persecution to produce a life of commitment to Christ and intense motivation to continue carrying the message of the Gospel around the world, at any cost. It helps keep everything in perspective.

Thank you, dear friends, for your faithfulness.
~Julie

I lift my eyes up to the mountains, where does my help come from?
My help comes from the Lord, the maker of the Heaven and the earth.
Psalm 121: 1-2

Comments:

1. Candice and Crystal Says:
   October 1st, 2007 at 1:09 am e

   Dear Katy,

   Our hearts go out to you and your family tonight. We are sorry that you are in a lot of pain. How miserable you must be. We pray the Lord will send you HIS healing touch so that you can feel better and get out of the hospital real soon. Don’t be discouraged, keep holding on to Phil 4: 13. Thats the verse the two of us use when we are going through health trials. As long as you have Christ, you can do ANYTHING!! You’ve been through a lot over the past year and HE will give you the strength you need to get through this. Thanks for keeping us posted Jule. Love your sisters in Christ, Candice & Crystal

2. andrea Says:
   October 1st, 2007 at 3:46 am e

   I dont know what to say, but that we are praying for all of you never ceasingly!!

   Love Andrea

3. Aleah Yunger Says:
   October 1st, 2007 at 7:53 am e

   Katy, what does this even mean? How could this make sense in God’s plan? We sing this song in Common Ground called Held — when they made an a cappella tribute CD for VA Tech after April’s tragedy, they selected that song to go on there. One part goes like this:

   “We’re asking why this happens / To us who have died to live / It’s unfair”

   and then the chorus…

   “This is what it means to be held / How it feels when the sacred is torn from your life / And you survive / This is what it means to be loved / And to know that the promise was / When everything fell we’d be held”

   Praise God that He is holding you in the midst of your trial. Please know what a beautiful beacon of God’s light you are, be it while eating a delicious meal or while in a hospital bed. I miss you and love you… Aleah

4. Jennifer Blugerman Says:
   October 1st, 2007 at 9:00 am e

   I admit that I have been struggling to understand the “why” in all that you are going through, Katy. I pray and find myself saying things like, “Lord, why are you allowing this to happen to one who clearly loves you so much, who follows you so closely, to one I know is especially close to your heart…” Then, of course, as I think these thoughts, I am immediately reminded of Christ who loved and obeyed the Father perfectly, and who was the very closest to the heart of God. Yet God allowed His Son to go through horrific suffering and death for His glory and our salvation. So, Katy, I know that somehow God is doing this for His glory and our benefit, and I can only imagine the glories and reward that await you who are suffering with such grace, such joy, and such trust in Him who is allowing it. Truly, …”now we see through a glass darkly, but then face-to-face. Now I know in part; but then shall I know even as I am known.”

   In His grip,
   -Jennifer

5. Jes Says:
   October 1st, 2007 at 9:27 am e

   Katy -
   We are praying for you too. I know this is a really LARGE bump in the road and that you are so miserable. We continue to pray for relief and supernatural intervention!

   We love you!
   Jess

6. Heather Kirkwood Says:
   October 1st, 2007 at 10:18 am e

   Dearest Katy,
   We continue to pray for you in Kansas. Hang in there girl!

7. Fairlight Says:
   October 1st, 2007 at 10:37 am e

   Oh, Katy…Praying for you, dear girl.

8. Doris Harriff Says:
   October 1st, 2007 at 10:46 am e

   Once again, it’s one of those times that I don’t know what to say, except that I’m still praying for you!

9. Sandy Says:
   October 1st, 2007 at 11:02 am e

   Prayers continue from here. I pray today is a better day and that the light clicks with her doctors about what to do next.

   And, I hope they can find some alternative site from which to administer IVs if Katy still needs them. I know a little boy who had an IV in the top of his head when the veins in his arms gave way! A weird thought but it did the trick for that little guy anyway.

10. Lillian Oliveira Says:
    October 1st, 2007 at 11:37 am e

    Dearest Katy, Dawn and all, I know you’ve been inspired and encouraged by the comments above, as I have, too. Thank you, Julie, for posting for us as we anxiously waited. For Sandy, scalp vein IVs are common in very young children, but in adults the veins are not usually that visible through the skin, which is very tough on the head. I’ve broken surgical needles trying to sew head gashes up! There are other IV sites, but probably would need a surgical “cut-down”, and I think that is something Katy doesn’t tolerate??

    Surely God is going to show us His majesty and glory with a miraculous resolution to this crisis! Remember the man blind from birth who was immortalized in the Word because his affliction was for the glory of God to be displayed. May His Name now be blessed and praised, that “all the ends of the earth may reverence Him.” Love and prayers, Aunt Lil

11. Karen Tillman Says:
    October 1st, 2007 at 1:02 pm e

    Dear Dawn,

    How awful to hear that Katy’s veins have collapsed!!! I have had that happen in the past, and usually they put in a central line to help. I must have checked this right before you posted last night, and actually prayed for Katy as I felt something was awry. Isn’t it amazing how God gives us those feelings!!! Katy girl, you hang in there, and I will pray for your pain to ease, and that God will comfort you through this difficult period. We miss your comments on the list serv, and can hardly wait until you are well enough to post again. Take care and know that I am praying for God’s mercy and healing for your body right now!!!
    Love and many prayers and ((((((((((A GREAT BIG HUG!!)))))))))))))
    Karen Tillman

12. Patricia Hagsten Says:
    October 1st, 2007 at 3:36 pm e

    Wow! Would think a central IV line would work …. but trust that her doctors know much more than I do.

    Continuing to pray for His grace and peace AND wisdom and passion for those attending Katy!

    Hang in there!!! Blessings!!!

13. Martha Harrison Says:
    October 1st, 2007 at 3:56 pm e

    Dearest Katy,
    God hears our prayers. He is our GREAT PHYSICIAN, but His ways are not our ways.
    My prayer is that He will relieve you of your pain and give you a miracle. We all want to see your body healed! We love you so much, Katy!
    In His grace,
    Martha H.

14. Sara Says:
    October 1st, 2007 at 7:06 pm e

    I have no words to say either, but know that we are all praying for you and that we love you dearly.
    Sara

15. Jes Says:
    October 1st, 2007 at 8:06 pm e

    Hey Katy-
    Ok - I have to confess - I’m a bit angry this evening - at HPS in general!!! My best friend and I used to have a saying ’sin stinks’ and since we are living in this fallen world - I can say with certanty this evening that ‘HPS Stinks’. I’m working on my study for tomorrow morning and a lot of it talks about the Judgement Seat - when we will have to give an account of how we have lived our lives. As I was reflecting - it started this current thought….about life in Heaven - with Jesus where there will be - no more diseases, no more collapsed veins, no more hunger pains….it will be glorious. I feel like I know a lot of the people who post here regularly who have HPS and my heart is aching for them and for you tonight….

    I am praying that you have some relief this evening.
    Jess

16. Jen L. Says:
    October 2nd, 2007 at 12:43 pm e

    I agree with Jess…HPS STINKS!! I’m glad I got to spend a few minutes with you on Saturday. I wish I could take all the yuckiness away and get rid of the pain and suffering for you. Prayers going up for you.

    Hugs,
    Jen

Friday Night

Katy is not doing well and could really use prayer for the jump start of her adrenal system. She was not responding well enough to the Salumedrol and by this afternoon her prescription was changed to hydro-cortisone. She prays constantly, not just for her own relief but for others. She waits for the relief that will come in time. We continue to pray for her doctors as well. They need special wisdom when drugs they’ve always used before don’t work the same on Katy.

Qavah had her transfusion and finished at RMH by 3 o’clock. She did very well and is much more lively tonight. In addition to Miss Jill spinning her magic, Qavah had a miniature DVD player waiting for her on her bed and she watched Shreck for most of the transfusion time. When the nurse came in she didn’t even look away from the movie but held her arm out for her blood pressure to be taken every fifteen minutes. She knows just what to do and is in step with the routine. The girls were just one floor apart with a stairway between their rooms. While Qavah cuddled up with a DVD and her blanket I was able to run up the stairs to Katy and help her wash and brush her teeth. Paul Burton came over to the hospital to help and it all worked out just fine.

The time we have together at the hospital is good. Katy discovered the cafeteria has soft chewy bagels and sent me for “take-out.” Both Katy and Qavah had cream cheese bagels for lunch. Julie is over at the hospital right now. I’m so grateful for her help and nurturing spirit. And in other good news, the lice are disappearing. I think we are on the up side of that challenge. Colin and Paul Burton are here this evening to try to get the lawn mowed. I am thankful again for all the love and support we are given. When people say, “I don’t know how you manage,” I usually reply,”By God’s grace and help from others.” There is no way we could do this if it weren’t for the help of friends and family. We are especially grateful for all of you.

Comments:

1. Doris Harriff Says:
   September 28th, 2007 at 8:18 pm e

   Sometimes I am disinclined to post a comment, because I just don’t know what to say. My heart aches for Katy. I am praying for you all.

   Glad to hear you are on top of the lice problem, though!

   Love, Aunt Doris

2. Karen Tillman Says:
   September 28th, 2007 at 10:47 pm e

   Dawn,
   I think you gave the perfect answer, cause without God’s grace, i think we would all surely fall apart!!! Again, I am sry to hear about the change in medication, and as I was thinking back over my young medical history…I think it took a coule of years to get things right the first time. Unfortuntely though steroids often have played a big part in the recovery process. Tell Katy, any prayers she can throw my way right now are certainly more than appreciated, and I will continue to fervently pray for her as well. i am glad that things went well for Quavah, and thought it was sweet that she and Katy both had bagels with cream cheese. Believe it or not that is also a favorite of mine, especially if my tummy is upset. Although, I usually have to leave off the cream cheese. Bummer for sure!!! Anyway, as usual it is late, and I am awake, asking for God’s peace to let me fall asleep without having to resort to meds. I tend to get a little stubborn about that at times, but have grown use to the “bumps in the road” as you call them.
   Love and prayers for you and your family,
   Karen Tillman

3. Jennifer S. :-) Says:
   September 28th, 2007 at 11:28 pm e

   Katy,
   I know God is with you, even though this valley seems dark. I pray that you find His light of comfort in it.
   love and prayers,
   Jen

4. Jennifer Blugerman Says:
   September 29th, 2007 at 7:51 am e

   Our hearts ache for you! How we long to see your family living once again in calm waters. We pray that the shroud around Katy’s body would be lifted — that her doctors would be granted insight as to how to treat her. But until then, we are praying that God will grant you peace which is greater than knowledge.

   -Jennifer

5. Patricia Hagsten Says:
   September 29th, 2007 at 8:56 am e

   How wonderful that His grace and comfort are sufficient …. and what a testimony your lives are in being so willingly open to His will and grace!
   What a blessing that this first transfusion experience in VA went so well for Qavah! What a blessing for both her and you. And, yes, we’re certain many of Katy’s prayers helped bring to fruition Qavah’s peace and calm.
   Bombarded on many fronts, we continue to pray for God’s insight, peace and calm for each of you …… as well as for new sunrise rainbows and seredipities along the way!!

6. Lillian Oliveira Says:
   September 29th, 2007 at 3:41 pm e

   How good it is for Katy to have some friends who are veteran warriors of this condition, who also trust in the Lord to get them through. Katy, I’m praying that you will get home for Sunday - that the steroids will kick in.

   But I believe my most urgent prayer is for a doctor, better, a team of doctors who will get a passion for getting to the bottom of- the real solution for, some of the malignant mysteries of this condition. I know that, in science as well as in the spiritual realm, God rewards those who passionately, intensively seek to find out the truth. He has a blessing for that doctor who is willing to invest himself in this disease, for Katy’s sake and the many others. Where, oh, where is that doctor?! Lord, we’re asking for a COMPELLING desire to strike the right one, so You can bless your world through him.

   We love you Katy! Aunt Lil

7. Patricia Says:
   September 29th, 2007 at 9:59 pm e

   Did Qavah have to spend the night last night at the hospital following her transfusion, or was she able to come home with you later??? (sorry, but since you haven’t yet been able to share here protocol and needs on the blog, we’re a bit uncertain as to what to expect).
   When does Paul return from Houston??? …. none too soon for you, I’m certain.
   Hope Katy is much improved by tonight.
   We just pulled into the driveway here in Kansas City less than an hour ago after a grueling week and driving over 2,500 miles once again.
   Time for bed … then up at 5 a.m. to shampoo/shower and be IN the choir by 8 a.m.
   Lots of love!
   Patricia & Ib

8. Candice and Crystal Says:
   September 30th, 2007 at 12:04 am e

   Katy,

   I’m so sorry to hear that you are back in the hospital and going through another bump in the road. We hope and pray you will be back on the smooth road again real soon. Please know that we are praying for you, that the Lord will give you strength to get through this health challenge. Keep your eyes focused on HIM.

   Love In Christ,
   Candice and Crystal

9. Heather Kirkwood Says:
   September 30th, 2007 at 1:18 pm e

   Hey Katy,
   I’ve been peeking in several times over the weekend. Thought I’d post this time and let you know we’re still praying for you and hope you are doing better.

10. Sandy Says:
    September 30th, 2007 at 2:27 pm e

    You all continue to be in my thoughts and prayers. I keep checking back for an update!

11. Lillian Oliveira Says:
    September 30th, 2007 at 8:42 pm e

    Dear Katy, for you and Qavah: (I see I’m on my second post, too!) The poem/song belong is one my Daddy and perhaps your granddaddy sang to me when I was little. I saw a wonderful picture of an old-time choo-choo train at a restaurant Saturday that Christian friends own. It evoked the memory of this little poem, and I was SURE that it said something about at “mighty wooden trestle”… turns out I was wrong! I had to ask Aunt Doris for the right words and she sent them to me; seeing that there was no sign of a “mighty wooden trestle” I said I was NOT SATISFIED! and in fun commissioned her to write me a verse that had one! And She DId! Look at verse two! Isn’t that great! If your Dad, Paul, doesn’t know the tune, I’ve already told Granddaddy that I’d like to enlist him to sing it to you, so you can sing it for Qavah. It has a catchy rhythmic tune.

    Chooka of the Stack

    How I love to watch the local winding up around the hill
    In the sunlight of the morning when the autumn air is still
    And the smoke-like loosen tresses seem to float along her back
    With the chooka, chooka, chooka, chooka, chooka of the stack.

    Refrain:
    Winding up around the track
    With the chooka of the stack;
    With the chooka, chooka, chooka, chooka, chooka of the stack.

    When the train has reached the hilltop with the valley down below
    And it runs above the treetops where the shining waters flow,
    There’s a mighty wooden trestle and the train rides on its back
    With the chooka, chooka, chooka, chooka, chooka of the stack.

    Refrain:

    How I love to hear the music of the whistle and the bell
    And the drumming of the furnace more than any tongue can tell;
    And the mighty massive mogul always seems to call me back
    With the chooka, chooka, chooka, chooka, chooka of the stack

    As you can see, I’m looking forward to fun times ahead for you sisters, as I continue to pray. Much love, Aunt Lil

Thursday Night

Katy is resting comfortably at RMH. Paul Burton is spending time with her this evening and the nursing staff has been wonderful. They have been giving Katy her electrolytes faithfully. Things have calmed down considerably since last night but Katy was hoping to be feeling much stronger by now. Her endocrinologist is going to be meeting with her in the morning. He is a kind man and nearing retirement. His listening skills are great, and Katy never leaves a meeting with him feeling diminished.

We have seen the Lord’s goodness all day. He is faithful to provide. When Katy’s food tray arrived it looked marvelous, but she said she didn’t have the energy to digest roast beef and mashed potatoes so the nurse’s assistant ordered her a light sandwich for later tonight. Katy thanked her repeatedly for doing that. Another nurse took Qavah around the eighth floor to smile and wave at people while Katy and I had some time alone to cry, blow our noses, brush her teeth, and put on a little lipstick. It was all good.

Paul is in Houston on business. We talked this morning and he said, “I’m in Houston but my heart is home with you and the girls.” All married men reading this blog should call their wives tomorrow and say something like that even if you aren’t in Houston. It made me smile about five times today. It was another gift of love that reminds me that God has surrounded us with good things and we must choose to focus on the all-surpassing greatness of His power at work in all circumstances. Sleep well friends, and know that you are helping us persevere through all these challenges.

Comments:

1. Karen Tillman Says:
   September 27th, 2007 at 11:51 pm e

   Dear dawn,
   I am just now getting around to reading late tonight. I wish I could say there are answers, but all of us with HPS seem to go through so many trial and errors, and some longer than others before arriving at any answers. My prayer for Katy is that she does not lose heart and that she continues to persevere with God giving her strength. I am battling the steroids effects myself right now and have been very sleep deprived which seems to be my major battle with the steroids thus far this time. However, the hardest part always seems to be going less than 20mg, so Katy is not alone in her battle, and I hope that brings her some comfort. I think and pray for all of you often, and will continue to do so.
   Love always
   Karen Tillman

2. Jennifer Blugerman Says:
   September 28th, 2007 at 11:28 am e

   We are praying that Katy is home soon!!!! We are praising God that her doctors are attentive and compassionate. We pray they will be given insight into how best to treat Katy! Please let us know how we can help!!

   -Jennifer

3. Heather Kirkwood Says:
   September 28th, 2007 at 2:24 pm e

   Dearest Katy,
   I can’t even imagine how frustrated you must feel. I can imagine maybe part of it. My body seems to be all out of whack right now, and I keep missing work, which only contributes to the stress, which makes my body more out of whack and so on. I’m so sorry you’re back in the hospital. Sheena is back in the hospital too - I told her some people will do just about anything for five star service and award winning food - HA! I hope you get out of “the joint” in good speed.

   I went to see my friend Annette last night. She’s back in the hospital getting her second round of chemo and she’s feeling so down too. She’s got pictures of her children taped all over her hospital room. Kelsey is in first grade, and her mom has taped all of those little work sheets that first graders do all over the room as well - she feels so cheated that she’s missing out on Kelsey’s first grade year. So, I went up to spend some time with her. She’s a big Grey’s Anatomy fan, so we had a Grey’s Anatomy premiere night party in her room.

   I wish I lived closer and I could go rent some Jane Austin flicks and we could have a Jane Austin night!

Persevering

* UPDATE: Katy is in RMH. She is being given Salumedrol by IV and will be there until she is stable. She hopes that means a couple of days. Thank you, Julie, for pulling another all-nighter!

Persevering is not for the faint of heart. It is a quality that requires a great deal of discipline. Tonight Katy is back at Roanoke Memorial, and Julie is there with her. I had been giving her round the clock care since the week before Remicade and tonight, with her electrolytes so out of whack, I called her physician and it was decided that I had done all I could at home. Katy is now over at RMH having some tests done to determine her adrenal function and electrolyte levels. I am home praying for her. She is so discouraged. She is forced to keep her medical care a top priority when she would rather be doing for others. Every day away from her computer is another day of falling behind in her studies. I ache for her. She is trying so hard in every way to beat these setbacks. She trusts God so completely and would much rather be free of the cares of this world, but she perseveres knowing that her tasks here are not finished.

We are praying for divine revelation for Katy’s doctors. We wonder why her cells are not using the huge amounts of potassium, magnesium, and calcium we are giving her. We wish with all our hearts that someone somewhere would take enough interest to take the knowledge we have gained over the past year, and study it. We suspect many of these problems are related to the steroids and would like to pursue every method of getting her off of them. We have more questions than answers right now. We appreciate the many words of encouragement on yesterday’s post. You have also hung in there with us and persevered in prayer. Tonight our prayer is as simple as this, “Lord, show us your glory; wow us with your power for your own name sake!” Amen

Comments:

1. Patricia Hagsten Says:
   September 26th, 2007 at 11:01 pm e

   Oh how our hearts ache for Katy and for YOU TWO!!! (not too … meaning you two parents!!)

   Just got internet access up here in the hills of Wisconsin for a few minutes.
   I wish we could help point you in the direction for help …. but then, you KNOW where and WHO the help is!!! Yet, it requires human knowledge, and human hearts and human hands to accomplish HIS perfect will.

   Please, oh please, remember that God is not surprised by any of this …. even when you are and Katy is …. this once again rears the ugly question of the whys of suffering … only know that it will work for His good and His purposes.

   Our human arms around you …. encircling the computer …. just visualize, P & D. Love all of you guys. And praying also for Qavah through this stressful time for her new sister … it HAS to be unsettling for her in her new surroundings. Prayers for you … that you won’t be faint of heart AND that he will give you the peace and calm and strenth to face things one step at a time!!

   Patricia

2. Doris Harriff Says:
   September 27th, 2007 at 8:49 am e

   I am praying, too, for a revelation to Katy’s doctors. I wonder if there isn’t something else that could replace the prednisone, and would not have the serious side effects. I don’t know if it’s Katy’s disease, or something else unique in her body that has caused the prednisone to have more than the normal side effects; a lady in our church is taking prednisone, the same strength as Katy’s for her arthritis, and she was told you can take it for a year with no lasting side effects. We know this is not true in Katy’s case. Let’s hope that the Lord will use her suffering to cause discoveries to be made that will help future sufferers from this disease.

   Aunt Doris

3. Sandy Says:
   September 27th, 2007 at 9:12 am e

   Please tell Katy she’s in my thoughts and prayers, and I’m sending along lots of hugs. I hope the doctors can get to the bottom of all this soon. I have had electrolyte issues myself because of a pituitary disorder, so I know how sick a person can feel when things are out of whack.

4. Sandy Says:
   September 27th, 2007 at 1:06 pm e

   Dear Campbell Family,

   Last year on 10/10/06 I receive your blogsite as an urgent prayer request from a Moms In Touch friend of mine, your friend Sara. Since that day I’ve checked the blogsite faithfully, although not commenting, but praying for and with you, and rejoicing over the good days with you too.

   Today I read your site and as I often do afterwards I checked www.LIVINGPROOFMINISTRIES.BLOGSPOT.COM
   I wish I could copy the whole post and send it, but I don’t know if that’s allowed, so I will send the scripture Beth used today. I hope this will give you courage and strength.

   “So do not throw away your confidence, because it has great reward. For you need endurance in order to do God’s will and so receive what is promised.” (Hebrews 10:35-36 NET)

   ….”All surpassing power abides in your jar of clay. Do not shrink back. The God of the Universe looked the world over and found you” (as posted)….

   “But you, keep your head…endure hardship, do the work…discharge all the duties of your ministry.” 2 Timothy 4:5

   to read her whole encouragement go to the blogsite and the post on WEDNESDAY, SEPTEMBER 26, 2007
   “A QUICK WORD ON MY WAY TO THE MOUNTAINS”
   POSTED BY BETH AT 5:34 PM

   With Love and Prayers for perseverance, deep confidence, hope, endurance, peace, healing and sweet rest in the Arms of He who is able.
   ~Sandy

5. Lillian Oliveira Says:
   September 27th, 2007 at 6:08 pm e

   I say a big AMEN to my sister Doris’s last sentence. And I remember again that “In ALL their affliction, HE was afflicted and the angel of His Presence saved them.” I pray that Katy and all the family will feel the loving Presence of God the Father and Jesus the Son as a warming glow around you and in you as you struggle through these days. I pray for a wonderful night’s sleep for you Dawn, for peace for Paul, away on his trip, and a good night for Katy, Qavah and Paul Burton. I pray that the louse problem is behind you and I pray, Dear Lord, for a whole row of those wonderful, marvelous, blessed NORMAL DAYS! Love, Aunt Lil

6. Doris Harriff Says:
   September 27th, 2007 at 6:18 pm e

   My friend “Preacher” posted this on the discussion board Spiritually-Speaking (formerly The Upper Room) after reading the previous blog entry:
   “People that “think” they have problems, can really be brought down to earth in a hurry by reading this.”
   Aunt Doris

7. Jennifer S. :-) Says:
   September 27th, 2007 at 7:42 pm e

   Katy,
   My family and I will be in prayer for ya’ll tonight. God is great and He will bring you through this valley.
   love and prayers,
   Jen

8. Aunt Carrie Says:
   September 27th, 2007 at 9:32 pm e

   Katy et al,
   My colleague at work was feeling pretty tired after working until 10:00 two nights in a row to finish a project. Sounds pretty pathetic after your all-nighters. How disappointing to have the Remicade work :~) but have the endocrine system not work :~( Balancing the teeter-totter is frustrating. You are in our thoughts and prayers.
   Love,
   Aunt Carrie

Prayers needed

I took Katy to the doctor today with a fever and shortness of breath. After a chest x-ray and an assessment of her condition it was decided to give her an antibiotic and push her prednisone up to 60 mg for the next three days. We are not sure what is going on but a cough has developed suddenly although her chest x-ray showed clear lungs. The doctor of course is concerned about her adrenal system handling this challenge. She has been shaking all day. She couldn’t get up the stairs by herself which suggests to us that her adrenal glands are in trouble. So call upon the Lord in this day of trouble and we will keep you informed. Our strength is small tonight, but our heavenly Father knows that. Thank you for your prayers.

Comments:

1. Lillian Oliveira Says:
   September 25th, 2007 at 8:42 pm e

   Dear ones, SO VERY SORRY TO HEAR OF THIS NEW COMPLICATION! My heart cries for Katy, and I will be crying to the Lord tonight. May she be held in the arms of Jesus, and may He HEAL her adrenal glands, Oh, Father, I pray, in Jesus’ dear Name. Love you all, Aunt Lil

2. Jes Says:
   September 25th, 2007 at 8:49 pm e

   Oh Dawn - I’m sorry! We will be praying for Katy and for all of you this evening. I know you all are worn out. I know that this latest set back is especially hard following on the heels of yesterday’s sucessful Remicade treatment.

   Remember who you are - you, my friend are a Proverbs 31 woman and your ‘arms are strong’ for the tasks set before you. (vs.17) We love you all so much and lift you up before the throne this evening -

   Jess

3. Trisha Ferris Says:
   September 25th, 2007 at 9:14 pm e

   Dear Campbells,
   The daily ups & downs of Katy’s health are staggering. I am praying for all of you. I thank God for you & I entrust you into His loving & wise hands.
   In the Lamb,
   Trisha

4. Martha Harrison Says:
   September 25th, 2007 at 10:01 pm e

   Dawn, please know that I, too, am praying for Katy in this latest set-back. My heart hurts for all of you. Our God is faithful and will not leave you comfortless. Love in Him,
   Martha

5. Karen Tillman Says:
   September 25th, 2007 at 10:21 pm e

   Dear Dawn,
   Please let Katy know that I am thinking and praying for her. I am truly saddened to hear the news about the steroids, as I am tapering myself right now. I hate those things, but they have kept me alive so I guess I shouldn’t complain to much. I know she was so looking fwd to Thursday, and I hope that she is wstill up for the task. Please give Katy a hug from me, and I hope she will soon be back on the path to healing yet again.
   Love and many prayers
   Karen Tillman

6. Linda Kochendarfer Says:
   September 26th, 2007 at 9:09 am e

   Katy,
   My grandson Adam and I are reading the blog. We are so sorry to hear that you are feeling bad again. Please know that we are going to immediately pray for you and your family. We love you and will think about you all day.

   Love,
   Mrs. K and Adam

7. Sandy Says:
   September 26th, 2007 at 9:13 am e

   You can count on prayers from here. I hope today is a better day.

8. Doris Harriff Says:
   September 26th, 2007 at 9:16 am e

   I’m praying that the Lord will touch Katy’s adrenal glands and that they will start functioning properly, so that she can get off the prednisone completely.
   Aunt Doris

Prayers needed

I took Katy to the doctor today with a fever and shortness of breath. After a chest x-ray and an assessment of her condition it was decided to give her an antibiotic and push her prednisone up to 60 mg for the next three days. We are not sure what is going on but a cough has developed suddenly although her chest x-ray showed clear lungs. The doctor of course is concerned about her adrenal system handling this challenge. She has been shaking all day. She couldn’t get up the stairs by herself which suggests to us that her adrenal glands are in trouble. So call upon the Lord in this day of trouble and we will keep you informed. Our strength is small tonight, but our heavenly Father knows that. Thank you for your prayers.

Comments:

1. Lillian Oliveira Says:
   September 25th, 2007 at 8:42 pm e

   Dear ones, SO VERY SORRY TO HEAR OF THIS NEW COMPLICATION! My heart cries for Katy, and I will be crying to the Lord tonight. May she be held in the arms of Jesus, and may He HEAL her adrenal glands, Oh, Father, I pray, in Jesus’ dear Name. Love you all, Aunt Lil

2. Jes Says:
   September 25th, 2007 at 8:49 pm e

   Oh Dawn - I’m sorry! We will be praying for Katy and for all of you this evening. I know you all are worn out. I know that this latest set back is especially hard following on the heels of yesterday’s sucessful Remicade treatment.

   Remember who you are - you, my friend are a Proverbs 31 woman and your ‘arms are strong’ for the tasks set before you. (vs.17) We love you all so much and lift you up before the throne this evening -

   Jess

3. Trisha Ferris Says:
   September 25th, 2007 at 9:14 pm e

   Dear Campbells,
   The daily ups & downs of Katy’s health are staggering. I am praying for all of you. I thank God for you & I entrust you into His loving & wise hands.
   In the Lamb,
   Trisha

4. Martha Harrison Says:
   September 25th, 2007 at 10:01 pm e

   Dawn, please know that I, too, am praying for Katy in this latest set-back. My heart hurts for all of you. Our God is faithful and will not leave you comfortless. Love in Him,
   Martha

5. Karen Tillman Says:
   September 25th, 2007 at 10:21 pm e

   Dear Dawn,
   Please let Katy know that I am thinking and praying for her. I am truly saddened to hear the news about the steroids, as I am tapering myself right now. I hate those things, but they have kept me alive so I guess I shouldn’t complain to much. I know she was so looking fwd to Thursday, and I hope that she is wstill up for the task. Please give Katy a hug from me, and I hope she will soon be back on the path to healing yet again.
   Love and many prayers
   Karen Tillman

6. Linda Kochendarfer Says:
   September 26th, 2007 at 9:09 am e

   Katy,
   My grandson Adam and I are reading the blog. We are so sorry to hear that you are feeling bad again. Please know that we are going to immediately pray for you and your family. We love you and will think about you all day.

   Love,
   Mrs. K and Adam

7. Sandy Says:
   September 26th, 2007 at 9:13 am e

   You can count on prayers from here. I hope today is a better day.

8. Doris Harriff Says:
   September 26th, 2007 at 9:16 am e

   I’m praying that the Lord will touch Katy’s adrenal glands and that they will start functioning properly, so that she can get off the prednisone completely.
   Aunt Doris

Monday Night

I am now home from the hospital and getting ready for bed. The Remicade is working. I am feeling especially grateful tonight! Thank you for your prayers- not only for today, but this past week. With your prayers and God’s sustaining power, I was able to make it through another difficult time. Be sure to visit Katy’s Musings for an additional update and pictures from Remicade Day.

Tomorrow, Mom will be taking Qavah and me to Carilion Labs for blood draws. Based on observation and how many weeks Qavah has been in our home, we believe her monthly transfusion will be this week or early next week. A blood draw will give us the answer. Since I am taking Imuran, I have monthly blood draws to ensure my liver and kidneys are working properly.

Comments:

1. Patricia Hagsten Says:
   September 24th, 2007 at 10:35 pm e

   Hallelujah! Thank God for Remicade!
   May the Great Healer walk with yu and Qavah once again tomorrow.
   Greetings from Wisconsin!
   Today we mailed a package to your folks … really a little “welcoming something” for Qavah.
   Patricia

Sabbath Day Work

**Katy’s Musings has been updated**

I’m glad that Sabbath laws are now covered by grace. As stubborn as these lice are, had I taken today off from working on laundry, scrubbing, and treating our hair, I’m sure the bugs would win. I have not let up for a single day and yet found evidence of lice on the girls. Paul worked on my hair all afternoon finding the small pests. I am ready for a head shave and told Paul so. He worked harder than ever to rid my head of every nit. Meanwhile, we are doing all we can to get Katy through to her Remicade treatment. She has been miserable most of the day and is not wanting to eat anymore. The digestion process is so painful for her that she starts to tremble a few minutes after swallowing. I can not imagine how difficult it is to be hungry and not be able to tolerate the digestion process. We just have tonight, and thankfully there is a drug like Remicade to give her some relief tomorrow.

We didn’t get to church this morning but Paul and I, together with the girls, had a worship and prayer time together. It was lovely. A quiet morning of worship fed our hungry souls. We are ready for a new week.

Comments:

1. Jennifer S. :-) Says:
   September 23rd, 2007 at 7:10 pm e

   Katy and family,
   I pray that you find relief from the lice soon! I pray too that Katy’s treatment will come quickly so she can get to feeling better soon. I’m sorry I haven’t been commenting as faithfully as I used to–I still read each day though. Life is just kind of busy right now. Katy, I’d love a Jane Austen night–just let me know when you feel up to it! I’ll kidnap Lael and bring her with me.
   Love and prayers,
   Jen

2. Patricia Hagsten Says:
   September 23rd, 2007 at 8:29 pm e

   We pray for relief … from lice and from pain!
   Tonight our congregation voted 330 to 22 to request of Hearthland Presbytery to be dismissed with property from the PCA to the EPC. We have 575 members; any student away on campuses and everybody who is out of town is disenfrachised in this part of the process. No proxy votes are allowed. Now it’s up to presbytery as to whether or not they will accept our request.
   Have a good week!! I & P

3. Martha Harrison Says:
   September 23rd, 2007 at 8:51 pm e

   You are truly a blessing, Dawn! I haven’t written lately because we have been busy and enjoying our two grandchildren who have entered VaTech this fall. They have paid us a few visits, as well as their Mom and Dad (our daughter, Susan and son-in-law, Rick). It is so good to have Maleka and Randy close by! Yes, we know a little something about those pesky pests called lice!. Susan and Rick have been through the same experience with our four grandchildren who brought them home from school!
   You have made my day with your wonderful attitude and sense of humor at such a trying time. Jennifer’s poem is priceless! I am praying that Katy will feel so much better after her Remicade treatment tomorrow. Everytime we pass your house, we think about little Qavah and what special parents you and Paul are to give her a loving Christian home. I hope to get by to see all of you sometime this fall. God bless you all!! I have been smiling all the way through your posts as I have caught up with what’s going on in your life right now. You are a Christlike example of how we all should handle our trials and daily inconveniences!! In His love, Martha

4. Heather Kirkwood Says:
   September 24th, 2007 at 12:03 am e

   Katy, Happy Remicade Day tomorrow!!! I’m hoping my magazine will go to press this week and I’ll get some relief, be able to return the e-mails piling up in my box etc. I’ve worked all weekend for the third weekend in a row! This just isn’t right. Of course, missing all of this work for health issues doesn’t help - but I need a weekend off!

5. Jennifer Blugerman Says:
   September 24th, 2007 at 6:42 am e

   Dawn, we are grieved that you continue to fight the lice and are praying that they are soon history without your needing to cut your hair! Your patience and forbearance in the matter is amazing, as always. I’m so glad that Monday is here and Remicade is on the way! We anxiously await your next post, praying that it brings news of better days!!

   -Jennifer

6. Sandy Says:
   September 24th, 2007 at 8:42 am e

   Happy Remicade Day! I hope the treatment goes smoothly and you all get lots of rest this week.

7. Doris Harriff Says:
   September 24th, 2007 at 9:05 am e

   Dawn, thank God for Remicade day!

   I am praying for the total eradication of those nasty lice. I am treating this as though it were (which I fully believe) another attack of Satan on your lives, because your great faith and faithfulness are causing him great harm.

   As for “working on the Sabbath,” even under the OT days, it was good & right to lift your ox out of the pit he had fallen into on the Sabbath.

   Just a mention, but I’m sure you’ve already thought of this and addressed it - just make sure that your vacuum cleaner isn’t harboring those little nasties!

   Aunt Doris

8. Fairlight Says:
   September 24th, 2007 at 8:43 pm e

   I’m sure you’ve heard of and tried every lice remedy known to man at this point, but just case you haven’t , my mom says her friends swear by smothering them with shortening. They say to massage it liberally throughout your hair, cover it with a shower cap, and wear it that way for 24 hours before washing it out…

   Hope you can manage to conquer the pesky little creatures soon!

The good things

Katy was awake during the night for pain medication and electrolytes. We had plenty of both on hand. I am thankful that her Remicade treatments do work. After Monday’s treatment she will have some great relief. I am also thankful that Qavah is doing well. She enjoys helping around the house and especially likes sorting. She likes unloading the silverware from the dishwasher, and we’re happy to give her the job. I’m having a grateful day. I was thinking as I carried our bedding to the laundry room that I’m very thankful for electricity and the washer and dryer. I am thankful for my vacuum and bug spray. I’m thankful for hair products and lice combs. All of these things have made the lice clean-up so much easier! I was thinking that in the next two weeks Katy will have had her Remicade, Qavah another transfusion, both girls should be feeling well and the lice will be gone. I’m thinking of having an early Thanksgiving celebration at that time. As I look over my post, I can see I have been doing a lot of thinking. And through God’s power, that is greater than my own, I am being encouraged to think about the good things to come. Jennifer’s poem adds a whimsical mood to the problem of lice and is very effective. I’d like to see that poem illustrated and hanging in the pediatrician’s office! (for Jennifer’s poem, read yesterday’s comments.)

Comments:

1. Sara Says:
   September 21st, 2007 at 1:33 pm e

   Every time I do laundry I’m thankful for my washer and dryer, also. I’m glad that I don’t have to take it down to the stream and beat it on the rocks. I am also thankful for friends who teach us about God’s love and strength in times of great need and also in times of everyday chores. You are a blessing to me and having a friend like you is a very good thing!
   Love,
   Sara

2. Patricia Hagsten Says:
   September 21st, 2007 at 4:01 pm e

   Amen to the one above!
   Having spent many days (yes, and weeks) on Amish farms in WI, IL, MN, MO, IN, MI, KS, IA within the past year, I can really truly be grateful for modern conveniences …. I really can’t fathom how people in Africa or in underdeveloped areas of the world can so easily take things like lice infestations in stride. But then, missionaries in the field sometimes sleep up in trees so they won’t be attacked by wild animals, etc. A world apart, yet so near in prayer.

Lice aren’t nice

Although Katy is having to take some strong medication to keep her pain under control, she is still hanging in there with me and fighting the lice with all her might. Today I took Qavah to the pediatrician and had her examined for lice. I got them all! I found the crab lice hiding in the rim of her ear and packed her ear rim with Vaseline. She has patiently endured all the soakings and treatments. Imagine how happy we are that the results were an “all clear.” When the doctor came into the room she said, “Qavah, you’ve had a haircut!” When I explained the reason she said, “Shaving the head is the very best way to deal with it but most people won’t do it.” I guess it was a matter of time management for me. As some of you have noted in your comments, getting rid of them is time consuming.

Thank you all for your comments and prayers. Katy is counting down the days to Remicade Day. I am counting down the lice as I suck them into the vacuum with glee.

Comments:

1. Patricia Hagsten Says:
   September 19th, 2007 at 9:35 pm e

   Lice are definately no fun!!! Been there, done that!! The cost of cleaning each and every piece of upholstered furniture, every inch of every carpet, and every singel pillow is also horrific!! Once I got it, apparently from the headrest in an airplane and I know that it can be maddening …. and often the results are not as squeeky clean as hoped. Some toy or doll or something that has fallen behind or under a piece of furniture can have lice lurking therein. So don’t despair if you have to go through the entire process repeatedly.
   The reason so many children in Africa have shaved heads is to prevent lice infestations. Missionaries in Africa have shared that tidbit with us.
   Hope the discomfort isn’t too great.
   Love,
   Patricia

2. Karen Tillman Says:
   September 20th, 2007 at 2:52 pm e

   Vrooom Vroooom Lice lice go away, and don’t come back here to stay!!! GRIN Glad the visit went well, and don’t blame you a bit on the head shaving thing for sure.
   Take care and give Katy my love
   Karen Tillman

3. Jennifer Blugerman Says:
   September 20th, 2007 at 4:44 pm e

   Lice aren’t nice
   But then I suppose,
   There are worse things
   Around right under our nose…

   A bee in your bonnet
   A mouse in your pants
   A snake in your bathtub
   A bed full of ants!

   A squid in your lunchbox
   A slug in your shoe!
   A rat in your pj’s
   A frog-filled canoe!

   So nits, go away!
   But I count my joys
   that never have I found
   An iguana with my toys!!

   -Jennifer

4. Patricia Hagsten Says:
   September 20th, 2007 at 5:33 pm e

   Lice may not be nice …. but remember how thankful Corrie Ten Boom was for them in the concentration camp!! Patricia

So Far

Katy and I have done about twenty-five loads of laundry in the past four days. We had some unexpected visitors arrive with Qavah; lice. Last Friday night just before sending Qavah home with Julie, I took Qavah’s hair out of the little bun that had been in it since the day we got her, and lurking in that nice cozy place were lice. Julie stopped at Wal-mart and bought a product to help with that but it didn’t phase those lice. The next day there were even more lice than before the treatment. I had worked several hours on the nits but the day after that, there were even more. Then a quick inspection of Katy’s head and mine revealed the unthinkable! After our treatment, Katy and I have been lice-free for two days now. I have been washing, boiling, ironing, cleaning, vacuuming, and trying all kinds of online recipes for ridding Qavah of this problem. A few days ago we cut Qavah’s hair shorter, but finally Paul said, “Qavah, I think it is time to get rid of your hair!” She is adorable with or without hair. And now she is definitely “without” hair. We see her doctor tomorrow and will discuss the infestation. We have never experienced lice before, and I hope this will be the last of them.

In other news, Katy was able to join us for dinner tonight and her grandparents were here for a harp lesson and dinner. The Imuran is helping Katy make it to the next Remicade treatment. Although her pain level is high especially during and after a meal, her inflammation, reflux, hives, and electrolytes are much better controlled. We are so thankful for that. When Katy started experiencing the first signs of needing a treatment I thought, “This will be a long seven days!” But with pain medication and all the laundry keeping us busy, the time has gone quickly.

My title, “So Far,” means that ten years ago I would have really stressed out over the lice. I have come so far. It is a lot of work, but it isn’t life threatening. It is an inconvenience, but I’m eventually going to win. HPS has some miserable health issues associated with it, but because of it I have learned to look at everything else with less dread. I was talking to a builder recently with a very strong southern accent. I was telling him about the complication of trying to work on our air conditioning unit in the attic. He suggested a couple of ways to get into the attic to access the unit and suddenly said, “You ain’t gotta worry about that. It ain’t nothin’ but a thang.” As soon as he said it I liked it! While I am after the microscopic enemy in our home I’ve really been able to say, “It ain’t nothin’ but a thang.”

Comments:

1. Heather Kirkwood Says:
   September 18th, 2007 at 11:53 pm e

   Good luck with the battle against those little lice!!! I remember when I was very small I picked them up at school - I remember it because of all the horrible things my mom made me bathe in….HA! Katy, I was checking in because I was starting to worry that maybe something was up since I hadn’t seen you around online in a bit. I know several others struggle with this last week before the Remicade, but I’m glad the Imuran is helping…you go girl! I check in when I can - things are really, really hectic these days and I’m not able to do as much as usual. I have a feeling it will be that way for a few months.

2. Anne Poler Says:
   September 19th, 2007 at 8:21 am e

   I’m reminded of another famous case of lice which turned out to be a blessing: the little critters kept the Nazi officers out of the womens’ barracks where Corrie and Betsy Ten Boom were free to hold Bible studies with the other women. They learned to give thanks in all things–even lice! I know you’ll be glad when that situation is over, but I’m glad they’ve provided a bit of a distraction from Katy’s pain. Looking forward to hearing that the next Remicade treatment is providing relief. In the meantime, I’ll be praying for all of you.
   Love,
   Anne

3. Jes Says:
   September 19th, 2007 at 12:30 pm e

   Ahh LICE….I think everyone has a story….my sister got them when I was in college and I went home for the weekend and managed to pick the little suckers up….It was terrible to go back and have to deal with it at school…with all of my roommates knowing and judging…But I smile to think of ’so far’ because it’s so true…As a mom - I’ve been puked on, pooped on, bitten, and licked (probably all in the same day)…and that just is off the top of my head. The lice really don’t seem as bad anymore!

   Hang in there with the laundry - it’s no fun but you will win!
   We love ya’ll!
   Jes

4. Karen Tillman Says:
   September 19th, 2007 at 3:32 pm e

   Dawn,

   That is so true!!! It is just a thang indeed!!!! Oh man, LICE!!! YUCK!!! I remember when my daughter Holly got them. Being visually impaired and Tommy working 2 jobs, it took us FOREVER to get rid of them. We finally cut off all of Holly’s long hair, gave her a boy’s cut, and contacted the doc about something used to treat, and pardon the abrasiveness of this, used to treat crabs!!!! The pediatrician didn’t want todo it at first, but I explained that I was legally blind, and the whole saga, and he finally gave in, and boy was I glad. If you have any stuffed animals, you need to put those in airtight garbage bags, and either throw them away or leave them I think a couple of weeks. I personally threw everything that was a toy that couldn’t be washed away. And I am so sorry for you having todeal with this. But as they say, “And this to shall pass”
   Take care
   Karen Tillman

5. LInda Burk Says:
   September 19th, 2007 at 8:45 pm e

   HI..welcome to our world.. the second grade at my school has lice too…and it is in a vrey neighborhood..every year someone brings lice to school…and it spreads VERY fast……..I remember lice with my girls…and they had very long thick hair..yes we got rid of it…but what a mess…and soooo time consuming……….hopefully the worse is behind you…….what a fun story you will tell next year about Qava’s first September…………are you babysitting your grandaughter regularly now? Julianna is expecting a baby girl in Feb. The baby’s name is Cecilia Lynn,,(CeCe Lynn after Jackie Lynn). Maggie is busy planning the baby shower for early Nov. I love ths stories you tell . where is the photo page? Katy mentioned more photos on the photo page…we will have a warm weekend..so I, too, am between seasons with my clothes, Katie. I hope Monday is a great day for all.
   Love, Linda

6. LInda Burk Says:
   September 19th, 2007 at 8:45 pm e

   HI..welcome to our world.. the second grade at my school has lice too…and it is in a vrey neighborhood..every year someone brings lice to school…and it spreads VERY fast……..I remember lice with my girls…and they had very long thick hair..yes we got rid of it…but what a mess…and soooo time consuming……….hopefully the worse is behind you…….what a fun story you will tell next year about Qava’s first September…………are you babysitting your grandaughter regularly now? Julianna is expecting a baby girl in Feb. The baby’s name is Cecilia Lynn,,(CeCe Lynn after Jackie Lynn). Maggie is busy planning the baby shower for early Nov. I love ths stories you tell . where is the photo page? Katy mentioned more photos on the photo page…we will have a warm weekend..so I, too, am between seasons with my clothes, Katie. I hope Monday is a great day for all.
   Love, Linda

7. Sara Says:
   September 19th, 2007 at 8:45 pm e

   Sorry to hear about the lice. James had lice once. No one else got them though. I remember cleaning everything and putting all the toys in garbage bags after I sprayed them with the insecticide. I left them in for about two weeks. That did the trick. My mother had lice as a little girl. She got it from her cousin. Back then they got rid of lice by pouring kerosene on their heads. I don’t imagine you will try that one! We will be praying for all of this to be taken care of quickly. We also continue to lift Katy up to the Lord for strength and healing. We love you dearly.
   Sara

The week before Remicade

It comes around so fast. The week before Remicade is always so painful. As the Remicade wears off, Katy’s symptoms return with a fury. It is all she can do to hold on. Remicade works very well in her body for five weeks. Until the Remicade protocol is changed for Chrohn’s patients, it can not be given any closer together than six weeks. I guess it has to be studied and proven first. Katy called her doctor this morning to beg, but the answer was “no”. It is a hard situation to be in; to know relief is just a week a way but have to live through agony until then. The NIH is starting a new program to study the effects of certain medications on the bowel problems of HPS. The answers can’t come soon enough for people like Katy. I wish them well and hope for the sake of those yet to be born with this syndrome that their road to normalcy will be less bumpy than those who have gone before.

Katy and I have been keeping very busy during the week. Qavah is homeschooling and Annelise is now able to crawl into the center of all the activity. She is a social butterfly and likes to babble as though in conversation with us. Katy usually ends up with Qavah, and Annelise and I go to the kitchen for meal preparation. While all that takes place, Katy is supposed to be studying, reading, and preparing to write her final paper. I usually tell her that I can manage both girls so she can work but she’ll ask, “Why do you get to have all the fun?” And it is fun, and sometimes when life is hard it is better to have a little fun sprinkled in with all the tough stuff. That’s a good question, Katy! Why shouldn’t we have a little fun!

Comments:

1. Jennifer Blugerman Says:
   September 18th, 2007 at 9:53 am e

   An image to think on while you’re not feeling well, Katy…

   This morning, we headed out to the beach and the kids jumped right into the giant sand pit they dug yesterday. While they were busily employed, David and I set up our chairs and just stared at the sea. The waves were teeming with life — tiny fish, millions of them, were visible through the sun-caught crests of water. The water seemed effervescent — bubbing like a freshly poured soda! You could hear the little popping and hissing as the fish swirled back and forth at the top of the water. Then, God added to our delight by supplying a pod of dolphins, just 50 feet from shore. They too were enjoying the schools of fish, but for different reasons! haha! We watched them arch gracefully in the water, and once in a while you could see one riding a wave just under the water! And I thought only people body surfed! I looked over at David and said, “I think dolphins know they’re cool!”

   We are praying that Remicade day come quickly!! We miss you all!

   -Jennifer

2. Sandy Says:
   September 18th, 2007 at 10:40 am e

   We will pray you through this harder week, Katy, as you await the next Remicade Day.

   I think with two small girls in the house, I’d also rather have fun with them than stay at work all day too! At the beginning of my second year of teaching, I was swamped with work one weekend but snuck over to my cousin’s house to hold her then 13 week old little boy for a little while. I was pretty stressed when I got there, but just holding him while he slept and keeping time with his breath was enough to really ease the stress. He is now a very active two year old who still helps me keep things in perspective and adds so much joy to my life!

   Sandy

3. Trisha Ferris Says:
   September 18th, 2007 at 2:48 pm e

   Katy,
   I’m praying you feel well enough to swing with Qavah & Annalise.
   Trisha

4. Karen Tillman Says:
   September 18th, 2007 at 10:45 pm e

   Katy,
   I will pray that God will give you the strength to handle things til the next treatment. I do know how frustrating this can be, but on a somewhat different level. Question, there is a drug called Humira, it is basically the same as Remicade, but it is an injection that can be given evry 2 weeks and at home with no hospitalization. It is also made from human synthetic rather than the mouse synthetic that Remicade is made from. I don’t know if you guys have talked to anyone about this or not. I am currently looking into it, but probably will not be able to afford it. The cost for 2 injections a month in this area is approx. $1,689.95!!! I also don’t know much about side effects either, so if you are interested, I would highly suggest doing much research and as always follow the advice of a medical professional as I am just a patient asking a question, and looking for a few answers myself.
   Love and prayers
   Karen Tillman

Fixing our eyes toward the New Jerusalem

We all fell into our beds last night, faces toward the heavens, and prayed for the blessing of sleep. The Lord gave us twelve and a half hours of the best sleep we’ve had in days. I woke up on my back and started to cry! “Look at me Lord, I’m crying for joy over a good night of sleep!” I got up to check on Katy and her first words were, “I slept all night, Mom!” We had a hallelujah moment with our arms and faces raised toward heaven.

There are religions in the world that place prayer mats on the ground facing east or toward a holy shrine. They are very zealous people and stop several times a day to place their faces to the floor in prayer, following very strict rules. Beloved, we who embrace the living God are asked to freely give thanks in all things. We are asked to sing praises to our God and with thanksgiving in our hearts make our requests known. We are asked to fix our eyes on Him. We have the freedom to pray any way we want to and for anything we need without rules or regulations. Tonight, our faces are turned toward heaven, to the New Jerusalem where one day, we will walk the jeweled streets with the One who answered all our prayers. We’ll be reunited with beloved parents or grandparents who first taught us about God and taught us to pray. Imagine how precious those days of eternal rest will be for those who labor day after day with the struggles of this life.

In meeting the needs of our girls, we are trusting in the Lord to answer our request for more strength, and more determination. We get tired. We get cranky. We have to turn our faces to the heavens and ask for help. There is a silver lining to be found in crisis situations, it is that it reminds us how much we need God. It reminds us to pray and cry out for help to the only One who can answer. Crisis turns our eyes heavenward to the One Who promised to be an ever present help in times of trouble. He is sovereign, never sleeps or slumbers, and is always in control. It is now sundown. Sabbath day has begun. Enjoy your Sabbath Day with worship. Now is the time to worship the Holy One of Israel, who accepts our prayers anytime, and anywhere.

Lord God, as we pray for ourselves and those we love, do not let us be anxious about anything, but by prayer and supplication we will make our requests known. And let your peace, which transcends all understanding, guard our hearts in Christ Jesus. Amen -Philippians 4:6-7

Comments:

1. Jes Says:
   September 15th, 2007 at 9:03 pm e

   Thank you for the reminder that we can go to our Heavenly Father at ANY time for ANY reason! Sometimes I get to thinking that it’s only the big things and I miss the little oppertunitys to just stop and pray! This evening was really a tough one, with fussy little people doing things that they knew they shouldn’t be doing…and I relied on my own strength and wisdom - making the situation worse as we all butted heads. There was no peace because I was trying to “make” it happen on my own - not going to the true Peace Giver….

   I’m so glad that things have settled down a little and that Katy received good care from the nurses. I love that Paul Burton was able to be with her - what a great big brother!!!! Btw- the other night we were talking about taking Katy and Qavah home…and Noah asked me where Paber was…I was so confused…I had no clue who Paber was…then he said “You know mom, Paber that plays the fiddle at church”…I got a good laugh and a new nickname in my head for Paul Burton!

   Love ya’ll!
   Jes

2. Karen Tillman Says:
   September 15th, 2007 at 9:23 pm e

   Dear Dawn,
   What a touching and meaningful post. I am truly thankful many times over that when we can no longer rely on our own strength, that God can carry us through if we just let Him. Amen, to such beauriful words of wisdom about our Lord and Savior.
   Praying for you daily
   Karen Tillman

3. Bob, Amy, Emily, Meredith and Abby Says:
   September 16th, 2007 at 6:55 am e

   All I have to say this Sabbath morning is AMEN (because of the AWESOME GOD THAT WE SERVE)!! and PRAISE THE LORD (for your sleep)!!! :0)

   Love you all. We’ll be calling you soon.
   Amy and family

4. rosanne ayers Says:
   September 17th, 2007 at 9:07 pm e

   dearest friends….how I rejoice with the way God has yet done another beautiful thing in your midst. what a testimony of His grace. welcome to Qavah. What joy….what a blessing. My eyes are filled to the brim with tears …. rejoicing.
   i continue to love you and pray God’s blessing on Katy and now Qavah.
   thank you for being light and salt to this generation.
   Peace,
   Rosanne

More Answered Prayer

**Katy’s Musings has been updated**

This will be a brief update since we just got in from the hospital. We have Katy at home now and her afternoon lab work showed everything in beautiful balance! Her white cell count was 20 which is a little high, but everything else was perfect and she feels it! The infusion of iron started last night around midnight and Katy had Paul Burton there with her until five this morning. He got off his hospital shift at eleven o’clock and agreed to stay so Paul and I could go home for a few hours. He knows how to balance Katy’s electrolytes by observing her and because Katy was admitted as an outpatient we were able to use all of Katy’s medications and electrolytes from home. It made it so much easier than waiting for the pharmacy to send the necessary things to her room. Within a few hours after the iron started, Katy’s body settled down considerably. She has felt a huge difference in her pain level and energy level already. She was able to get herself dressed this morning.

We have carefully and thoughtfully decided to make a change in Katy’s care after this last adrenal crash. It is in Katy’s best interest to move to a larger GI practice where emergency care is more readily available. It was a hard decision because with HPS, starting over with a new doctor means a long educational process and a six inch high stack of medical records to be reviewed. Katy has wanted to see this change happen and we will do everything we can to support her in that decision.

Qavah had a fine time with Aunt Julie and Uncle Dan last night. We appreciate them more than we can say. Paul picked Qavah up from their house this morning and brought her back to the hospital to stay there with us. She saw Katy have to submit to everything she went through herself a couple of days ago. She now knows that she is not the only one in the family that has to endure regular medical procedures.

Our first blessing upon our return was reading the encouraging comments you left. Paul was reading, or trying to read them to us, but when we got to the verse that Jes left for us we were pretty choked up. God’s word is alive and active, more powerful than a two edged sword, and our souls know it full well. Those words hit their mark and penetrated deeply. We are planning to turn in early tonight, hoping both girls will have a deep peaceful night of sleep. “But if not…” we can do all things through Christ Who strengthens us.

Comments:

1. andrea Says:
   September 14th, 2007 at 4:32 pm e

   Praise the Lord for taking caree so of Katy!
   i never had any doubt that she would come through this with flying colors again:)
   Our God is so great and provides for us so much. Bless His Name!!!

   Dont think I am not up to date on your blog, I am just not commenting that much as I should, but you ALL are always in my prayers.

   He Aint Through With Me Yet, and neither with you guys!

   Love and Blessings
   Andrea

2. LInda Burk Says:
   September 14th, 2007 at 5:56 pm e

   Hi..welcome to Qava..glad Katy is doing better this evening. What a busy house you have. WE love hearing all your news. OUr news is Julianna and DeCArlo will have a baby girl on FEb. 9. They have named her Cecilia Lynn (CeCe Lynn) after Jackie Lynn. CeCe is now 8 oz and 8 inches long. We have the 3 D sonogram of CeCe sucking her thumb..modern technology is amazing..God is blessing both our families .. enjoy the cool weather as the seasons prepare to change……..life is all about change..love, LInda

3. Sandy Says:
   September 14th, 2007 at 6:55 pm e

   So glad you’re all back home. Praise God from whom all blessings flow! I hope you all have a peaceful night.

4. Jennifer Blugerman Says:
   September 15th, 2007 at 8:05 am e

   Hooray, and Praise God!! We are so thankful that the iron is doing the trick — not surprising considering the prescribing Physician

   Today we are surprising the kids with a trip to Carowinds amusement park with their cousins. They got some free tickets when we did the Juvennile Diabetes Walkathon last Spring, and today is overcast and in the 80’s — perfect weather for being outside. Tomorrow, Lord willing, we leave for the beach and may or may not have internet access there. Please call David’s cell phone or our home phone and leave a message if ANYTHING comes up! We hate being unattached from the blog!!

   We love you all!!

   -Jennifer

5. Doris Harriff Says:
   September 15th, 2007 at 10:48 am e

   Praise God! He is truly an awesome and powerful God. I have a praise, too, and I want to thank everyone who prayed for my great-granddaughter Keely. She is doing better, although she has a long way to go.
   Aunt Doris