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Hello Everyone,

Lots has happened since we sent our email to you asking that you pray for Christiana. First we want to thank you from the bottom of our hearts for your obedience to the Lord and lifting her up in prayer. She has felt so loved. The comfort that we have received from you all is overwhelming. We love you and pray that God will bless you abundantly.

Christiana is in very good spirits and is on the way to healing. As we mentioned in our previous email, she has been suffering from severe muscle weakness. After seeing a pediatric rheumatologist and taking more specialized blood work, it has been determined that she has a non-contagious, auto-immune disease called Juvenile Dermatomyositis (JDMS). The presence of muscle enzymes (CPK) in her blood is currently at over 4,000. It should be at around 100! There is no known cause and no cure but it is controlled with a lengthy prescription of steroids followed by non-steroid drugs. If you would like to read more about this disease, go to www.arthritis.org/conditions/DiseaseCenter/jdms.asp.

Christiana started taking the steroids on Monday and has already seen her face rash and puffy eyes (other minor symptoms she had) go away! Praise God! The doctor said she should be feeling her muscles regain some strength within 2-3 weeks. At that time we will begin physical and occupational therapy. She will be on high levels of steroids for 2 months. She will then be switched to a moderate then a low dose within the next 2-3 years. We look forward to the day when she will be able to shoot baskets again. And she will!

Please continue to pray with us. Despite what the doctors say, we know that God heals and we are contending for miraculous healing of JDMS and no side affects from the steroids.

Love,

Dwight and Maria

Hello Everyone,

First of all we wanted to thank all of you for your continued prayers for Christiana. God is good and we know that He has great plans for her. She will be healed! She's prepared to share her testimony and be a witness to other children when God says that it is time.

The support of our blood family, church family and friends has been overwhelming and has been a tremendous blessing to us. Thanks for caring. Thanks for taking the time to pray, visit and prepare meals for us. Thanks for the rides "to and from" for our girls and thanks for the words of encouragement.

Unfortunately, we are not "out of the woods" yet. We will be patient for God's timing. Christiana has had multiple complications due to her Juvenile Dermatomyositis. Briefly, JDMS causes inflamation of blood vessels which is causing red blood cell and platelet destruction since the passageway is narrowed. Destruction of blood cells cause increased hemoglobin in the blood stream which the kidneys is having a difficult time with. In addition, the remedy being used for the inflammation, steroids, is now causing high blood pressure and diabetes. It's complicated but the plan is to try and reduce the steroids this week and to continue with red blood cell and platelette transfusions as needed so that those numbers can remain in safe levels. In addition, she has had one dialysis treatment and they are considering a few more since her kidneys are at about 50% functioning level. In addition, her plasma is being replaced daily to try and break up any clotting which may be occuring in her vessels. Reduced clotting will broaden the passageway in the vessels.

Bottom line is that that doctors expect her to be at Stanford for a few weeks still. We all know that God can shorten that anytime He wants. Please continue to pray for healing. Christiana is being so strong throughout this time. Please pray for increased strength and faith for all of us.

For those of you who didn't know, Serena was admitted at Good Sam Hospital last week for appendicitis. It has been difficult having one child in the hospital but to have another was indescribable; especially since Christiana was in ICU that night. Once again, you all lifted us up and helped us through this. Serena is fine now and back in school.

We love you all and remember, God will never give us more than we can handle. We must remain full of faith and know that God is capable of all.

Love,

Dwight and Maria Powery

Hello Everyone,

We just wanted to give you all an update on Christiana. Thanks for your continued prayers and concern. Christiana is still at the hospital and unfortunately we still have no idea of when we will be coming home. We're close to 6 weeks at the hospital but we are trying to make the best of it.

We have decorated her room nicely with all your cards, flowers, balloons, a signed soccer ball from her old teammates, and stuffed animals. Spongebob is very well represented and the nurses talked about sending a picture to Nickelodeon so that she can become a spokesperson . Thanks for brightening up her room. Rumor has it that her room is the most cheerful one in the whole hospital (honestly)!

It is very difficult explaining exactly how she's progressing because it is a day by day thing. Some days are good and some days not as good. Generally we believe she is improving however, we are in a "wait and see" mode.

First of all, her kidneys are somewhere between 32-36% functional. Praise God! It is up from 10%. However, that is with the help of dialysis. She is receiving dialysis 3-4 times/week. The plan is to continue with dialysis and, over time, decrease the number of times/week until it's down to zero. This could take months but she can do dialysis as an outpatient when she is ready. In addition, she is taking two other strong medications to help eliminate the destructive antibodies in her kidneys. Her first dose of both medications was given two weeks ago and the second is coming up this Sunday. These medicines take weeks to see the effects but the doctors have indicated that preliminary blood work shows that her body is responding well.

Second, her red blood cells and platelets are still not where they should be. There are days when they go up and days when they come down. No significant dips however like she had when she was hospitalized. Praise God again! The treatment for the blood had to be temporarily stopped in order to give priority to the kidneys. If both were done at the same time, one would undo the other. This week they are focusing on the blood treatment and next week they will resume the kidney treatment.

Third, Christiana is very weak. Her JDMS (Dermatomyositis) as well as all the bed rest she has had to have has taken a toll on her. She has daily physical therapy and is using a walker to assist in her stability. We regularly take her on wheelchair rides to get her out of her room.

The plan is to continue to wait for improvements in her blood, kidneys and physical ability. Once she has reached a level that is safe, the doctors will then begin to talk about the possibilities of coming home. Once at home, her return to school will be based on her physical strength. She may be in a wheelchair for a while and may need to go part time. In the mean time, she will be doing school work from home.

Remember, this is all temporary! God has a plan for her and the doctors still expect her to able to play sports again with the assistance of maintenance medication. We have months of work ahead of us but our faith remains strong.

Below is a picture of Christiana. Enjoy and please continue to keep her in your prayers.

Love,

Hello Everyone,

"And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast."  1Peter 5:10

We know that some of you, along with Christiana, are also ill. As you pray for Christiana, we also pray for you and that God will heal you. Believe the Scripture above. God's Word and your support has been our strength through this trial and we believe that she and you will be restored.

Thanks for continuing to pray for her. We know it's been a long time but please do not cease. She still needs your prayers. When you pray for Christiana's healing, pray specifically for healing of the heart, kidneys, blood and muscles. Also pray that she will remain in good spirits and hopeful. With so much still being worked on, there is still no discharge date in sight.

Some good things have happened since our last message. First, they are starting to decrease her blood pressure medication. The daily draining of fluids with dialysis that are not being drained independently by her kidneys has made her blood pressure go down. Also, she is doing a lot more physical therapy and her muscles are slowly getting stronger. We're talking baby steps but it's progress nonetheless. They have gradually dropped her steroid medication since she was initially hospitalized. She is now down to 90mg/day from 160mg/day. Third, a recent ultrasound of her kidneys showed that they have not gotten any worse in the last 3 weeks. The blood flow through the kidneys has not decreased or increased.

Because her kidneys are not functioning well (<10% now), Christiana is retaining lots of fluid. This fluid is now surrounding her heart. Thank God that the heart is still 100% functional. She has been getting aggressive dialysis treatments so that this extra fluid can be drained as much as possible. She's basically being drained like a little raisin so that the heart fluid can seep into dry vessels. She will be getting weekly ecco-cardiograms to see how this progresses. Pray for this fluid to be gone.

The fluid retention, as mentioned before, is due to the kidneys not working properly. She doesn't urinate much so that extra fluid is remaining in her body. Please pray that these kidneys would kick in soon. Pray that there is more blood flow through the kidneys.

Christiana did have a relapse with the red blood cell breakdown. Her platelet count dropped from the 80's to the 30's in the last two weeks. It seems like these last few days have shown some progress. Although the red blood cells are still decreasing, her platelets are in the 50's today. Praise God! Please pray for continued healing in her blood flow.

Physical therapy has helped her muscles but we still have a long way to go. We still rely on the walker and wheelchair. Please pray for muscle rehab and improved strength.

Lastly, they will be installing a feeding tube today or tomorrow to help with her nutritional weight gain. Christiana is eating a lot but her metabolic rate is too fast since she's so ill. She can't keep up so they will be supplementing her nutrition to ensure that she gets at least 2500 calories/day.

We know this is lots of detail but being specific in prayer is so important. Again, thanks so much for continuing to pray for and help our family during this very difficult time. May the Lord bless you all abundantly.

Love,

The Powerys

Hello Everyone,

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

We're asking for your prayers tomorrow (Wednesday) and to consider fasting at least part of the day. Praise the Lord that the plan is to remove Christiana from the continuous (24hrs/day) dialysis machine tomorrow because the doctor's believe that she has responded well. Being on the continuous dialysis machine has allowed her kidneys to take a break for 2 weeks.  Her blood pressure is better controlled and her overall numbers in her blood work look good. She will be removed from the machine and if she remains stable, she will then be transferred out of ICU. At that point, they will continue daily dialysis (3 hours/day) and wait for her kidneys to bounce back. Basically, she needs to urinate. Pray that she will urinate.

We're also thanking God that she has had no seizures in over a week, her platelets are slightly higher and that her spirits are pretty good. There's lots of physical and occupational therapy to do, however, since she is not able to walk at this time.

Be faithful in your prayer. God is hearing you.

Love,

Dwight and Maria

" Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations. " Psalms 100:4-5

Hello Everyone,

  Lots has happened since we last communicated with you. Sorry it's taken us so long but it's been difficult finding the time to write. First of all, we trust that you all had a great Thanksgiving and that God blessed you abundantly. He surely blessed us. We have attached a picture of our family on Thanksgiving day. We ordered the full meal from Marie Calendars (it was yummy) and sat around Christiana's bed and made her our centerpiece. It's not about where you are but who you're with. It will truly be a Thanksgiving we will never forget. God has given us a different perspective on life since Christiana's hospitalization and we are so thankful that the 5 of us had another year to spend it together.

  We want to continue to thank you for your support. Your prayers, meals, cards, visits and help around our home has been incredibly helpful. We remember each and every act of kindness and servant hood. Although it is difficult for us to thank each one of you individually, please know that we remember you. We will also be contacting some of you at a later date for some of your delicious recipes!

  As a friend of a friend noted, Christiana Powery has Christ's Power in her name. She can do all things through Christ who gives her strength. We continue to pray for healing. Good things have happened since we last communicated yet we still have a long road ahead of us. She has been out of ICU for about 2 weeks now and is back with her absolute favorite nurses. She is very stable and the doctors are starting to talk about discharge goals.

  First of all, the fluid around her heart has decreased. It's not gone yet but we thank God that it's headed in the right direction. Second, they have decided to test doing plasma exchanges every other day rather than every day. Her platelet count is still between the 50k - 80k range (minimum should be 150k) and she still gets periodic red blood cell transfusions but the doctors are wanting to see if her body can respond positively to less frequent plasma exchanges. If we can get down to 3 times/week, we can go home. Third, although she is still needing daily dialysis, she has urinated  3 times since we left ICU. The last two were two days apart. Although it wasn't a large quantity, we are thankful for every drop. The encouraging news, however, is that the doctors have decided to place her on a different form of dialysis called Peritoneal Dialysis (PD) which can be done at home! Christiana just had surgery today to get a new catheter put in her stomach where the dialysis system would attach to. She is currently recovering. The plan is to start her on this new dialysis next week and slowly take her off the current dialysis system. The next few weeks will be key in seeing whether PD will work for her and whether she can go home. She will be dialized overnight every night and have her days will be free for schoolwork, therapy and her other medical needs. Fourth, she has not had any seizures in about 3 weeks now. She is currently o n anti-seizure medication and they are actually considering taking her off it. Lastly, Christiana is extremely weak and her muscles have atrophied. She cannot walk now and in order to be safe, she must reach the goal of being able to walk with the assistance of only one person before she is discharged. As you see, there has been much progress but there is still lots to do.

  Although we are still weeks before being discharged, the fact that the doctors are talking about discharge goals is a praise. It seems like (and we pray) that she is "out of the woods" and that she will be home soon. Please keep praying and know that she feels so blessed to have friends and family like you.

Much Love,

The Powery's