Dad, Candice and I flew to Bethesda, MD on August 8th to the National Institutes of Health.  We weren't able to participate in the Natural History study for seven years because of Candice going through cancer.  So the last time we were there was back in September of 2003.  The NIH had a lot of remodeling done since we were last there and has changed some.  We stayed at the Bethesda Court Hotel which is a few minutes away from the NIH.  In previous years we would stay inpatient, so it was nice to be able to go back and forth.  We had lab work, I had a chest Ct scan done, Candice didn't need to do one because she had a Ct done recently at the Mayo clinic.  Candice had a Dermatology appt. and EKG as well.  We both had various lung Pulmonary Function tests done which our results were pretty consistent.   We also did a six minute walk and there was no sign of desaturation and our oxygen stayed at 100%. Our chest Ct scan showed no sign of Pulmonary Fibrosis.  Praise God!!  I think all the exercising and singing really do help strengthen the lungs and are keeping us stable.  Kevin, who is the CRNP for adult HPS patients, told us that we are doing very well especially for our age.  On Wednesday, Candice started not feeling well.  Her heart rate was elevated, we think caused from the bronchodialater Albuterol treatment which she is allergic to.  Neither one of us can take it as it causes hives, increased heart rate and anxiety.  We had to switch our rescue inhaler and nebulizer to Xopenex and it seems to be working much better.  Candice was also dealing with fatigue and stomach pain as well.  Kathryn, who also has HPS, her little sister Qavah, and their mother Dawn drove up to MD to visit.  We also had plans to have dinner at a restaurant near the hotel that night with the DC crew Gina, Julie, Ryan and Sara.  Ryan and Gina have HPS as well.  Candice was unable to join us for dinner that night.  Kevin gave her strict instruction to stay in the hotel room and rest.  So they all came back to the hotel to see Candice and visit for a few minutes.  We had a wonderful time at dinner, but it really wasn't the same without her being present.  Thursday we were supposed to fly back home in the evening, but that didn't happen.  Candice woke up really low in energy, and her heart rate was still elevated.  She felt completely worn out and we had to have our flight extended for a couple of days.  We went back to the NIH, and Kevin ordered more blood work and another EKG. The EKG results were good.  They didn't show any signs of an elevated heart rate.  It was very frustrating for her, feeling so exhausted and not really having a reason to feel that way.  She still had a lot of stomach pain that day.  Kevin also checked the C Reactive Protein(CRP) level in the blood.  This did show signs of inflammation in her body.  It was decided at the end of the day for her to go back on Flagyl.  We knew we needed something to help get her through till we could get home.  We've always said if you are going to be sick, the National Institutes of Health is the place to be.  We felt we were in good hands with Kevin.  We thank him for his hard work and care for us.  If you could, please keep Candice in prayer.  She is still having a bit of a tough time with her stomach.  After about three weeks of this flare up, things are starting to get a little better.  It's part of the struggles of living with a rare syndrome.  You really don't know from day to day, how things are going to be.  

Mom had her hands full with Jody while we were gone.  He had a cast put on two weeks and this past Monday he had a follow up appt with the surgeon and they removed the cast and put him in a boot.  He will not be able to put any weight on his foot for another three to four weeks.  Our poor mom didn't want to hear that.  She has had a lot on her plate the past five weeks.  He still has a long road ahead of him.  Please continue to keep him in your prayers.

I started voice therapy and have already had three sessions.  I will be doing six sessions and will continue the exercises on my own for a month or so.  Jean, the speech pathologist is having me work on four different types of vocal exercises.  One is on an E vowel, a slide exercise and another exercise to see how long I can hold notes softly on the word OLL.  Singing these exercises as softly as possible without sounding too airy/breathy is the best way to heal a vocal cord.  She also gave me some stretches to help with neck tension.  I am also practicing saying M one and two syllable words, as well as other one syllable words.  Yesterday she gave me a list of sentences to practice.   All of these exercises I do twice a day.  I may still have to have an injection just because I use my voice for performing.  Please do keep me in your prayers.   I have decided to take a break from voice lessons for now and start back up in January.  We are still continuing to do our ministry.  We have a booking next Saturday Sept. 4th at Indo-Pak which is a born again Eastern Indian church.  We enjoyed singing there a few years ago and are excited they asked us to come back and sing again.  We are also looking forward to singing with Sue next Sunday at our church.

I went for a follow up ENT appt. to see Dr. Wiggenhorn on Monday for the results of the videostroboscopy.  I will be doing six sessions of voice therapy beginning August 4th.  My left vocal cord is normal and the right one is bowed which is causing a small gap.  It also showed symptoms of reflux (which I'm taking medication for) as well as muscle weakness.  Dr. Wiggenhorn said if the voice therapy doesn't work, I will have to have an injection into the right vocal cord.   He also thought it could be caused by a nerve thing and so he may have me go for a Ct scan of my neck.  I am praying the therapy will help improve my overall voice quality.  Please keep me in your prayers.  We have a booking next Tuesday at La Loma Retirement center in Goodyear.  We did a student voice recital with our voice teacher at LaLoma this past April.  We're singing for the care center at 10:30am and the retirement center at 2:00pm.  We hope to be a blessing to the residents as we minister to them in song.  

We made two trips up to Cottonwood this summer to visit family.  Our dad helped Rhonda's husband David with some home projects.  It was great to see Austin, Leah and Hunter.  They are growing up so quickly.  Austin and Leah turned two this past spring and Hunter will be one in October.  Danielle and Mike are expecting a little girl, Marissa in September.  It was great to get out of town and spend some time with our family.  Mom, Rhonda, Danielle, Candice and I had a girls day out shopping in Prescott which was fun.  We treated ourselves to the Olive Garden for lunch.  Can't get any better than that!!  Italian is our favorite!!

Our brother Jody has been having foot pain for several months now.  He was admitted into Gilbert Mercy Hospital on Monday and after a rough and long week, he will be having surgery this afternoon.  The surgery is going to be quite invasive and we are praying there will be no complications.  Like the two of us, he also has so many underline issues.  Please keep him in your prayers for a successful surgery and recovery.  His surgeon Dr. Hanson, is certain that after the surgery he should have a better quality of life.  Our mom is going to have her hands full the next couple of months caring for him.  I know God has his hands around Jody and HE will carry him through this difficult time.  Thanks for your prayers!!

After the benefit concert we had two vocal recitals with our voice teacher.  The first, was a small recital at La Loma Retirement Center.   It was nice practice for us in helping to prepare us for the bigger recital. The residents seemed to enjoy the afternoon of music. The second recital was held at St. Peter's Episcopal Church.  There were seven of us who performed and we were grateful to have Paula Dahl accompany us.  She's a wonderful pianist and it was really special for Candice and I to have her play at one of our recitals.  We both sang three solos.  I sang "Let the Bright Seraphim" by Handel, a Spanish piece called Con Amores La Mi Madre by Orbradors and "The Letter Aria" from Ballad of Baby Doe.  Candice sang "Spring" from the Six Elizabethan Songs by Dominick Argento.  She sang a beautiful Spanish piece called "Del Cabello Mas Sutil" by Orbradors.  and "Widmung" by Shumann.  We also sang "The Prayer" for the closing.  It truly was a fun recital! We were happy to be a part of it.  Singing solos is not really our forte, but it really is a pleasure to work with Karen.  She has challenged us, and helped us to grow both vocally and musically.  The past five years have been so enjoyable for us.  We look forward to working with her again this next year. 

 We also had the opportunity to sing last Sunday afternoon at Hillside Baptist for their youth fundraiser.  It was an Ed Sullivan variety show /bake off. They were auctioning off many cakes, cookies, brownies etc. All that yummy stuff.   Many people from Hillside sang.  I think the most interesting act was the whistling top hats. They were too funny.  Candice and I sang last.  We did three songs "The River Is Here, Let the River Flow," "Jerusalem," and finished with "When You Believe."  We gave our testimony and received a standing ovation from the crowd.  It was truly humbling and a real blessing.  We had a wonderful time! Now, we are looking forward to seeing what's in store for us this summer.  Enjoy the pics from the concert!!