Angels In Voice

Candice and I started off the month of August turning the big 30!!!  We are officially old!!  HAHA!!  I never imagined being this age as I think back on the years.  How time sure flies.  We did have a nice birthday.  We had the opportunity to sing a duet "You Were There" which was quite special.  It was the third time that our birthday was on a Sunday that we were scheduled to sing.  Our friends Rick and Sue Jordan took us out to Macayos for lunch to celebrate.  Of coarse we were serenaded by the waiters and waitresses, which was so much fun.  They brought us each a sopapilla with a candle next to it.  I've always loved sopapillas, it brought back memories of when we would eat them as kids.  We also had a great visit with our dear friends Andy and Joanne.  We received some wonderful gifts from our parents as well as from friends.  Our day was truly blessed.

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.

Jody came home from the hospital on Wednesday afternoon. The Cardiologist wouldn't release him until his INR was at 2.  He is doing well, but is still having some pain.  He has a long road ahead of him.  Please pray for our mom as she cares for him.  It's a big job to do and we pray God will give her the strength to do it.

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 are having an enjoyable and quiet summer so far.   After a very busy year of singing, we decided to take July and August off from lessons and rest our voices.  I made an appt. to see a new ENT in May because I was feeling vocally fatigued and having hoarseness.  I've struggled with acid reflux for almost ten years now and it's always been a constant battle. I thought it would be best to get a second opinion.  I found an ENT located in the Goodyear area that I really liked a lot.  He was an excellent doctor and really seemed concerned about my voice after examining my cords.  He told me my cords have a gap and are bowed (which I knew because I had seen an ENT before) I also have glottic insufficiency and muscle weakness.  I believe that some of it is caused from reflux.  I went for a videostroboscopy three weeks ago and have a follow up with the ENT on Monday to get the results.  It really has been frustrating, but I'm praying that with some voice therapy and relaxation exercises, I will be able to get the reflux under control. 

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!!

I had my 6th month follow up at the Mayo clinic last Thursday May 13th.  After having fasting labs, a CT scan of my lungs and an MRI of my abdomen.  I received the WONDERFUL news from Dr. Mulligan.  He was happy to tell me that all my tests turned out great! There are no signs of any recurrences!! Praise the Lord!! I am well on my way to being four years cancer free this coming November.  Dr. Mulligan also mentioned that he feels I could start following up at Mayo once a year.  I couldn't believe that!! It's truly through the Grace of our Lord and Savior that I have come this far.  I spent a greater part of today organizing all my radiology reports from 2004 til now.  As hard as it was for my family and I to experience the hard times.  We always felt the presence of the Lord giving us the strength we needed to get through day after day.  Lord, thank you for the AWESOME news you have given to us!! Please continue to give us the strength to serve you with our voices.  We love you!! Psalm 28:7

The LORD is my strength and my shield;  my heart trusts in him, and I am helped.  My heart leaps for joy and I will give thanks to him in song!

Our summer is off to a wonderful start, except it's hot, hot, hot!!  It is hard to believe we're already in the middle of July.  We're both doing well, still fighting severe allergies which can be quite miserable.  Candice had to go on Prednisone a couple of weeks ago for a few days as her allergies started affecting her asthma.  We had an appointment with our Pulmonologist last Tuesday and she was telling us many of her patients are struggling with them right now.  We had our Pulmonary Function tests done and I'm happy to say that they are staying very consistent.  Mine were at 69-70% and Candice's are 65%.  We try to be dedicated to exercising four times a week and I think that along with the singing really does help.  Candice had her four month follow up at Mayo Clinic last Wednesday and received a wonderful report.  There were no new tumors!!  We had a good feeling that she would be clear as her weight is staying consistent and that is always a good sign.  Dr. Mulligan was ecstatic, he is just amazed at how well she is doing.  Her next follow up will be sometime in November and if she is still clear then she will be able to go six months between the next follow up.  It will be three years this November that she will be cancer free.  We are so happy and we thank God for working a miracle in her life.

This past weekend our family traveled up north to Cottonwood to visit family.  We really wanted to get out of the heat for a few days.  Our parents helped Rhonda and her husband David with some home projects.  Our brother Jody worked in the yard pulling weeds.  Candice and I stayed with our niece Danielle and our great nephew Austin.  Austin just turned one in April and he is so much fun to watch.  It was really great for us to spend some time with Danielle, and we really had a wonderful time.  The weekend flew by way too quickly.  Before heading back home we drove to Sedona to Tlaquepaque to shop.  It's a beautiful place. There were a lot of art museums, jewelry and Indian shops.  There were a couple of stores that had objects made of glass.  Our grandparents lived in Sedona for several years and we visited there quite often when we were younger.  Since our grandparents are no longer alive we haven't seen Sedona for almost ten years.  We drove by our grandparents trailer and it's amazing to see how different it was.  Seeing it brought back so many memories of the times we traveled up there for Thanksgiving, Christmas, and mini vacations.  It's hard to believe it was many years ago.  We would play the game hide and go seek, and frisbee, with our siblings.  We would also take long walks and our brothers loved playing in the ravines.  It was so much fun! 

When we arrived back home on Monday afternoon it was 116 degrees and miserable.  It was nice to escape the heat for a few days.  

This week Candice and I have started working on a home recording project.  We're recording a few of the songs we sang at the HPS benefit concert along with some songs in our repertoire that have not yet been recorded.  It's a fun process, but quite time consuming. 

We are scheduled to sing a couple of songs at our church tomorrow.  We're singing "The Prayer" with our choir director Paul and Candice and I are singing "I Bowed On My Knees and Cried Holy."  It is one of our favorite songs and one that has been requested by many people at our church.   We are looking forward to the Sunday services.  Hope you all have a wonderful Lord's day.

Psalm 100 NIV

¹ Shout for joy to the LORD, all the earth.

 ² Worship the LORD with gladness;
       come before him with joyful songs.

 ³ Know that the LORD is God.
       It is he who made us, and we are his ^[a] ;
       we are his people, the sheep of his pasture.

 ⁴ Enter his gates with thanksgiving
       and his courts with praise;
       give thanks to him and praise his name.

 ⁵ For the LORD is good and his love endures forever;
       his faithfulness continues through all generations.