A Disappointing Visit with the Neurologist

Clara had her three month visit with Dr.Berenson, her neurologist, today. Each time we go, it is usually the same. He checks her over, discusses our next step, and we schedule our next three month appointment. Each visit we are reassured because she has not taken any steps backwards and seems to improve every time. I expected no different today. She was as happy as she always is to see him....I think she has a crush on him. :-) But when he started checking her over, his face totally changed. He said her reflexes were very abnormal....too big and too fast. (He used a big word for that, but I can't remember it). When I asked him what that meant, he said we were dealing with some sort of spinal dysfunction now. He asked if we had taken her for an MRI recently (which we have...6 months ago), and got really serious for a few minutes. All he could say was that we just need to wait on the results of her biopsy before we speculate on anything. I asked him if he thought this meant her disease is progressive, and he said, "not necessarily". He said that a year ago, he was not convinced we were dealing with a muscle disease, and now he is convinced because she is weak. He still thinks it will be a mild case, but beyond that, he can't say much more until we know for sure. He does feel confident we will get a diagnosis, so now we are just left waiting.

We are so thankful for the doctors God has given us. She is truly in some of the best hands in the country. We are so thankful for the bright and determined personality God has given her. You can't help but smile when she's around. Please pray with us, thanking God first for His many blessings (...giving thanks in all things..), and asking that
-she would not have any more pain
-we would get a diagnosis soon.
-that whatever disease she has would not be progressive and that treatment would be available.

Thank you for your concern and your prayers!

Much Love,
Jeannie

Break My Plans

Jeff has always teased me about being such a "planner". I LUUUVVV to plan. I plan everything. There is always something going on in my head. I plan what to get the girls for Christmas and birthdays 7-8 months ahead of time. If I am throwing a shower, I usually know the menu and theme 2 weeks BEFORE I even ask the person if they would like for me to do that. When we invite someone over for dinner, I am automatically planning the menu, what dishes we will use, where everyone will sit.... I plan grocery shopping trips. I plan to run errands. I plan how I am going to fix the girls' hair for upcoming special occasions....you get the picture. As much I love to plan, life doesn't always fall into a plan.

About two weeks ago,I attended a conference for Children's Choir Leadership. Usually I really love these conferences and look forward to them. However, upon arriving at this one, I must confess, I really did not want to be there. Life was weighing so heavy on me, I just wanted to go home and crawl under my covers. Clara's surgery was quickly approaching and I was still not sure how we were going to come up with the enormous amount of money they wanted up-front. I had some friends going through some hard times, and while I would never have NOT been there for them, it had really taken a toll on me physically, emotionally, and spiritually. The situation with our house had become so frustrating I was beginning to doubt it all. I never planned to have a daughter with a muscle disorder. I never planned for my friends to go through such a hard time, and I certainly never planned for it to take this long for us to get to Michigan. I was struggling with God. Why would He call us to this ministry we love so very much and are so passionate about, provide the means to go, and then keep us here for this long? Why did the market have to crash just as we were planning to sell? Why didn't He lay it on our hearts to sell in the beginning of our journey like He had for other people?

On the first evening of our conference, there was a worship service. I must confess, I really thought about skipping out and just going to the hotel. I just didn't feel like dealing with it. However, God, in His infinite wisdom, made sure I had already made arrangements to ride to the hotel with a friend and she was going to the service, so I was stuck. As I walked into the service, I slid into a very back pew, and what followed was amazing. The conference was for all aspects of music ministry and the worship service was a sampling of all of that. Camp Kirkland was there with an orchestra; there was a big choir; an artist painted a beautiful depiction of the Crucifixion of Christ as the music played; we sang hymns; we sang praise and worship music; there was drama, and on and on it went. But the most remarkable thing was a group that came to sing. I had never heard of them, but I love to hear a group of men singing a capella. They were called This Hope. I was already caught up in their music when they began to tell an amazing story. The story was about a man named Nicolae Moldoveanu they met in Romania on a recent mission trip. He was a hymn writer during the 1950's when communism was at an all time high in his country. The government told him that if he didn't stop writing hymns, they would put him in prison. Well, he didn't, and they did, and even while in prison, he wrote over 360 hymns! :-) Isn't God great? At the time of their meeting, he had volumes upon volumes of hymns on his shelves that are still being sung there to this day. He never planned for the government to interfere with his calling to write for the Lord, and he surely didn't plan to leave his wife and baby son to go to prison. But God was so faithful to him. He protected him and brought him back home safely. He even made sure he was able to continue to fulfill his calling while in the prison, in the worst of circumstances. This just really spoke to me. They wrote a song about him called "Break My Plans". While they sang, God reminded me of Jeremiah 29:11. "For I know the plans I have for you", says the Lord. A plan to prosper you and not to harm you and to give you a hope for the future. He didn't promise to let us in on His plan, but I take so much comfort in knowing that HE knows where I am going and He will be with me. That is one plan I do not need to make. Quite the opposite...I need to get out of His way!!! And so, right now, we are waiting. We are waiting on a diagnosis for our sweet Clara, but we know that whatever that diagnosis may be, God already knows and has her in His loving arms. We still know He has our perfect buyer. Who knows, maybe He has us here to raise more support for Clara's care, maybe He has other ministry for us here.....it doesn't matter. He has us here for a reason, and HE knows what it is, so I don't have to. Thank you, Lord!

I have posted the video here for you to enjoy, if you wish. I pray it speaks to you the way it did to me.

My prayer.
Break my plans.
Shape my heart.
Take my will to where You are.

Build my mind through Your Word,
Till all that I am lives to love you, Lord.

Many Blessings!
Jeannie

Clara's Procedure

Hi Everyone!

I am sorry I am just now updating our blog after Clara's procedure on Wednesday...it has been nuts since we have been home!

On Tuesday we went for her Resting Metabolic Rate test first. She was a champ! She had to sit inside a big, plastic bubble and breathe for 20 minutes without talking or moving around. They said that most of the time, they are not able to get this test accomplished with children her age. She did it, though! Once we explained to her what was happening, she did great.

Next, we went to the neurogeneticist. We had heard really great things about him, and they were true! He is one of two of his kind in the country..yes, that's right...the country! He came in and already knew Clara. He told us everything that has happened to her as of yet, and things we had likely experienced based on what was in her chart. He had spent some time studying her, for sure! He took a lot of time with us answering questions (we had a two hour appointment), and then was off to his lab to get things ready. On a funny side note, he did not look the way we expected. He looked like one of those guys in the comtemporary music lab at UGA. He had wild, long blond hair, a country-western shirt made from a 70's print, brown jeans, and boots. Pretty teeth, though!

On Wednesday, we had to be at the Pediatric Surgery Center by 7:45 a.m. Thankfully, we have some dear friends in Atlanta who allowed us to stay with them that night. As nervous as we were...no sleep for two nights...it couldn't have gone any better. They took great care of her. The procedure went without a hitch. They had to go deep for her muscle tissue sample, and also took a skin sample from the incision sight. She was really sore Wednesday and Thursday, but is doing really well today! We can take her bandage off next Wednesday.

Now the hard part. We wait. It will take 6-8 weeks to get results from Dr. Schoffner. In the meantime, we are praying for COMPLETE healing of our sweet girl. We believe that God is still the Great Physician. Would you believe that with us? We appreciate your prayers.

Please continue to pray for us over the next few weeks. We are praying for a quick recovery for Clara, patience as we wait for results and for our house to sell so we can move to Michigan.

Well, I must be off to the grocery store! I have not shopped in three weeks, and my children are very tired of eating "whatever I can find", not to mention, I need to get out for a little while. Eight days in Michigan and surgery can wear a Mom out! Many blessings to you all!!

Love,
Jeannie