Sunday, November 29, 2009

Failed Attempt

Hi Everyone,

I hope you all had a wonderful Thanksgiving and a blessed time with friends and family this week! We certainly did, which is why I am delayed giving you all an update on Clara's neurologist visit. This was a highly anticipated visit, as he was supposed to translate her test results for us. However, once we arrived, we discovered that, for whatever reason, he had not received the results on the same day we had. Needless to say this was VERY FRUSTRATING! I was not upset with wasn't his fault. He asked me if I could tell him what it said, but I quickly reminded him that my degree was in music and not biochemistry. I still have not received the results from the genetic testing. Furthermore, the report did state that they (the neurogeneticist) would be seeking permission to do further genetic testing on the piece of muscle they took, and Dr. Berenson said he had not received that request. I know they can only keep the muscle alive for so long, so we are praying they will not have to do another biopsy. I forwarded the results to Dr. Berenson and he said he would receive them on Monday, review them, and then give me a call on Tuesday or Wednesday. Apparently, nothing like this has ever happened. Of course, it would be us who got to experience it first. :-)

I did ask him about Clara's drooling. If you have ever been around her you may have noticed that she drools a lot. I am forever wiping her chin off. He said that it was just part of the other we are dealing with. She has facial hypotonia (weakness) and when her muscles get tired, she drools. The GOOD NEWS: Her reflexes were PERFECT!!

Please continue to pray that we would get a diagnosis soon so we will know how to help our sweet girl and get her out of pain. I am also praying for a balance right now between her and the others. Clara wants to be held a lot, and while I certainly want to hold her and comfort her (I can't imagine being in pain all the time), there are so many times I am holding her and longing to hold Megan or spend time with the other two. There is only one of me and I am praying the Lord will give me discernment and wisdom to be a good mother to all four of them, leaving no one feeling left behind. I don't want Clara and her condition to ever be a source of resentment for the other three girls.

I pray you are all having a wonderful time preparing for Christmas! What a glorious season of the year as we celebrate the coming of our Savior!

Blessings to you all!

Thursday, November 19, 2009

Papa's Pride and Joy

This past weekend, we went to visit my parents. Jan Brett, one of my most favorite children's authors/illustrators was in Newnan and I was dying to meet her! (I will post those pics soon!). While there, we couldn't resist a photo op with my Dad's 1963 Chevy pick-up truck that he just remodeled. Here are our Ga Dawgs!

They are not in the right order because I am having a really hard time with pictures on my blog. Robyn...HEEELLLP!!

Megan and Clara in the front seat together.

The truck. So pretty I am almost afraid to touch it!

Future cheerleaders? Only if the uniform is as modest as what they are wearing in this picture. :-)

Hangin' out on the tailgate. We can't call it "tail-gating"... There's no food!!
Have a blessed day!

Thursday, November 12, 2009

A Small Bit of Encouragement

I have to say that I absolutely adore out pediatrician. I have always felt that she, and her partner, really care about our family and they are always so willing to talk to us about anything! They have a very special way of putting my fears to rest, not to mention, I am eternally grateful for the doctors to whom she has pointed the way. They both know our family without looking at our charts, and that's nice.

Well, today I had to take Megan in for a wicked cough that, thankfully for the moment, is just a cold. I was a little bummed because Dr. Aldridge, our regular pediatrician, has the day off today, so we had to see the "new" doctor who is working part-time there now. She was wonderful and thorough, but without the personal touch, of course. She just met us. After we were through, though, Dr. Garrard, the other pediatrician popped in "just to see how things were going". I gave him an update on all the tests and shared with him my fears in light of Clara's abnormal reflexes at her neurologist visit back in August. He said that, typically, if reflexes are a sign of degeneration, they are "hypo" instead of "hyper". Hers were very "hyper". Coupled with the fact that she is making great progress in physical therapy, he said those were very good indicators that her disease is not progressive. For now that makes me feel much better. Just thought I would share. :-)


Created in His Image

About a month ago, Jeff had a week off from work and some friends offered to let us use their camper, so we were off to a much-needed vacation. Mentally, we were all pretty exhausted and in definite need of some family time. It rained most of the time we were there, but on one clear morning, I went outside with my coffee to sit by the fire that my strapping husband had just built. ;-) As I sat there, I couldn't help but notice one of the most interesting trees I have ever seen. Yes...I said "tree". It was all gnarly and crooked where it had, very obviously, had to struggle its entire life to get light from the sun. At that very moment, I felt a lot like that tree...crooked a gnarly from having to struggle my entire life for just a glimpse of light from the Son. Right beside it was an identical tree, except it was as straight and beautiful as any I have ever seen. I thought, "Just figures. Of course that tree that is like me is standing right beside the perfect tree...a tree that has never had to struggle, that has never known the struggle of being overweight or had struggle to make ends meet, or never known the pain of having a child that has problems you can't fix. Not to mention, that 'perfect' tree has never known the pain of its parents' divorce, had to go without things it needed, was never neglected or hungry as a child, never knew abuse, and never knew the pain of being abandoned by a mother. It just figures....story of my life. God has always brought the most perfect people into my life to stand right beside me. That must be exactly what it looks like in His eyes." (Did I mention I was in need of a break?) The longer I sat there and pondered this tree, God began to really work in my heart. First, He showed me some roots of bitterness that had really taken root in my heart (I know you are surprised by this) and showed me some areas that I had never given thanks for. Actually, for the past few months I have felt totally abandoned....waiting for test results, waiting for our house to sell, struggling to take care of the many things on my plate....Where are You??? God was right. Where was my gratitude? Gratitude for still being here, close to Clara's doctors, making it very easy to get her the help she needs right now. Gratitude for four beautiful girls that bring so much joy to my heart and a husband who, really, couldn't be much better, and truly, as heavy as my heart has been about Clara, He has protected her from so much. Gratitude for a family that loves me, a wonderful woman who stepped in to be my Mom when I was 13 years old, and a church family that I love so dearly. Gratitude for our calling into a ministry we are passionate about and love....the list goes on and on. So, as I sat there pondering this tree, God really used this time to soften my heart. All at once, it hit me. That perfect tree didn't represent other people at all. It represented the One who came to earth, firmly planted in the soil of our Heavenly Father and never struggled to see His light, because He never wavered, never sinned, and well, really, He IS the Light Himself. That crooked, gnarly tree represents us all....struggling to get to the light, but still standing. But what a beautiful picture of what it means to be created in His image, because even with all that crookedness, that tree was still beautiful, and had it had a perfect life, would have looked just like the tree beside it...but I don't know anyone who has had a perfect life. That's why we need Grace, and Grace is given so abundantly. I know that sounds like a lot of thinking for one tree, but why wouldn't God use something from his wonderful creation to, so gently, speak to me the very way I needed to be spoken to? He really is So very good!

Have a BLESSED day!!

Thursday, November 5, 2009

What We Think We Know, So Far

The good news is, the reports are in, at least most of them (we are still waiting on the genetic testing). The bad news is, they are written in "genius-ese". I am so deeply thankful for so many of my family and friends who have been praying daily for our sweet Clara, and it is for this reason that I am going to go ahead and post what little we know. I was going to wait until I had all the facts, but I have promised to keep you all here goes!

We received the reports in a secure e-mail attachment on Tuesday, late in the afternoon. As we suspected, it is a lot to digest. There were 22 attachments, but the first one said, "Summary", so we opened that one first. I had to read it three times (all 18 pages of it) for anything to make sense. I called my mother-in-law, the Nurse Practitioner, and Dr. Aldridge, our Pediatrician, right away. The problem is that this stuff is like the rocket science of medicine. While individual reports may make sense, putting the pieces together is not so easy. Any of this could change once we meet with the neurogeneticist again, but for now, it looks like Clara does have a Mitochondrial Disease, although it looks like they are recommending further testing to narrow down which one she has. That group of diseases is VERY broad. Her body seems to stay in a state of ketosis, which is the state of a runner's body after a marathon. That alone would explain her pain and fatigue. There were many warnings about children with these diseases and keeping them free of viral and bacterial infections. Apparently, neurological problems can be triggered if they are sick...especially with fever, and the letter said that if she got sick, even with a minor illness, she may have to be hospitalized for monitoring. Thankfully, we are rarely sick; I can't remember the last time she had a fever. That alone makes me so thankful God called us to homeschool. There was a LOOOONG list of medicines she cannot take. While I am trying not to get too worked up about anything, especially since I am not absolutely sure about most of this, there was one thing that really scared me. Many of you remember my post about the neurologist visit we had two weeks after her biopsy where her reflexes were abnormal. There was a part of the summary letter that explained mitochondrial diseases and it talked about the way they affect the body and how these disease attack systems of the body. The one attacked most commonly is the nervous system. Once again....sick at my stomach. I can't go on too much here without crying, but please keep praying. She is making such great progress in physical therapy right now, I just have to believe this is all going to be okay.

What I DO know is that God is still the Great Physician and he knew Clara before one of her days came to be. He has her in His hand and, as hard as it is for me to fathom, He loves her more than I do and He has a perfect plan for her sweet little life. I believe with all my heart that He sent her here for a reason and I can't wait to see how He uses her! I also know that all things work together for good to those who love the Lord. My prayer is that He would use this for HIS glory. We continue to covet your prayers. We have an appointment with her neurologist the day before Thanksgiving (I am trying to get that moved up) and I need to contact the neurogeneticist's office today to set something up . While they may be the ones who understand all of this here on earth, God already knows...He didn't need a biopsy to show him. None of this has surprised Him at all.

Please continue to pray for COMPLETE HEALING for Clara and and for wisdom for us as we continue through this process. There is still so much we don't know. Thankfully, she doesn't seem to be in as much pain lately, but she has been very fatigued. Thank you for your love and concern. We will post more as we know it.


We have a friend who is a biochemist who took a look at the report. He understood it (it's all biochemistry) and basically, he just said that her enzymes are mutating, but without the genetic reports, we don't know why. Apparently, that is the simple version. :-) I am so thankful for the people God has put in my life! Basically, so far, it seems everything else I wrote and understand is pretty much accurate. Also, there is no point in scheduling these appointments without the genetic testing, and so, we wait....again.

We Love You All!