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 him...it 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!
Jeannie

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!

Love,

Jeannie

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. :-)

Blessings!

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!!

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 up-to-date....so 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.

****UPDATE****

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.

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We Love You All!
Jeannie

Hippo for Clara

Over the last two years, one of the main treatments that has been recommended for Clara over and over has been hippotherapy. This is where they have a really big hippopotamus chase...no, no, no. I am just kidding. :-) In all seriousness, the word hippotherapy is derived from a Greek word'"hippos", meaning horse, and put with therapy..well, literally, therapy with the aid of a horse. A horse's movement in the pelvis mimics that of a human, almost exactly. That movement is especially helpful to strengthen the muscles in the pelvic region of a human, which is where most of Clara's weakness is. So, we have been trying for about a year now to get this all lined up. It has been a matter of unreturned phone calls, no therapy in the summer because of the heat, and then more recently, we wondered if it was worth it to pursue it, knowing we might be leaving soon. We took it to the Lord in prayer, praying that He would close all doors if this was not His will for Clara, but at the same time, opening them wide open if it was, in fact, His will. The very next morning, I received a return phone call from about 4 months ago regarding setting up an evaluation. If that isn't wide open, I don't know what is. :-)

The evaluation has multiple purposes. The first thing they have to determine is if Clara is a good candidate for this type of therapy. Once this is decided, they have to decide which horse will be best suited to work her appropriate muscles. Just like people, each horse has a different gait, targeting different muscles in different ways. Additionally, since this therapy will work her muscles constantly, with nor breaks between "activities", they usually put the "easiest" horse with beginner patients. They told me not to be surprised if she can only last for about ten minutes at first.Needless to say, this has all been very fascinating for me to learn!

Her evaluation was today. I prayed so hard that all would go well. It was almost funny to watch it unfold. From the minute Ms. Wendy (the therapist) walked in the door, it was almost as if Clara flipped the "time to show-out for another doctor" switch. As always, she did things I have never seen her do while "performing" for this new audience. :-) Of course her sidekick, Megan, was right there with her. I wish I had a video camera! All in all, it went well! She has been approved for hippotherapy and Ms. Wendy has a horse in mind for her already. Now we just have to get it all lined up with the ranch. Thankfully the ranch is only about 30 minutes away in Watkinsville. (another answered prayer!) This therapy will be once a week, in addition to her regular physical therapy with Ms. Lee. We are finally having two sessions per week...just what her neurologist wanted. It was such a blessing seeing how far she has come during her evaluation! She is doing so many things she couldn't do a year ago...or even 4 months ago. We see her getting stronger, which is a GREAT sign! We have also joked that the reason God gave us Megan was for Clara...she is the best PT EVER!! Clara has to keep up with her!

As always, money will be an issue, but we are believing God for His provision. Insurance should cover the sessions...at least most of them...(we might cut it close towards the end of the year). However, the barn requires a $25 per week fee to "feed the horses" that insurance will not cover. Please pray with us that God would provide for this. I don't think we can cut our budget much tighter, but we have seen Him stretch it many times! We know he can!! I am also doing some sewing projects and such to bring in a little extra income. Please pray that God would multiply my time so I can get it all in!

We are still waiting for biopsy results. I talked with her former physical therapist the other night and she said not to be surprised if it took more like 10-12 weeks. Either way, we are STILL waiting! Either way, God is GOOD all the time, and ALL the time, God is GOOD!!

Friends, thank you for your prayers and encouragement. Your love and support has meant more to us than you will ever know!

Have a great day!

Love,
Jeannie

Updates and Blessings!

Hi Everyone!

It has been a while since I posted an update here and so many of you have asked "How are things going with....?" Truly, there are so many ways to fill in those blanks right now it almost makes me dizzy! I thought this would be the easiest way to update everyone on everything. :-)

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Clara-We still have no word yet on the results of her biopsy. This Wednesday will be 7 weeks since she had it, and they said it would be 6-8 weeks, so we are hoping for word any day. Thank you for all of your prayers up to this point! Please continue to pray for speedy results and for healing of our sweet girl.

She is doing very well right now! She has had less pain than ever in the last month or so, and we think this is a good sign! She started with a new physical therapist (Ms. Susan got married and moved away) and she is wonderful. Her name is Ms. Lee and Clara already calls her "Lee-Lee", which I think is hysterical. :-) We are meeting with another physical therapist on Thursday to see if we can get her qualified for HIPPO therapy, which uses horses as a tool instead of balls, etc. We have been trying to get her going on this for about a year now, so please pray all goes well and that God would provide the funds needed. Insurance covers all of the therapy fee, but we have to pay $25 a session to "feed the horses" if she is accepted into the program. Right now, that might as well be $1000, but we know God will provide if that is His will for her life.

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Life Action- We are still as excited as ever about our ministry! As frustrated as we get that we are not in Michigan, we also know that God's timing is perfect and that He has us here for a reason. Right now, we are thankful to be near Clara's doctors and depending on what treatment is prescribed for her upon learning the results of the biopsy, we may need to raise more support before we go. For that reason, I am thankful we are still here. It would be VERY hard on our budget to try to pay for expensive treatment on what we have already raised to live on-a very modest yearly salary. We have not had many people look at our house recently, so we continue to pray that God's will would be done and that our house would sell in HIS time. :-) We did show the house last Sunday for the first time since July. The market is still slow, but God is most definitely still God!

Some months ago, we talked with some of our friends about the remote possibility that we could move to MI without selling our house first. Since many of you have asked about that, I thought I would go ahead and address that, as well. There are some families already in Michigan, waiting for their homes to sell. There is very limited space at the camp for these families. If God led us in that direction, we would surely obey, but for now, that does not appear to be His plan. Additionally, the salary we have raised for ministry is less than what we currently live on. There would be no way we could maintain our current house payment, living expenses, and Clara's medical bills on that income. We are anxious to get there, but would never want to go ahead outside of God's timing.

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We have a new nephew!! Diana had her baby on Friday night. She gave birth to a GORGEOUS 9 lb. 3 oz. baby boy named Noah. He is absolutely perfect and such a gift! THANK YOU LORD!!

About 37 minutes old

All cleaned up....what an angel!

A very excited Aunt Jeannie!

I guess that is all, for now. Until next time.....

Jeannie