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!

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