Thursday, March 11, 2010

Test Results

I wanted to give you and update on sweet Claire as we visited the neurologist and got some test resuts back last week.

We didn't get any real answers when we went back after waiting on tests results. MOST of them came back fine. Three were red flags and one test was not able to be completed. Two of the red flags could be due to lab error as they tourniquet-ed Claire when they took her blood which can mess with the readings. Both of those tests were higher than normal but not significantly so...enough that we need to get them re-done (BOO!)

One of the genetic tests came back with a red flag in that she has a "clone" on one of Chromosomes...this being a duplicate gene sequence. As the report reads, "This may or may not be of significant issue" (in other words, not sure if that could cause what Claire has or not.) the other genetic test needs to be redone. She tested negative for 127 other genetic diseases.

SOOOo all that to say that we go for another MRI in June which would be able to tell if there has been any change in the white matter in her brain , which we do NOT want or if it has stayed the same which would indicate CP. We will also see a geneticist towards the end of April (when I get my husband back after tax season :) ) to follow up on the "clone" issue. Unfortunately we dont have access to her genetic information from her parents so that limits us but it may still be a valuable peice of the puzzle.

This has been so hard I cant even tell you. I love her so much and she is so precious..its hard to see her struggle. She is a very good baby and very easy for the most part...healthy, eats well, sleeps great, doing the normal 18 month things but not walking. She is progressing which is a blessing. She is cruising slowly holding onto furniture but very unsteady. We do therapy five times a week with our therapists and then also do some sessions as home as we can..alot of it is just integrating it into her play time. They are very positive and encouraging that she will be able to walk. So far no cognative areas have show up as damaged...she seems pretty normal in that areas. She definately is feisty and funny. She really does "get" stuff and communicates and interacts heartily with people. At play group she is precious which is encouraging to me. She may have a speech delay but we are following that closely as well.

So, there you have it. God was so gracious to me though that after crying a lot after our appointment, mostly out of frustration that we didn't know anything more, I felt him comfort me by reminding me to walk in faith...that was all that I needed to do. I am trying to day by day to do that and not worry about what the future holds or what the next test results will be. I have to be able to live without this huge anxiety hanging over me or I will be so stressed. Ive literally been so stressed these past two months that I couldnt sleep. This is definitely rigorous in terms of physically and just managing all the various components, BUT I am learning to just do today.

Thanks for your continued prayers. They mean so much I cant tell you. I have no doubt that God has hand picked Claire to be our daughter and that God has her story all mapped out. It doesnt make the day to day easier, but it is a blessing knowing that the King holds the road map.

You are so precious to pray for us and I DO FEEL THEM ALL THE TIME!!!


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