Sunday, February 7, 2010

Update on the Baby Girl

I wanted to put out an update about the Baby Girl. Our lives have gotten very busy since Christmas (thus the lack of blogging!!) Here is an update/nutshell of what is going on. We woudl graeatly appreciate your prayers as we wait for a final diagnosis.

As you know Claire had been diagnosed at 6 months old with hypotonia which is low muscle tone and she has been in therapy since then. We decided to visit a developmental pediatrician to get some more feedback on why she was delayed developmentally. As of the middle of December she was not crawling yet…a skill she probably should have had about 9 months and in December she was 15 months. The developmental pediatric specialist diagnosed her with Cerebral Palsy and sent us for a series of tests to find out some more facts regarding this. She had an EEG to rule out seizures (she was/is not having any). She also had an MRI to see if anything was going on neurologically. That is where the Cerebral Palsy showed up as an “almost definite”.

There is a possibility that she has another disease called White Matter Disease. White Matter Disease would cause her to degenerate over time. We are currently finishing our second round in a series of tests to rule this out. The first part of the series came back that she is okay in specific areas so we are waiting the remainder to find out for sure that she does NOT have this.

We have been able to get three different opinions on her testing results to date. All three have been fairly positive that it is ONLY cerebral palsy and NOT White Matter Disease. That said, we are also doing the tests to be certain that CP is all that we are looking at. Our final test results and consult with the specialist will be sometime in mid March.

In terms of the Cerebral Palsy, it appears to be mild and affecting the left side of her body more than the right. That is why there was the delay in sitting, rolling over and crawling. It was so precious that on the DAY AFTER we saw the developmental pediatrician Claire started crawling! She is so happy with herself and loves crawling and getting to where she wants to go! The CP appears to have NOT affected any cognitive areas of the brain—meaning that Claire’s intellect is not compromised! That is very good news.

Currently we are doing therapy five times a week. We have an incredible pediatric physical therapy clinic that we are utilizing and she is progressing. She is mastering pulling up on things and is moving towards cruising along furniture and also standing. They are excellent therapists who know the very BEST BEST strategies to get her to be here she will need to be. (My goal for her is to be walking by the time she turns two!) We also do therapy with her constantly throughout the day…taking little moments to do a repetition of exercises when she is on the changing table or when we are playing or in her crib. A lot of it is positioning her and helping her build the strength to do what she needs to do.

To say the least, this has been very hard, emotionally. No one wants to see their child struggle. It makes me sad to see her in the nursery with the other children who can walk and run etc...and her current physical limitation holds her back in other areas. That is hard to see. However, I have come to realize that no matter HOW sad it makes me feel it is not going to go away. The thing to do is face it. Deal with it. Do what is before us.

Ironically I could not ask for a happier, easier, more curious, beautiful child. She is truly a good good baby and lights up our lives daily...hourly...with her sweetness. I do not know what the future holds at this point, but I am looking at what is before me today.

Thanks for your prayers. :)


Vicki said...

So thankful for the grace you are experiencing in the midst of such emotionally-charged circumstances and that you're able to soak up the deliciousness of her precious personality and spirit.

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