Shaffer L. 390

So, Lucy's MRI came back almost normal. Her cerebellum is a little lower than it should be, but not enough to categorize her as having Chiari 1 malformation. Chad and I read online that this can cause poor coordination and balance and weak muscles...so that makes sense! She also has delayed mylenation of her neurons which from what we understand, this means that the mylen that should be coating her neurons and sending signals is behind and not equal to her chronological age. There is no treatment other than the early intervention therapies that we have already been doing for 6+ months and she will make progress at her own pace.

And now we have spent the night at the children's hospital in Danville while she has an extended EEG to determine if she is having seizures and we received some good news this morning. They have not seen any seizures taking place, although her brain is sending off "sparks" that do have the potential to be a seizure. So I guess it is not 100% good news, but we will take it! The doctor said that since she has not seemed to have any real seizures so far that the risk for the sparks becoming a seizure is lower. He said that the sparks and any possible absence seizures that could take place will not cause any damage to her brain. The risk is that a spark has the potential of becoming a grand mal seizure which are dangerous, do cause damage to the brain, and can make her stop breathing. Chad and I were given the option to either start her on a medicine called Kepra to be used as a preventative measure or to just watch carefully and call the doctor if it seems like something is changing or has happened. Kepra has only been around for 10 years and since we have no evidence that she definitely is having seizures and since we obviously can't predict the future to know if she ever will, we chose not to start the medicine. I obviously keep an eagle eye on Lucy anyway and since I get the pleasure to spend all day, every day with her, I will certainly be able to keep track of any suspicious changes or behaviors. The doctor also said that the sparks are not causing or exasperating the delays that she already has, but that he believes the hypotonia, the developmental delays, and these sparks are likely all being caused by something else, but that we might not ever know what the cause is. That is frustrating to me because I want to know, but chad said "Who cares as long as we can help her get past it!" and that is true.

So I felt so incredibly relieved and overwhelmed today when we got this news. The other day when we heard that her EEG was almost normal Chad was so relieved, but even though I was too I was not able to unclench even a little bit and let myself feel confident until we got here and had the EEG done for longer. But now we have and it seems like everything is hopefully going to be okay. There are still dangers to watch for, we still have A LOT of work to do with the therapists since she still is so behind especially in her gross motor skills, but now I feel pretty sure that there is no big, life-threatening monster lurking somewhere inside of her. And then Chad said, now we didn't have to sit around and worry that she isn't going to be able to have a full and independent life because I did worry about that constantly! It wasn't that I worried that something very serious might be wrong with her and we would need to take care of her for all of her life that I worried about. It was that she was going to be stuck with us for all her life and not get to get away and do things for herself and be on her own. This worry consumed me in a gut-wrenching, heart-stabbing way. Instead of being rational, all I could do was make a frantic and depressing list in my head of all of the things I was terrified she would never get to experience. I'm not saying we are in the clear here, but with the tests we have done so far, it does look pretty promising that we will be able to overcome all of these things with Lu and she will eventually, hopefully be caught up, or close to it. I'm not really one for believing that everybody has to do all of the same things at the same time, in the same way, etc., but when it comes to things like this I understand the need for some standards and uniformity and we will just be happy that Lucy is able to catch up to the pack enough to see them, even if she is still or always just nipping at their heels. But after all of this, she just might someday be leading the pack and we will always just assume that to be a possibility too, and love her and support her, and be proud of her no matter where she ends up.