My last post mentioned the UMDF walk that we participated in back in September--attempting to raise money to find a cure for mitochondrial disease. I am happy to report that Team Samantha raised over 5,000 dollars in support of the cause. Val and I were overjoyed and humbled by the support we received--both by those who walked with us, and those who provided donations. We thank you from the bottom of our hearts. We couldn't walk this journey without the love and support of our friends and family--so again, we thank you.
Samantha continues to struggle with her gross motor skills. She hasn't been walking independently these past few months. Although, we have been encouraging her to use her walker each day as much as she can tolerate. We went to see Dr. C in September who feels this may just be an evolution of previous brain injury and not necessarily anything "new" in terms of disease progression. The only way we would know for sure if Samantha's disease is progressing is to do brain MRIs often. As that requires sedation, we aren't going to do that. Val and I feel that the best predictor of how Samantha is going to do, is to watch and see how she is doing. For now we are comfortable with this approach, and hope that her walking may one day improve again.
Another newer, more recent symptom is she seems to be developing myoclonic spasms. For those of you who know and see Samantha often--you probably have noticed that she startles easily. This is most likely a neurological response to stimuli--it is common in those with brain injuries. Her newer symptom is basically an extension of her old "startle", it just looks more pronounced. It also seems to be happening with sensory stimuli (visual or auditory). It isn't anything that is impacting her too terribly in terms of quality of life, it is just something to notice and pay attention to. We will be seeing Dr. C again at the end of January and will discuss it with him further.
New symptoms aside, Samantha really is doing wonderfully. She is happy, and smily and continues to amaze us with her sense of humor and her sweetness. Her language and verbal skills continue to improve. Her current joys are watching Caillou and Glee, trying to make us laugh, and face timing on our iphones with various family members. Samantha loves snuggles, kisses, and hugs. Despite her physical limitations, she is having a ball and reminds us daily to enjoy each and every moment with each other.
Until next time,
Monica
