Update...Feb. 23

Claire is making some progress, though we are not without the occasional setback. Last week was rough as Claire went into a trend of having a 3-20 minute seizure every half hour with no awake time. We adjusted her meds on Monday and the turnaround was immediate. She has had long stretches of awake time the past couple of days and has been interactive in her therapy sessions.

We are encouraged by her slow progress. The muscles in her shoulders are getting stronger and we have very surprising moments of interactivity. Over the weekend, my Dad stayed with us. The weekend was pretty rough until Monday night when Claire suddenly got a case of the giggles. It was a treat for my Dad and quickly brought Rebecca and I to tears of joy--as it typically does. Rebecca tells me Claire has had several more fits of giggling since I've been out of town. We keep trying to capture that on video, but have yet to manage a well timed recording.

Claire began swimming pool therapy this week. This was an enjoyable session and appears to be an effective exercise format for her in addition to regular therapy.

A few weeks ago Claire had a vision test and was diagnosed with a Cortical Visual Impairment--this basically means that her brain struggles to decipher the visual world. We knew this already, but we hope her vision will in improve as she gets regular awake time and becomes more interactive with the world around her.

For those of you who have children with seizures or mitochondrial disorders, I would like to encourage you with some things that, strictly speaking, are not scientifically recognized. With Claire, we know that a high level of protein and regular bowel movements are key elements to her seizure control. There hasn't been many studies completed on this (likely because these treatment forms would be too cheap for anybody to wish investing research in to gain future profits). Honestly, I am not trying to be cynical about this, but the there are too few people in the fields of Neurology and Metabolic Genetics for them to go beyond profitable research and stem into practical research. That said, diet, therapy, and the monitoring of gastrointestinal activity really do help and can be confirmed by researching the many blogs of parents in similar circumstances.

A great lesson from our experience is that medicine should be personalized. Different people react to different drugs, treatments, and diets in different ways. This probably seems obvious. But the medical community is often blind to this and try to place blanket diagnoses, prognoses, and treatments. Push your politicians to repeal HIPA laws. That will allow developers of data analysis software to attack this problem on a large scale. Google has software in the works and so does IBM with their "Watson" computer-- they just need access to the large amount of data out there. Medical privacy is highly overrated and is just a way for Pharmaceuticals to block data that would reveal serious negative side effects of their products.

Meanwhile, never be complacent or inflexible. There is always hope. One day, our daughter will stand as living testimony to that. Thank you for your continued prayers.