Aloha

The last few weeks have not seen a lot of changes for Carly. Her seizures have decreased in intensity and frequency a few times as her seizure medication has been increased, but each time they have eventually returned. The medication reached the maximum dose last Friday and for a few days she only had 2-3 short seizures each day lasting around 30 seconds but they are back to 7 or so a day that last anywhere from 3 to 15 minutes. When the seizures first started we were told that it may take a few months of trial and error with a short list of medications to get them under control, and it looks like we aren't there just yet. Carly will have a few blood labs and another EEG on Tuesday to give some additional insight on how she is doing and the neurologist will either continue to increase her current medication or begin the taper up with a different one.

While Carly has been dealing with this issue, we had the opportunity to go to Hawaii for a part business (a work convention) and part pleasure getaway. We were a bit concerned since Carly's seizures were not under control, but the neurology team assured us that the seizures were not an imminent danger to her and they felt that Christa and I could care for her just as well in Hawaii as we do at home. It ended up being a great time away in the sun, and Carly had many moments when she was clearly enjoying herself. From her first bite of fresh pineapple to her first session of floating in the ocean (ok maybe she didn't love that, but in the end she did seem relaxed) she definitely liked island life. Christa and I got into the island life right away too and it was a great way for all of us to relax a bit as we try to help Carly get past this hurdle.

Love, Brad

Working Under The Harvest Moon

Carly's week has been ok. Last week she was fussy for much of the day, but with several teeth coming through, a little constipation, and some seizures, who could blame her. Two out of those three have eased up for her, but she is continuing to have occasional seizures. She started taking her anti-seizure medication last Monday, and these medications are typically started at very low doses and then increased every four-six days until an effective dose is found. At this point Carly is still having 2-3 seizures a day and they can last anywhere from 2-10 minutes. It can often take several weeks to find the right dose, so we will continue until the seizures finally stop or we reach her dosage maximum. If the current medication does not stop her seizures, there are others to try. It is very important that we get these seizures under control as quickly as possible though, because if they go unchecked they can escalate to more critical seizures and her neuro-development will likely plateau as she continues to have them.

Carly is doing well otherwise, and she seems to be looking around more and more each day and loves to test out her new teeth by chewing on her stuffed carrot. It is clear that a lot is going on up in her head right now and we will continue to surround her with love to help get her to the next step in her recovery. You can help us by continuing to envision Carly as the perfect, healthy little girl that is her true self.

Love, Brad