Kamryn Update-May 2nd

Kamryn had a good day today. Still no seizures outwardly apparent while on the phenobarbital. That is a day and half seizure-free. : )

She had more labs done to look for metabolic causes, another EEG, a MRI, and an echo cardiogram. We got the results from some of the lab work that looked positive and ruled out some potential causes, but are waiting on results from the other tests. Still no cause to be found, but we continue to rule out plenty of potential conditions. Sometimes they never find a cause for neonatal seizures, so it isn't terrible that we haven't found one yet. But that doesn't mean that we'll quit looking.

Kamryn woke up a little today and fussed for a little while, making the nurses hold her. (She didn't much care for the pacifier.) All she wanted was to be held, which we were happy to oblige.

We have met more different types of health professionals than one would ever care to, in the last couple of days. Scott and I spent a lot of time talking to the metabolic geneticist today and he had a lot of positive things to say. Every time a lab comes back, it seems to rule out a few more of the litany of potential causes he has on his radar.

Tomorrow we hope to get the results of the other tests with more good/no news. Kenedy and some of her grandparents will try to visit if she continues to improve.

Thank you for all of the prayers and support. Everyone has been wonderful in trying to care for us from their various positions around the state. We'll be updating this website daily (as best we can) so feel free to use this as your source of information, if you can't call us or a grandparent.

Below are some pictures from today. The ones where she is completely wired up is from her EEG. The third is from tonight where we got to spend sometime holding her. She is still hooked up to a bunch of contraptions, you just can't see them from the angle of the picture.

Looking forward to bringing you more good news tomorrow.

Scott and April