Baby Steps

Monday, December 5, 2011


We were released on Saturday to go home and monitor Piper. It got to the point at the hospital where we were really only talking to our neurologist and all of the other doctors and nurses didn't have much to say besides wait and see what the neurologist says. It was getting a little frustrating having to repeat the entire story of the past 18 days to a new doctor and nurse everyday.We felt comfortable coming home to watch her here.

Her new medication should be established by next week and we are monitoring her like we did in the hospital. Our methods of monitoring her and keeping data are pretty detailed, I guess that's what you get with an engineer and an OCD teacher. We write down everything she does so when we go to the epileptic specialist we will be prepared. She is still having small seizures but nothing compared to what we saw the first time. They seem to be a little better on this medicine but not by much. She is having them at night and it wakes her up out of her sleep. She also has her days and night confused again so she isn't sleeping very well at night. Hopefully we can get her back on schedule soon.

We go on Wednesday morning to get her blood drawn so they can do a trough on her levels. This is measuring the amount of medicine in her blood to determine if it is at a therapeutic level. If it is at a high level and she is still having seizures it means the medicine has failed and we try something else. There are not a lot of options left as far as meds go because she is so little.

We have an appointment at Emory for jan 26 but they are trying to get us in earlier. Justin will be traveling for 2 weeks in jan so hopefully we can go when he is able to. The specialist is going to help us get started on a diet that is used called the ketogenic diet. It is an intense diet and you have to measure and keep track of everything that goes into her body. From the research we have done it works well when medicine has failed. It will be a full time job for me just preparing her meals but if it works it's worth it.

She is still happy and playing as much as she can between naps. The meds make her very mellow and sleepy but after a while she should get used to them. We are happy to be home and feel very thankful that things are mostly under control.

1 comment:

  1. Hi Annie! So great to hear you all are home. Will keep praying. I wanted to let you know I work with a great ketogenic registered dietitian at Vanderbilt if you decide to go that route, will be happy to be a resource for you.
    Lisa Woodbury Lillie