Drugged out kid?

So we heard from the Dr. about Sam's blood test results yesterday. Her liver panel was perfect. I didn't even know we were supposed to be concerned! About 6 months ago she had an elevated liver test and the pedi thought it was probably because she was under the weather when the test was done, so she wanted to repeat it. We repeated it in Feb. and never heard a word, so I thought it was fine. Then we wanted to do a med level check before she goes to Boston for the EEG next week (more on that) and the pedi ordered another liver test. So, it made me wonder if there was something up. I tried to call but we never talked about it. The blood test results came back yesterday, and she called to let us know that (1) the liver test was perfect, and no worries there (the concern I had, and I am not sure if this is the issue, was that her seizure med is processed in the liver, so it could be taking its toll) and (2) her phenobarbital (seizure med) level was really high. Her last med level (in Feb) was a little low, so the neurologist increased her dose. Now it is really high. We we were wondering if that was responsible for her being extra sleepy and a little cranky. We will call the neurologist today to see what he thinks.

About the EEG, we have to do an EEG every year to monitor if there is seizure activity. We have no reason to think that it will be normal, and the neurologist was pretty sure there would still be a need, but they like to monitor things. So, we have to go to Boston next week to do the test. It is my least favorite test (see previous posts on the CarePAge!!). But maybe now that she is older, it won't be so bad. Let's hope. We get the results the same day. We do the EEG at 10 a.m. and at 1 pm we meet the neurologist to discuss the results. I like that system. That means we can do it in one trip. And we don't have to wait and see what is going on.

In other news, her PT brought her a new walker yesterday. THis one is blue, as opposed to yellow. It is not new new, but new to us. It is newer than the other one, for sure. It also has different hand grips which will hopefully be helpful. We haven't tried it out yet, since yesterday was spent trying to get it all adjusted to her size. So, she has gait training today, and after her nap I am hoping to get her in it, and walk OUTSIDE!! It looks so nice and sunny today. We shall see.

In playgroup this week she was great. I didn't get to go, unfortunately. The OT was there to work with her, which made it easy on Fraser. They worked with her sitting in a slightly modified toddler chair, instead of the special chair that they have, which is nice. And according to Fraser, she did a lot of saying "hi" to other people, including other kids. I wish I saw that. She is so sweet.

She is really such a happy girl. I hope we can get the med thing straightened out.

Love, Lisa