EEG News

I talked to our nurse this morning and she said the EEG looks the same as the last one, which means they are still seeing seizures and we haven't made much headway in getting rid of them after 2 months of meds. This is very frustrating, but it is what we expected to hear since we have seen seizures all week. We had a rough weekend with Ruby. She seemed very tired and her muscle tone was poor. This affects her swallowing and sucking so eating was a big chore this weekend, although last night and this morning she ate a lot better. Usually when we increase her medication we have a few down days as her body adjusts so I am hoping that is why she was so out of sorts this weekend. It also could be because she is having a few more seizures too and her body is worn out from that. The seizures she has can cause major regression in development, so whenever she has a couple of bad days I get very worried that she is going backwards with development. She did have smiles for me this morning, which is always a blessing. We are hoping to hear back from her doctor yet today as far as where to go from here. I would like to try the steroid shots which are pretty severe, but I am so sick of going around in circles with all these meds and not getting anywhere that I am ready to take the next step.

On a more positive note, we were blessed to stay safe and warm during a nasty blizzard the last few days. We had some quality stuck in the house time, which was relaxing, but I am itching to get out again :) Today we have physical therapy and I am going to run a few errands; I have to go to the social security office to get Ruby a social security number for tax purposes. Tonight, we have a fondue party with Mark's work and my parents are babysitting, so I am looking forward to that.

Thanks again for all your prayers. I was frustrated this weekend, but this morning things are looking up again. I will keep you posted with what we hear from the doctor. Hope you all have a blessed holiday week!!