April EEG

Today Abby had her first EEG since the VNS placement in December. She was supposed to be sleep deprived for it, so by the time her head was hooked up to all the leads she was pretty grumpy. But as planned, she quickly fell asleep and remained calm for pretty much the whole test (1 hr).

As with most of our appointments, our little supporter and comic relief came along too. He spent most of his time eating and chatting with anyone and everyone who would listen. Today he ate a PB&J and drank his apple juice, occasionally shouting out an exciting new observation. Because Abby was resting during this test and the lights were dimmed, he would frequently turn to me and put his little finger to his mouth and whisper "shoosh, mommy. Abby's night night." I suppose soon they'll be able to do this without me!



On days like today I often wish I had another degree or more training. Today it would be EEG interpretation. As I sat watching Abby's brain waves dance across the screen, I so desperately wanted to know what they were saying. But b/c the technician is sworn to secrecy, we resorted to chatting about meaningless, random topics that you might overhear any strangers talking about. So now we wait to meet with the neurologist who will decode the message for us this Thursday, and hopefully deliver promising news.

We know that the VNS has pretty much taken care of the 'startle' type seizures that she was having 20-30 every day. This is very exciting!

As for the grand mal seizures, they still attack in clusters. Sometimes several in one day and sometimes they space out to include 1 or 2 in a day for a week or so. There is no telling when she will have one except for a brief warning period right before it starts when we notice Abby signing "all-done, all-done" over and over again. Amazingly at this point we can often stop or delay the seizure from manifesting itself fully by using the VNS magnet. This is so wonderful! It doesn't work every time but when it does we feel a wave of thankfulness because we hold something tangible we can use to keep her comfortable.



Next on the list this week:

An upper GI series first thing Thursday morning, which also includes the insertion of a pH probe. She'll wear this home for 24 hours. We are praying it will show the doctor an accurate picture of her reflux status. The last pH probe she had 2 1/2 years ago didn't give us anything to work with.

Abby has also started receiving home-bound services through her school. Due to prolonged illness and crazy fever patterns we have kept her home most of this semester. The OT came last week and we are hoping to see the PT this week. It's good for me to be reminded of what I need to be working on with Abby while she's home. Plus I need ideas on how to keep her focused and entertained. This is my biggest challenge. It's so different than teaching Josiah. He's so independent and playful! He doesn't need my help to have fun. With Abby, I need to be literally hands-on for her to interact with her environment at all. So lately I've been trying to come up with a more creative routine so that I'm interacting with both kids during their waking hours appropriately.

Another area I wish I had a degree in!!!