The Post I've Been Avoiding

Ok, here it goes. I have been avoiding blogging because I feel like if I don't put it "in writing", it isn't real. But I know it's real and we need your prayers.

Last Thursday Jenna was sitting up playing with some toys. I was gathering shoes and hats for our daily walk when I noticed her head jerk. It was a quick jerk off to the side which she did 2 or 3 times, then went on playing. I thought to myself, Hmm, that was weird. I thought maybe she was just losing her balance or something. But then she did it again. This time I grabbed the camcorder that just happened to be on the counter in the kitchen. I recorded her for about 2 minutes. She did her "jerk" several more times. She was awake, alert, responsive to her name, etc the whole time. I wasn't sure what to make of it. I'm not a fretful person. I was a little panicky, but she seemed totally fine so I went on with our day.

On our walk, I replayed her "episodes" over and over in my brain. Could it be seizures? Was it muscular? When we got home I watched the video again and while I was watching it, she started doing it again. I had already talked to Brian about it and he had me all calmed down, but when she did it again, I went straight to the phone and called the pedi.

At first they made me an appointment for first thing Friday morning. Then, the receptionist called right back and said she had spoken with the nurse and she thought I should go to the ER. Grrr. I was NOT down with this plan. But I understood where they were coming from. After talking to the receptionist a little bit more about how she was acting, I told her I would call the doctors I work for and if they agreed I would go to the ER. I just wanted a second opinion because she was acting totally normal and I knew what would happen if we went to the ER (it would be test after test after stick after stick etc). As soon as I hung up the phone, they called right back and offered to let me bring her into the office. I agreed and started gathering diaper bags (one for her, one for Jacob). I called a friend (THANKS Marla!) to keep Jacob and off we went.

Jenna was still having episodes, although not as often. The nurse at my pedi's office saw a few. I don't know if my pedi actually saw one or not, but I showed her the video and she was puzzled. She said we needed to see a neurologist within the next week. She thought it could be ticks or it could be seizures or it could be neither but we would need an EEG to find out. By the time I got Jacob and got home it was 5 so I had to wait until the morning to call the neuro offices.

I left messages first thing in the morning for two different pedi neurology groups. By noon, I still hadn't heard back from either. I work for a pedi specialist and I hear all the time how hard it is to get in with these docs. Anyways, I decided I could not sit around all weekend without seeing someone, so I found a pedi certified chiropractor. He was able to get her in that day (Friday).

I showed him the video and he felt her neck and spine. He said he had never treated a child for this before but he would try. Jenna had some tight joints (vertebrae) at the top of her neck that he adjusted. He said we would be "cautiously optimistic" and that he still thought she should see a neurologist but he would continue to treat her and see what happens.

Saturday she was much better. She still had a few episodes but they were much less obvious and much less often. Same for yesterday (Sunday). I don't' know if it's related to the chiropractor or if it's just time/prayers that are helping.

As far as the neurologist goes, on my way home from the chiropractor on Friday, I decided I had waited long enough and it was time to take matters into my own hands. I called our Plano office (where I work)and told my friend who is the "office person" out there what was going on. She agreed to tell Dr. M what was going on and try to get me in to the pedi neuro group that is in the same office building. She called me back a few minutes later and said that she had spoken to their schedule person and the first new patient appointment was in early MAY! She told her that would NOT work and the lady told her to fax them a note with our info and state that how soon we need to be seen. So she faxed in our info and wrote that we needed to be seen within a week.

I still have not heard back from them (this all happened late Friday afternoon) but Friday night while I was bathing the kids, the other neuro group finally called. I talked with the nurse for a while. Initially she told me they had a new patient appointment the week of April 20. After telling her what was going on and that my pedi wanted me seen within a week, she said all her computers were shut down (it was after 6pm) but that she would talk to the doc about it Monday (today) and get back with me. She gave me her direct extension which was encouraging.

So that's where we stand right now. I'm waiting to hear back from both neuro groups. Who ever can get us in the soonest is probably where we will wind up. I hope to get Jenna in this week. She is still having little episode but they are smaller and less frequent than last week.

I am trying not to let my brain wonder. I know it could be something horrible and it could be nothing at all. I have felt a peace about the situation all along. I can't explain it. I just really feel God's presence and know He is in control. So, with that said please keep Jenna in your prayers. I am praying that we wind up with the right doctor and that we are able to get a treatable diagnosis soon. I also pray that whatever testing has to be done is easy on her.

Thank you for your prayers.