July 3

Yesterday we went to the doctor and had a pretty good day. First we had blood drawn for a couple tests, and you were such a big girl. Then we saw genetics and got a great blood pressure reading. Often times we can't get a pressure at all, and if we do it is obviously too high and wrong. Next we saw Dr. Louis, our special needs pediatrician and got five shots. That was yucky, but despite everything you were such an overall happy girl. Lots of smiles, cooing, kissing.



When we first came home from the hospital almost a year ago, you occasionally would do this weird "freak out thing" as Daddy and I call it. You would throw out your arms, thrash your head, and make strange barking noises. Your mouth would go to the side, tongue come out, and it just wasn't pretty. My very first thought was that you were seizing, but it stopped as soon as I would pick you up. When I put you back down, you would start up again. Like clockwork. So I made a mental note to mention it to Dr. Louis, and chalked it up for the time being as temper tantrums or some sort of panic attack. They pretty much stopped, only happening once every few months, and they never made it to the top of my priority list to tell Dr. Louis. But this past Monday you started doing them again, and have done them dozens of times everyday since. After these little sessions your mouth is bluish, your face very pale, your breathing is shallow, your heart is racing, and you are exhausted. I was pretty confident after this week they were seizures again, but couldn't figure out why it was so selective. All I have to do is pick you up, hold you for a good ten minutes, and it is over. So yesterday I told Dr. Louis, although I never expected you would show her. But sure enough, when we left you alone on the examining table you started to "freak out". Dr. Louis immediately said she thought you were seizing, but when I showed her how picking you up snapped you out of it and putting you down started it over, she had no explanation for that. We all agree you aren't doing this on purpose--you are obviously frightened when it is over. And over the past week you have woken up several times during the night and naps doing this. Very strange.

So Monday I am scheduling an appointment with a neurologist. In the meantime we are going to do an EEG and MRI to check for seizure activity. I am really hoping that's not the case--I have seen what seizure meds do to kids and it is just not good. We don't need any help being lethargic and listless. And we are also going to get a pulse ox machine for overnight. The breath holding thing is the scariest for now, so while I can always hear you over the monitor, this machine will let me know if your O2 sat levels drop scary low.

Just when we think we are starting to have it all under control, huh? It's ok, we know we aren't really the ones in control anyway. God knows what is going on in that pretty little head of yours, and I am just not going to worry about this for now. Bedtime for Mommy and Daddy. Love you.