Wednesday, January 12, 2011

Have I mentioned our lives are never dull?

All right this post may be somewhat long, but it will include cute pictures if you can stick with me.
Our Abigail has always been what I've described as a "great sleeper." It seemed from about three months on the only time we had trouble with sleep was one really large growth spurt, ear infections and teething. From somewhere (probably around 18months?) on Abigail started waking up around three to five nights a week. She was a late teether though so we kept writing it off, and writing it off. We would get a time of respite and it would confirm in our heads that it was only teething. However all of her teeth have been in for quite some time now...and we are still having sleep issues.
We had just started to realize this when we went to the developmental pediatrician in October; so I mentioned the sleep issues. Since that time she had a swallow study and we found out she was micro-aspirating. After we had that mostly under control we went through a time period where she was having excessive asthma attacks, but only at night. After our second trip to the e.r. in two weeks and a few conversations with doctors we were told GERD (acid reflux) and Abigail hasn't had a single asthma attack since we started on the medicine for that.
I feel like we are getting somewhere with all of the little things. We are sorting things out and starting to be able to pull apart what exactly is going on and what might be causing it. But, Abigail is still waking up at least two nights a week, generally crying and disoriented, often drenched in sweat, and sometimes because she has had an accident (she has been staying dry through the night for almost six months now). So we continued to feel a little perplexed. It didn't seem like nightmares. It just felt off. The doctors agreed.
And so we had an EEG to look for nocturnal seizures. On Wednesday morning we drove to Riley and got Abigail all hooked up to a thousand wires. We spent all day there and last night before driving home this morning. We won't know the results for a few days. We know that she didn't wake up at all last night or have "an episode" like she does at home. However the tech told us that it's not always necessary for her to have one in order for them to figure things out.
It was a long day for us. Abigail spent a lot of it watching Blue's clues from the large collection of movies that Riley has available. We spent the day anxiously praying (and feeling weird about praying) that Abigail would do there whatever she is doing at home. So even though that didn't happen we are still praying that whatever is going on would show up so we can help her to get the rest that she needs at night.
While doing a little research on nocturnal seizures I came across a medical journal (that's right) that said these words, "Nocturnal seizures were defined as those occurring after falling asleep or before awakening either at night or in the day-time." I believe it was authored by a Mr. Obvious.
Abigail after all the electrodes were on, watching some television.

Enjoying her McDonald's for lunch.

Every hospital trip deserves a balloon and a Popsicle...
...and that the Popsicle should drip down your chin and onto your clothes.

Papa is napping while Abigail snuggles and watches television.

Mama and Abigail coloring together.
She remained happy despite the tether keeping her in a small area of a room.

The backpack she had to wear that contained the part that all the electrodes were plugged into. It also had the cord coming out of it that sent all the data to...

...this computer. The camera on top was recording her and was the reason she could only stay in a small part of her room.

The amount of cord she had to move around with.

To end the day today, Abigail decided on an emergency trip to the dentist office. She was running through the house, fell and slammed face first into the refrigerator knocking three of her bottom front teeth lose, and giving herself an awesome split, fat, bottom lip. Her teeth appear okay, although the dentist said it's still possible there is nerve damage, and we won't be able to tell until a little later.
The best part about all of it was that Abigail still had glue all over her face from the probes last night, as well as in her wildly unruly hair that I was unable to put any moisturizer in since Monday night because of the EEG. She also had a large amount of blood on the front of her shirt. And me...well I was wearing some grey stretch pants and haven't showered today. Next time you see that mom out in public, remember, that maybe, possibly, there is some crazy circumstance that landed her where she is.

Hoping for a few boring days full of coloring, reading, and other two year old activities,


  1. The whole hadn't showered.......I've been there done that. Once before one of Joey's surgeries, I took the shower the night before. Of course I have that oily in less than 12 hours hair if it's not washed constantly. So by the time he was out of surgery I looked like a grease ball. They kept him overnight and I stayed with him and by the time he got out of the hospital that next evening........I could probably get enough grease out of my hair to fry chicken. To top it all off, I was so worried that night before his surgery I couldn't sleep and I can't sleep anywhere but my I probably had black eyes from no sleep.......and crazy eyes from being so tired. I'm sure I was really pretty.