The Highlights

And once again, too much time has gone between posts. Even after my Memorial Day resolution and all. So sorry. We have been busy, however, and I figured I would write a post of mainly updates--the highlights, I guess you could say.

First, we are (yet again) in the hospital here in Waco. Camille started vomiting last week, and it just kept getting worse. She was dehydrated yesterday, so our pediatrician admitted her. And before you ask, no, we have no idea what brought all of this on. As usual, many tests have been run, and nothing stands out as the cause yet. Her blood work was little off, and her cortisol was low, but nothing too major. We are hoping she can go home late tonight or tomorrow. I'm afraid that I might have to do my beg/threaten/almost-get-myself-arrested-for-all-the-harassment routine again--you know, the one I whip out every time Camille is in the hospital and I feel like I am going to die if we have to stay one more minute?

And you know what the real kicker is? We get to do this all again next week. Yes, next Wednesday, we are scheduled to be admitted to Cooks for a 24-hour EEG and a new MRI. We're just a bunch of hospital hoppers, that's what we are. We like to switch things up at our house. Hillcrest in Waco one week, Cooks in Fort Worth the next. Why not, right? Oh, and it's gonna be fun times next week for sure. Did I mention that they are going to video Camille the whole time she is admitted so that they can try to match up her abnormal movement pattern and her brain activity? Did you catch that? Everything that Camille or I do or say for 24 hours is going to be recorded. I feel sorry for whoever has to watch that video. Talk about some bad reality TV. Camille and her mama do not like being cooped up in the hospital. Pray for us, please.

In other news, Camille has also had several apnea episodes in the past few weeks. I had mentioned before that she was now on an apnea monitor, but that she hadn't had any episodes. Well, I spoke too soon, as usual, and she has now had several. I realized after I posted this a while back that some of you might be wondering what the big deal about apnea is. A lot of people get apnea, right? Yes, apnea is common in newborns born prematurely and adults. But it is not common in a child Camille's age. Even more than that, they believe she is having Central Apnea, which is even less common and not easily treatable. Central Apnea means that there is a neurological cause--i.e. something in Camille's brain is not firing correctly and failing to remind her to breathe. To be considered an apnea episode, she has to not breathe for at least 20 consecutive seconds, which completely freaks me out when I think about her doing that in her sleep. Her heart rate is also continuing to drop repeatedly, but this is not new. It is, however, dropping lower than it was before, which was the main concern that her cardiologist had the last time we saw him. We will see him again in a couple of weeks, but I'm really not hopeful about any more answers in that department. I am still hoping that this is just a little quirk--abnormal for everyone else, but normal for Camille.

Speaking of "normal", despite all of these new developments, we have been enjoying our rather "normal" summer. Henry and Camille have enjoyed being outside, going to the splash parks, meeting friends at the museum, etc. I want so desperately for our kids to have as "normal" of a life as possible, in between all of the tube feedings and therapy sessions and doctors appointments and hospitalizations. And most of the time, I feel like our lives are completely "normal".

Then something will happen like Henry dragging out our air pump and pretending to hook it up to Camille to "feed" her. After all, one pump is the same as another, right? It's so crazy how "normal" tube feeding has become to all of us when I'm sure it is still so foreign to everyone else.

Or my most recent favorite--the stares and questions we are starting to get. I will be out in public with Camille, thinking that we look just like a regular mama and baby, but apparently we don't. I guess that as Camille gets older, it is becoming more apparent that she is not the "same" as other kids her age. For example, take this recent conversation we had at the splash park.

Woman (approaches me out of the blue and asks): How old is your baby?
Me: She just turned a year old.
Woman (confused): Oh. Is she (long pause while searching for the correct word to use) okay?
Me: (Totally wanting to just say "Why yes! Whatever do you mean?") Well, she has some special needs. No one is really sure what she has, though.

The conversation went on, and it really didn't bother me, but it just made me realize that however "normal" I think we are, I guess we're not.

But that's okay with me too. Who needs normal anyway?