Saturday, May 29, 2010

So it's been a while...

Has it really been two months since I last posted? I wish I had some grand explanation for why that is. I really don't. Things have actually been quite--dare I say?--normal for us these past two months. I think I got so caught up trying to keep us in our "normal" state that I put things like blogging aside. I guess you could say I was in full "prevent a crisis" mode. I kept thinking that since we hadn't had a true crisis in a while, we were due for one soon, and I was busy trying to keep that from happening.

That sounds like a good explanation, right?

Let's go with that one then.

And not the fact that I have been spending way too much time watching back episodes of Bones, and reading blogs about Bones, and Facebooking friends about Bones. Did you know that there is this whole online Bones community made up of thousands of Bones-crazed people? They have biggest fan awards and everything. And no, I have not joined this community. I'm more of a wannabe, a lurker, if you will.

Or there's also the fact that I kept realizing that it had been so long since I last blogged that I had way too much to say, so much in fact that I really didn't know how to say it in a comprehensible manner, and so many times I would sit down at the computer and type up a rambling post that I would promptly delete and, well, go back to checking out the latest behind-the-scenes photos for Bones.

See, the first explanation is best.

I am, however, prepared to make a Memorial Day resolution to you all that I will try my very best from now on to post at least twice a week about my adorable children.

I must confess, though, that I feel confident in making such a resolution only because Bones is now over for the summer. The fall might be a different story. Don't say I didn't warn you.

Onto what you really want to hear.

Camille has been doing really well. She has become much more social in recent months. I can usually make her laugh this great little grunting laugh by tickling her tummy or neck, or by saying "pop!" For some reason, she thinks the word "pop" is hilarious. She is still not sitting independently yet, but can sit for a few seconds unassisted. She can also get up on her hands and knees in the crawling position for a few seconds as well. We can tell that she wants to crawl so badly, most likely to chase around that crazy brother of hers, but she just isn't there yet. We feel like what is most preventing her most from being able to sit and crawl is her abnormal movement pattern (some call it ataxia, others dystonia). She has very jerky, puppet like movements, and this obviously causes great issues in balance and coordination. Jason and I have felt recently that these movements have gotten worse, and they will likely do another MRI of Camille's brain in July to see if something has changed that would be causing this. These movements also make it hard for Camille to sleep and eat.

Ah, sleeping and eating. The two biggies for our little girl. Camille is sleeping very well right now, and has been for the past two months. We are so thankful for this! She will usually sleep 11 to 12 hours at night, sometimes straight through without a peep, sometimes waking up but putting herself back to sleep after a few minutes of "talking". I always wonder what she is saying in those moments. We hear her on the monitor having some sort of animated conversation with someone, most likely her light-up seahorse who she adores, and then after a few minutes, she'll have put herself back to sleep.

As for eating, I'm really not too sure what to say about that at this point. About a month ago, we asked our GI if we could try just giving Camille her 12 hour night feed through her button, and then feed her only orally during the day to see if we could get her to eat more orally this way. Before, we had been doing the continuous night feed through the button plus several other button feedings during the day, with some oral feeding in between. Our hope was that Camille would be hungrier, and therefore eat more orally, if we just did oral feeding during the day. Well, let's just say that some days are better than others. Some days I can get her to eat an entire jar of baby food at one sitting, other days she will gag on the first bite and I can hardly get anything down. It's a work in progress, a work that I feel is so valuable. I want my little girl to eat. A post all on eating is coming your way. I've been composing it in my head for quite some time now. Get excited.

As for medical issues, the only really new thing is that Camille is taking her steroid for her CAH, and that has gone well.

Oh, and we saw a new geneticist.

Did that sound like an afterthought? I guess it kind of is. I decided shortly after Camille's hormone issues were settled that now that she was older and we had some of her symptoms figured out, that it might be an appropriate time to see a new geneticist. A fresh pair of eyes to evaluate her now that she was presenting us with more "clues" to her condition. I decided to make her an appointment to see a geneticist in Austin who is in the same group with her new GI. We have loved this group, and so I thought I would give it a shot. I had also heard from others that this geneticist was very "thorough." That sounds good, right?

After our appointment on Wednesday, I would say that I would agree with the "thorough" assessment. I also found that this geneticist, like our GI, was very "nice". But, nice no longer cuts it for me. I like for Camille's doctors to be "nice". I like them to be kind and compassionate and understanding. That's a real bonus for me. But I would give up all of those things in a heartbeat if I had a doctor with zero bed-side manner, but the drive and determination to figure out what is going on with my child. Bring on Dr. House. I can handle a little saltiness, as long as you throw in a lot of stubbornness and determination too.

This geneticist was not our Dr. House. She was nice, she was compassionate, she probably knew her stuff, but she had no idea what Camille had, and what's worse, she didn't seem to have any plans to figure it out. She took down all of Camille's history in a very "thorough" manner; stated how Camille had already seen several very good geneticists; and then, of course, gave us the whole spiel about how sometimes they never find out what a child has, and so we might want to consider accepting that as our reality.

I was okay on Wednesday, immediately following our appointment. It didn't hit me until Thursday morning how frustrated I was about it. I got so angry, probably more angry than I have been in a long time. I called a friend and literally shouted into the phone, "I'm so sick of these doctors! I'm sick of their 'I don't knows'! I am sick of them shrugging their shoulders at me, saying that they are very sorry but they have no idea what is going on with my daughter, and then expecting that to be okay! In what other stinking profession does someone get to say 'I don't know, and I don't have any plans to find out for you' and get away with it?"

Thank goodness for good friends who will listen to a good old fashioned rant.

But the more I thought about it, the more I realized that even though most of the doctors we have seen have not known what Camille has, and not seemed committed to figuring it out, what bothered me most about this particular geneticist is that she seemed surprised that I was still searching after receiving several "I don't know's". Is it that other parents get a "Wow, your child has something, but I sure don't know what it is!" and they're okay with that? They just take that and move on? Really? I can't imagine that anyone in my place would accept an "I don't know" and not continue to look for the answer.

Yes, I want to know what Camille has in order to know what her future will hold. Yes, I want to know what Camille has in order to be able to possibly seek out other families with children with the same diagnosis. Yes, I want to know what Camille has so that I can know if Henry runs the risk of passing this onto his children.

But most of all, I want to know what Camille has because I simply want to know who she is. Whatever she has is a big part of who she is. What better way to give your child, who has suffered so much, some sense of dignity than to figure out why she is the way that she is.

And so I guess I'll keep searching. I think it's only human to do so. And I think it's the greatest gift I can give my daughter, the gift of knowing who she is.

2 comments:

  1. Been following your blog for a while now, and waiting for an update FOREVER!!! This post has so hit home for me. I too have a medically complicated child who the doctors don't know what is going on, in fact one of his most recent appointments with his hematologist: "well the mystery of Sam continues." Who says that?!?!? Anyways I just wanted to say you totally have a sympathetic ear here, we are on GI #4, and hematologist #2.

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  2. Maggie, I can understand your frustration and hurt with you! I will keep praying for you all, Camille, and the doctors to have wisdom and persistence in determing how to help Camille and for you all to have some long awaited answers.

    My love and prayers,
    Jill

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