Still Holding Out Hope

A really good thing that happened so far in 2010 is that our geneticist appointment with Texas Children's was moved up from February 18 to January 21. They had a cancellation, and I just happened to call at the exact right time to get the appointment. And, even better, the appointment is with the geneticist that we had hoped to see, the one that our neurologist recommended. A sign of our luck turning in 2010? Let's hope so!

Anyway, January 21 is THIS COMING THURSDAY! We are leaving Wednesday evening for Houston, and plan on returning Thursday evening, or Friday morning depending on if the geneticist wants to run more tests while we are there.

I am still very hopeful about this appointment. I am hoping with everything I am that this geneticist can pinpoint what Camille has, and put us out of our wondering, questioning, in-limbo misery. It has just been pure torture for me to not have a central diagnosis.

But here's the thing. I am so annoyed with myself for being so hopeful about this appointment. Why in the world would I still be hopeful about this? Our lives these past 7 months have been full of so many questions, and very few answers. We are really no closer to finding out what Camille has than we were when she was born.

In fact, I'm considering writing a children's book about our current situation. It may seem like I am having a psychotic break (and that is not out of the realm of possibility), but I was reading Henry The Little Red Hen the other day, and suddenly a sequel popped into my head. It could be titled The Little Girl Camille and would probably go something like this.

The frantic mommy rushes into the pediatrician's office and says, "Who can help me find out what is going on with my sweet baby girl?"

"Not I," said the pediatrician. "I think she is having digestive issues. I am referring you to a pediatric GI".

"GI, can you help us?" asked the frantic mommy.

"Not I, " said the GI. "I think she has a problem with her heart. I am referring you to a pediatric cardiologist."

"Cardiologist, can you help us?" asked the frantic mommy, getting more frantic by the minute.

"Not I," said the cardiologist. "I think everything she has going on is neurological. I am referring you to a pediatric neurologist."

"Neurologist, can you help us?" asked the frantic mommy, teetering toward the edge and just about to let someone have it.

"Not I," said the neurologist. "Surprisingly, her brain looks normal. I think genetics will have your answer. I am referring you to a geneticist."

"Please, geneticist. Can you help us?" asked the now desperate mommy.

"Not I," said the geneticist. "We have tested this child up and down the street and don't know what she has. We feel sure it is something genetic, but maybe you'd like to see a pediatric endocrinologist to check some of the secondary symptoms."

"Please, please, please endocrinologist. Can you help us?" asked the now wild-eyed and crazy mommy.

And yeah, we all know how that went. His comments really wouldn't be children's book material, so we'll stop there.

And again yeah, maybe our story would make a lousy children's book after all, but that's really a good picture of how I feel. I feel like we have gone around from doctor to doctor, begging for someone to help us, and no one can. It seems like we end almost every doctor's appointment with a referral to another type of specialist. I know this really isn't the case, but I feel like every doctor thinks, "Well, I don't know what this child has, and so I'm going to send them onto someone else and let it be someone else's problem."

So I'm really having to fight hard not to get too hopeful about this appointment because I don't know if I can take another, "I don't know." I am also having to fight off this crazy urge to bust into this new geneticist's office, and say something insane like, "Alright, doc. That's it. We're not leaving until we have a diagnosis."

All that said, we would obviously greatly appreciate your prayers about this appointment specifically. And even though I don't want to ask for this because I hope this doesn't happen, please simply pray for peace for us, even with yet another, "I'm sorry. I don't know. I just can't help you."

Because even if we get that yet again, we will be okay. Camille will still be our Camille, diagnosis or no diagnosis.

And I will still be the frantic, desperate, crazy, wild-eyed mommy, but that's okay too. I kinda like her. After all, she keeps things interesting in this incredibly boring life we have.