Sunday, September 30, 2007

Went to the zoo

Well, on Friday we went to see an ENT in Newport News (his main office is at CHKD in Norfolk). The reason why we went to see him is because I was told by Harlie's ENT in DC that we should also see someone who is part of her craniofacial team about ear reconstruction. He was recommended by Dr. Magee. I liked how he opened, "So, I see you need some more doctors." I love funny people. He spent a lot of time with us explaining everything. Basically, it comes down to this:

1. We need to test to see if she has the inner workings and ability to hear on her left side. The test is called an Auditory Brain Stem Response (ABR) test.

2. If the test shows complete hearing loss, then all we will need to focus on is ear reconstruction.

3. If the test shows that she has some hearing capability, then we need to determine how much and what we want to do about it.

He does not recommend ear canal construction (actually giving her a canal). He said that the path is never "normal" and the risk to hitting a nerve and causing facial paralysis is too high.

He prefers a Bone Anchored Hearing Aid (BAHA). The hearing aid is drilled into the bone above the ear.

As far as the actual ear building - he always sends parents to see a guy in Northern VA to talk about a prosthetic ear first before considering reconstructive surgery. He used to be a CIA disguise specialist. Pretty interesting, huh? But, we have plenty of time before we'll be looking into all that.

We also discussed her future jaw reconstruction surgery. He explained why it is so complicated. Especially with her missing some bones on the right side of her jaw. But, I will not think about this until I speak to Dr. Magee since he's the one that will be doing that.

So, as of right now, her ABR test is scheduled for October 23rd at the children's hospital in Norfolk. We will get the results immediately, which will be nice. Hopefully she wouldn't even have to stay overnight. But, with Harlie and anesthesia, I won't count on it.

So, enough medical stuff for now.

On Saturday, we (Tom, Murphy, Harlie and I) went to DC to the zoo. The Children's Hospital's Heart Institute sponsored an event there.

On our way up, I sat in the back between Murphy and Harlie. I do not recommend this. Especially for long trips. It took only a matter of minutes till I had regressed into a child myself.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"MURPHY! I SAID STOP TOUCHING MY SEATBELT!"

"Sorry, Mama." lots of laughter.

"YOU TWO, KNOCK IT OFF!" (that was Tom)

And while all that was happening, Harlie kept taking off her HME (the barrel thing that covers her trach). Literally, every 2 seconds. So, I keep saying, "No, Harlie!" To which she just smiles and laughs. And I have to put it back. Over and over again. I really don't know how I am ever going to discipline that child.

But we made it up there in one piece. And the weather was perfect. It was so nice to get Harlie outside. She kept on swinging her legs off the end of the stroller. It was really cute. And it was really nice to see our social worker (Kristen) and some of Harlie's nurses, and doctors. Especially since she is doing so well now. And it was good to meet other heart families as well.

Well, they had a raffle and they gave a lot of goodies away. And if you can believe this, we won the grand prize - a week's vacation in Myrtle Beach. So, now we HAVE to take a vacation! We are already looking forward to it. Funny, because I was really bummed we couldn't take a vacation this past summer.

So, then we leave. Get to our car, and we have a flat tire. Tom said there isn't just one nail in it - there are two! Funny how things balance out sometimes.

Well, that's it for tonight. Talk to you soon!

Take care,
Christy

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