Thursday, May 21, 2009

We are Here in Houston

Well, here we are in Houston, TX.

The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!

Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.

I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.

When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!

We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.

Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.

So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:

I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....

I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)

So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.

When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.

I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.

In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)

ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.

I think that's all we have to report for now.


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