Our Day at TCH

Emilee's first appointment at Texas Children's. I'm a little nervous, but I know that it's just an evaluation for her palate surgery, so it'll be ok.

9:15 - quick snack for Emilee before leaving for the big city

9:30 - left the house

9:45 - had to stop by my office for some papers that I forgot (now I'm thinking that maybe we should had left earlier)

9:55 - Chevron (diesel... really thinking that we should have left earlier)

She's out for the ride

10:20 - whataburger (another stop, we'll get on the freeway sometime)

10:27 - FLYING HOTSAUCE - We decided that we don't like the entrance ramp onto 45 if you are going from 105, especially if the lady on the phone in the car in front of us decides that instead of merging with traffic, she was going to stop... so Chance had to stop really quick. I had a make shift table in my lap made of a Texas road atlas and had the hot sauce sitting on it... so when he stopped much quicker than usual.... THE HOT SAUCE FLEW!!! The resting place of the hot sauce is pictured below. =( I thought that it was just hilarious, Chance did not and Emilee slept through it all. (In the picture you can see the hot sauce on the bottom buttons in between the cigarette lighter things and then on the wood paneling on the right hand side. )

10:43 - Traffic around the 610 exit. We didn't have much traffic to deal with because it was the middle of the morning, which we were glad for that.

10:50 - Exit onto 288... *Chance Driving/Rachel in back seat with Emilee -- Directions and Harris County Key Map in front floorboard --- This due to the 10:27 hot sauce in flight sudden stop* Thankfully I read the driving directions from Google a couple of times, so I remembered where we were suppose to be going and then we just had to look for Parking Garage 16.

10:55 - Exit onto Holcombe

11:00 - Right turn onto Fannin... looking for parking garage. SO... down in the medical center they have Entrances. Being that I have only been there a couple of time, I didn't know if we were looking for entrance 16 or if it would say garage 16... Well, as we are passing by the first entrance number '10', I glance down further and it says Parking Garage 16... and there is goes.

So we begin to look for a way to get back around. All the right turns are just other entrances. Chance decides to stay in the right lane, but what's in the left lane... Light Rail Tracks!! There is a blinking orange sign above the lanes that has a picture of a light rail car... but do we know what that blinking orange sign means... NO! So we just stayed away from them.

11:08 - Still driving around.. Back on Holcombe

11:12 - Right turn on Fannin.... Again

11:12 - Right turn into Parking Garage 16 at Entrance 10 (that would have been nice to know when I was given directions!

11:13 - Entrance to Parking Garage.... we didn't know what to do. It read "enter credit card or push button for smartchip" Here's the conversation.

Chance: "What do I do?"

Rachel: "I don't know, I have never been here"

Chance: "Read it, what should I choose"

Rachel: "H**L, I don't know, push the button, get a smartchip"

Chance: "Ok, *pushes button* Here's your smartchip"

Rachel: "Thanks, so this is a smart chip, it's a piece of yellow plastic. It doesn't even have anything written on it" *puts smartchip in wallet so it's not lost* (assuming we'll need it to get out)

11:17 - Parked. Right next to the elevator! YAY! We learned that the parking garage's were not made for trucks.

11:18 - Lunch time for Emilee, she started crying back on our second trip down Holcombe because she was hungry.

Getting burped in the parking garage... Looks like she's thinking "HHHmmm where am I?"

11:24 - Emilee in the stroller for the first time. I knew that she would stay sitting in her car seat, so we left it in the truck. She wasn't really thrilled with the stroller.

11: 25 - In the first Elevator. NOW... when I was given instructions on how to get there, I was told to park in garage 16 and take the elevator to the 8th floor. Is there an 8th floor button on this elevator... NOPE!!! Imagine that. So there was a kind lady that instructed us that level 3 was a skywalk, so we said sure. Once we got to level three she showed us where the other elevator was so that we could get to the 8th floor. I'm glad that she was nice enough to tell us because the other people in the elevator just looked at us funny. Oh and we had a nice poopy diaper (first of three), so we had to change it first thing off the elevator.

11:40 - Checked in and waiting (Appointment time was 12:45). We were given a buzzer like you get when you go to a restaurant at peak dinner time.

12:50 - Buzzer begins to blink and vibrate. We go to the desk in the Plastic Surgery department, give them the buzzer and our paperwork (given to us by the buzzer issuer) and told to go down to room three and they would be in to see us in just a moment.

12:55 - Doctor comes in and introduced himself, but he wasn't the Doctor that the appt was with, this is because they don't have nurses, so he did Emilee's assessment. It wasn't much of an assessment, he looked at her palate for 0.8 seconds and then asked us a few questions and said that Dr. Stal would be in in just a moment.

13:00 - Dr. Stal comes in with the first Doctor (don't remember his name) and someone else also. He also looks at her palate, this time for about 3 seconds. He tells us that they will repair it between nine and twelve months. Talked about how long the surgery will take and that she would need to stay at least one night. He also told us that she will probably have ear infections because it's the same tissue that's involved and since it's missing, the fluid will hang out and cause more infections for her. Other than that he said that she needed to come back in four month and they would weigh her again (they didn't weigh her at this appt).

13:10 - So the appointment was over although we really didn't know if it was over, because they just left. We assumed that we were done and walked out back to the desk to ask and made her next appointment for January

13:12 - Approached by Speech Therapist in hallway while getting the phone number to the ENT that they recommend. We then went into her office and she inquired about her feeding and her weight gain. We discussed all of this with her, found out that the OT that showed us how to use the habermann bottle told us wrong. Not really wrong, but slightly incorrect. We have been squeezing the bottle on the downward motion of her jaw when we really should be squeezing on the upward motion. I had been talking to another mom of a PRS baby about the habermann and she had told me that it should be on the upward motion also, so I have been trying to re-train myself the last couple of weeks. So this was confirmed by the therapist and it made since because that's when she would be getting milk, so we are just helping her. But it's really hard because we are in the habit of the other way, but we are working on it. She told us about some sounds that she'll be trying to make that are "wrong" and that only sound like that because of her palate, so not to encourage them and things like that. I'm sure she'll bill our insurance for something

13:30 - Ate Chick-fil-a back on level three

13:45 - Change poopy diaper number two before heading back out to the parking garage to head home.

13:46 - Just outside of the parking garage elevator is a machine to pay for your parking. Reads-insert credit card or insert smartchip. OH, that's what that little piece of plastic is... (Good thing I put it in my wallet) how in the world does it know what time we got there. I put the smartchip into the machine, our total amount for parking appeared, I paid and then the machine says this... "Please take your smartchip with you"... WHY... I just put it in there and now your spitting another one out. So I took it. When we got to the gate to leave, we had to put it in another machine and it knew that we had paid. Creepy.

13:52 - We had to make a right back onto Holcombe, so we are headed away from 288, so we were just going to get on 59, wrong, missed that turn, so then we were just going to get on 45, wrong... So we are driving through lots of redlights, crossed the light rail tracks once and then came to this intersection ~ see picture below~

14:35 - We could see I 45, but we couldn't get on to it. Finally we made it onto the freeway and headed north.

Emilee was out as soon as we got in the truck, it was a long day for her.

15:30 - Back home...She was happy to be home for a good snack and a nap and poopy diaper number three.

She loves to be up on your shoulder looking around

So... after all of that... an entire day for one appointment... and we don't know anything else that we didn't already know. No referral to an ENT, no referral to a Genetics Counsoler... nothing but a quick visit with no new information. AND A SLIGHTLY ANNOYED MOTHER.