Medical Center Round Two!

Emilee had her appointment with the ENT in the medical center this morning. It was a much better trip than last time. The appointment was at a different location than TCH, but just another block down Fannin. When we pulled into the parking garage, we decided to let them park the truck because it was only $7.00. So we got out and once again, had to go up in two different elevators to get to the 20th floor. The lobby had a really cool view. You were almost in the fog. Her visit went well. We got to talk to the ENT about her breathing and her surgery for her palate when he'll put tubes in. Then he looked in her ears... =( She had fluid in her right ear and borderline ear infection in her left ear, so she got an antibiotic prescription for that. We knew the ear infections were coming. Kiddos with cleft palates tend to also have ear infections because it involves the same tissue. Due to the airway issues with PRS, Dr. Edmonds also did an Endoscopy. So while she was still laying on the table, he put some numbing stuff in her nose and then we moved to the room across the hallway. She sat in my lap so I could hold her down and then his MA held her head... she did not like this at all... she screamed.

He was looking at her voicebox and when he got to it he told us that's what we were looking at and said that is was wide open and her tongue wasn't falling in the way at least while she was awake. This is good! So other than that, we scheduled another appointment for five months for to get started on his end of the surgery. As soon as the Endoscopy was over she got a bottle and was out like a light. Her appointment was at 10:15. We got there at 9:15, had her appointment, they brought us the truck and we were actually leaving the parking garage at 10:15. A much less stressful appointment.

Happy on the way there! Just smiling at here makes her smile.

The lobby of the ENT office (20th floor)

Waiting to be called back

Headed home

Just Because

Just because!

OH, how she loves her fingers and thumb when she gets it.

10 Weeks Old

Since I'm still a little disappointed about Emilee's appointment at Texas Children's on Monday, I decided that I wanted her to see an ENT for an airway evaluation. I've been talking to another mom of a PRS baby who is awesome. She gave me a bunch of habermann bottles and a bunch of formula. I'm so grateful for her. But we have been talking and she is giving me names of the doctor's that her son has been seeing for about a year and a half. So poor Miss Emilee may have a lot of appointments coming up. Not a ton, but a few. She has an appointment with the ENT down in the Medical Center on Monday, 9.28.09 and then ECI (Early Childhood Intervention) is suppose to be calling me to set up an appointment. They are basically therapist that come out to the house and do an initial evaluation and determine how she is doing as far as development. And then they will come out once a month and she'll have therapy. I think that it's a little physical therapy and speech therapy. There may be something else, but I'm not sure, we'll know soon. She automatically qualifies for the program because she has been diagnosed with PRS. So that's going to be going on. I am also working on getting an appointment with the Genetics Doc's that will look extensively into her genetics and she'll have some more blood work done to see if she has any other medical problems that can sometimes go along with the PRS. So keep us in mind.

Other than, she is growing like a weed. I weighed her tonight before she got her pj's on and she is up to 10 lbs 5.0 oz. She's doing really well on her intake amount. Much better than she has been. That was something else that was confirmed at her appointment last Monday, when we talked to the speech therapist, was that the whole time that we had been home we were using the bottle a little on the wrong side. We are working on re-training ourselves and she seems to eat faster the new way.

10 Weeks Old!

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.

Sittin' Big

I got an email saying I need to blog.... I didn't realize that it has been almost a week since my last post... SORRY! I'll try and go better. =)

This picture is from Friday. Just thought that I would share.

Two Months

Emilee had her two month well baby check up with Dr. Robinson! She weighed 9lbs 14.5oz and was 22 1/4 in long. She did really well at the visit. Chance, Granny and Emilee met me and the girls from work up at the Mexican Food Rest for lunch and then we headed to the Doctor. She slept for the first part of the visit, was happy for the exam part, and then screamed for the shots. It was long lived because she was hungry, so the screaming was cut short by the bottle. =) After they got home, she slept for most of the afternoon and evening, but woke up happy for her dinner and then went back to sleep. Overall she did great.

Sleeping peacefully before her appointment

Sleeping after her appointment, this sleep had a couple of cries included. But a great chance to just love on her all evening.

No more pictures

Is this her way of telling me to stop taking pictures of her??? Too Bad!

Fingers

She has discovered that she LOVES her fingers when she can find them and get them into her mouth. This is not something that I wanted her to get in the habit of doing, becuase unlike a pacifier you can't take her fingers away from her. But since things are the way they are, by her sucking on her fingers it's actually a good thing. She kind of does her own mouth exercises. She really only looks for her hands when she's sleepy but boy does she look hard for them.

She has her WHOLE thumb in there, sometimes when she gets just her pointer finger, she gags herself and gets mad.

Even without her fingers, she's still happy. She loves laying on her changing table, we aren't sure why, but it makes her smile everytime we lay her down on it. That of course is before I start sucking the boogers out of her nose.

I Want to go....

TO THE BEACH!!! Yes I do. The fair skin'd, no tan girl that I am wants to go to the beach. Not sure why, but I just do... so since I can't, I changed the backgroung of the blog to the beach! I'm leaving it the beach until I get to post some beach pictures.

Wedding

Chance was in a wedding on Saturday evening. Emilee didn't do all that well, she was kind of fussy, so since the wedding was outside we went inside and watched through the window. But she looked cute in her little dress.

Emilee went home with Granny Katie and we stay a little while at the reception

Trying on the Tux

Chance is in a wedding tomorrow evening and the rehearsal was tonight. Him and Daron wanted to make sure that their tuxes fit right. =) Couldn't pass up the picture. =)

First Cold

Emilee has her first cold. =(

Because of her Pierre Robin she already has a little trouble breathing and to add to it she has a cold. So needless to say it's been a really long two nights at our house. It's really heart breaking for me to lay in bed and listen to her struggle so much just to breath. Something that is suppose to be effortless is so hard for her. Wednesday night she had a fever and a runny nose, so we took her to the doctor on Thursday. The good news was that she weighed 9lbs 11.5oz and was 22 in long, on the down side she has a cold and thrush. I think the thrush is partly due to the fact that she can't completely clear all the milk from her mouth because she can't get her tongue all the way around the inside of her mouth, so I kind of thought we would get this before long. Dr. Robinson gave her two different medications and said that we could use 'ocean water' to clean her nose out. Talk about make her "oh so mad". First one I have to put on her tongue and massage it... and if that's not enough, hold her down to put the drops in her nose and then suck them back out. She is so mad by the time all that's over that she is screaming.

Thursday night we let her take her first big girl bath. We have still just been giving her spongy type baths waiting for a good night when Dad was home to try out the bath tub. She loved it. Didn't really splash around that much but just say content and started smiling. It was fun.

This was tonight before all the medicines and nose sucking. She was nice and happy and had some big yawns.

8 weeks old

Eight Weeks Old. Emilee spent the day with Daddy at home. After I got home we had some tummy time while daddy counted the money in his change jar. She's doing a lot better with picking her head up. She brings is up all the way now and holds it there. She has her two month check up next tuesday.

She looks so serious in this picture

Right after this picture she accidently rolled over onto her back. It was funny. She just laid there and looked around.

Labor Day

Daddy had to work on Labor Day so Emilee and I hung out at the house. I think that her day in CNS wore her out, because she slept all day on Monday. The only time that she was really awake was when it was time to eat. We did venture out to Matt and Renee's to visit with them and take them dinner, but other than that, she caught up on her sleep.

A day in CNS

On Sunday, Chance and I went to to Cut-N-Shoot to see Chance's family. Emilee got to see Paw, Grammy Tee, Nan, Aunt Ashley, Sam, Maw Maw, Paw Paw, Jason, Bailey, Cody and Cory. Lots of lovin' from everyone.

Emilee and Samantha

Paw and Grammy Tee's baby girls

She was getting kind of fussy when we were about to leave to come home, so Paw took her walking around the yard and ended up swinging with her in the yard for a quick nap before the drive home.

Lilah Page Francis

~Congrats to Matt and Renee~

Lilah Page Francis

09.04.09@ 5:12pm

9lbs 5oz ~ 20.5in

When Lilah was born, she weighed only four ounces less than Emilee currently does.

Granny Katie and Lilah - Lilah makes grand baby number eight

She is soooo cute...

7 Weeks Old

Miss Emilee is seven weeks old today. She weighed 9 lbs 9 oz tonight on our home scale. Still gaining weight which is great. To celebrate her week bday, we went shopping at Joann's with Granny Katie and Aunt Barbara.

All of her Aunt's just love her outfit

Working on her tummy time. She's getting much better. When she holds her head up on your shoulder she is much less 'bobbley'. Not sure that's a word, but a good description. =)