For those that don't know, we found out about this amazing Rett Clinic that was doing some really cool things that we just had to be a part of. The bad new is that it is located in the Bronx, NY. Luckily we happen to love NY so this actually came as a perk to us. So we started our adventure on Wednesday after work. We picked up the girls, packed the car and headed to the airport . . . . . to El Paso. Why, you ask would we head to El Paso to go to New York? Well the answer is the wonderful airlines. It actually cost over $200 more per ticket to head to NY from DFW airport than from El Paso International. So, since Omi would be joining us anyway, we decided to fly into El Paso for dinner and then head out Thursday morning.
Here is my little traveler carrying her own carry-on. At this point she was very excited and happy to be getting on an airplane.
And yes, we are those people. We had four people and 8 carry-on items. We were not about the pay a fee to check them in!
Here is Juliana waiting to board sipping on some iced coffee. Just kidding!
Here is Olivia very excited in her window seat! Too bad that by the time we left it was dark and she couldn't see much. But she did give the engine more power by patting her hands on her lap and saying "pat, pat, pat, pat" (Little Einstein's reference)
And look how excited Juliana was!!!! We had been talking to her about this trip for some time and let me tell you this is how she woke up that morning and how she looked until bedtime. She knew where we were going and she was super excited!
This is how Livi travels; complete with her disc jockey head phones and a cocktail:)
I tried to cut her off, but she insisted - ok, I'm kidding. I'm not giving her scotch on the rocks! It is apple juice!
So, once we made it into El Paso we headed directly to Monteleone's to celebrate my older brother's birthday. These are his sons Nicolas & Phillip. Can't believe how old they are!
Here are my cousin Lilia, my aunt Carmela and Omi - and of course the ghosts again.
So from there we went home and straight to bed. We had a 6 am flight the next morning (going back to Dallas to catch our flight to NY-so stupid) So, everything is running like clock work, we get up, ready, pack the car when all of a sudden Olivia explodes out of her mouth the most disgusting vomit ever! She HATES to throw up as much as I do so she was rather upset. So we give her and the house a good cleaning and for the airport. About a quarter of a mile to the airport the explosion happens again - all over myself, Olivia and Omi. So we manage to change Olivia but Omi and I have no time, so we clean as best we can before heading back on another plane. Roger sat with Juliana and Omi and I sat with a very sick and sad Olivia - yes in our throw up clothes.
Here I am trying to be positive but Livi was just not up for a picture.
I have no more pictures from the airplane, but here is how it went down. The first flight to Dallas went unremarkable. Livi slept most the way and Juliana was fine. So we get to Dallas and poor Olivia is begging for juice. Her lips are dry and she is pleading for a little sip. So we give her just a tiny bit of apple juice to see how it would settle and it seemed ok. So she talked us into letting her drink the rest. So as we are boarding Roger asks me to switch partners (I ride with Juliana and he rides with Olivia) Ok. About 20 minutes after leaving Dallas, you guessed it, explosion number 3! All over Roger and Olivia. So I had to unpack our carry ons to get Olivia clothes and change her in a bathroom that had the area of 1 square inch - all the while trying not to touch the soaking wet clothes as I pull them over her head, and as she is crying. So the stewardess gets us some blankets to lay over the soaking wet seat where we will have to sit for the remaining 2 and a half hours. Good times. The othere weird thing is that everytime she threw up, she developed a hive like rash on her face, back and arms.
I tried to cut her off, but she insisted - ok, I'm kidding. I'm not giving her scotch on the rocks! It is apple juice!
So, once we made it into El Paso we headed directly to Monteleone's to celebrate my older brother's birthday. These are his sons Nicolas & Phillip. Can't believe how old they are!Here is Opi and the birthday boy - Eddie! And apparently orbs from the ghosts in the restaurant.
Here are my cousin Lilia, my aunt Carmela and Omi - and of course the ghosts again.So from there we went home and straight to bed. We had a 6 am flight the next morning (going back to Dallas to catch our flight to NY-so stupid) So, everything is running like clock work, we get up, ready, pack the car when all of a sudden Olivia explodes out of her mouth the most disgusting vomit ever! She HATES to throw up as much as I do so she was rather upset. So we give her and the house a good cleaning and for the airport. About a quarter of a mile to the airport the explosion happens again - all over myself, Olivia and Omi. So we manage to change Olivia but Omi and I have no time, so we clean as best we can before heading back on another plane. Roger sat with Juliana and Omi and I sat with a very sick and sad Olivia - yes in our throw up clothes.
Here I am trying to be positive but Livi was just not up for a picture.
I have no more pictures from the airplane, but here is how it went down. The first flight to Dallas went unremarkable. Livi slept most the way and Juliana was fine. So we get to Dallas and poor Olivia is begging for juice. Her lips are dry and she is pleading for a little sip. So we give her just a tiny bit of apple juice to see how it would settle and it seemed ok. So she talked us into letting her drink the rest. So as we are boarding Roger asks me to switch partners (I ride with Juliana and he rides with Olivia) Ok. About 20 minutes after leaving Dallas, you guessed it, explosion number 3! All over Roger and Olivia. So I had to unpack our carry ons to get Olivia clothes and change her in a bathroom that had the area of 1 square inch - all the while trying not to touch the soaking wet clothes as I pull them over her head, and as she is crying. So the stewardess gets us some blankets to lay over the soaking wet seat where we will have to sit for the remaining 2 and a half hours. Good times. The othere weird thing is that everytime she threw up, she developed a hive like rash on her face, back and arms. So we finally make it in and are picked up by an excellent driver that ended up being our driver for the entire time we were there. His name is Rick and he is awesome. I have his number if you ever need a ride in the city! So, back to the story. We got there, stopped at the store for some Gatorade and benadryl and checked in the hotel. After vegging for awhile we got hungry and our driver took us to a tasty diner called Neptune Cafe. We were all starving but Olivia unfortunately slept through almost the entire dinner.
Thankfully Juliana remained un-phased by all the drama. She was still so excited to be in NYC! (and her grilled cheese sandwich was to die for!)
And this is Juliana after sharing a chocolate cake with daddy. She was in heaven!
So five minutes before we were going to leave, guess who wakes up? You guessed it, Olivia. And yes, she was STARVING. So we ordered her some plain mashed potatoes to which she added ketchup (gross). She gobbled them up and THANKS TO GOD - they stayed down! And that fortunately ended the 12 hour stomach bug that Olivia took to NY.
Thankfully Juliana remained un-phased by all the drama. She was still so excited to be in NYC! (and her grilled cheese sandwich was to die for!)
And this is Juliana after sharing a chocolate cake with daddy. She was in heaven!
So five minutes before we were going to leave, guess who wakes up? You guessed it, Olivia. And yes, she was STARVING. So we ordered her some plain mashed potatoes to which she added ketchup (gross). She gobbled them up and THANKS TO GOD - they stayed down! And that fortunately ended the 12 hour stomach bug that Olivia took to NY.So bright and early the next morning we started our day of appointments! First stop was Dr. Abraham, who is the Associate Professor of Clinical Otorhinolaryngology/Voice and Swallow. She did a swallow study to examine the way Juliana swallows and handles different foods and different thicknesses of liqiuds. She was actually off on Friday and came in just for Juliana! And look at Juliana's smile even after she ate and swallowed barium. That girl is a trooper!
Then we met with Dr. Rani who is the Associate Professor of Clinical Physical Medicine & Rehabilitation, Dr. Loizides who is the G.I. and Nutrition doctor and Dr. Bent who is the Ear, Nose and Throat guy -all just as amazing but we forgot to take out the camera. I guess we were just taking in so much information that we forgot the camera.
Then we met with Dr. Rani who is the Associate Professor of Clinical Physical Medicine & Rehabilitation, Dr. Loizides who is the G.I. and Nutrition doctor and Dr. Bent who is the Ear, Nose and Throat guy -all just as amazing but we forgot to take out the camera. I guess we were just taking in so much information that we forgot the camera. And this is Dr. Djukic who is the pediatric neurologist and the director of the Rett Clinic. She is an amazing doctor and person and she has so much passion for finding a cure for these girls. You can't imagine how it feels to have a doctor say, "We are here for Juliana and we are running on her time. So if she needs a break or a snack we will rework our schedules around her!" I mean, come on, we have been used to waiting up to an hour and half some times with no apologies or concerns about what Juliana needs. We instantly felt like family there and it just made us know we were in the right place.
Dr. Djukic has eye gaze computers in her office. (click link and read the article about eye gaze) I have always known that I wanted one for Juliana but always kind of thought that she was too young. Let me back track, for those that don't know, one of many horrible things about Rett Syndrome is that the girls lose any purposeful hand use. So, in terms of communicating it is unrealistic to rely on her hands to push buttons and also very limiting in regards to quality of communication she would have (basically limited to yes and no questions). The eye gaze computer tracks her eyes and allows her to make choices, answer questions and eventually type just by tracking her eyes. So Dr. Djukic calibrated the computer with her eyes and started a very simple program that flashed different images and Juliana was absolutely able to manipulate the program with ease! You cannot imagine the emotions that rushed over me. We ALWAYS knew that Juliana was in there and that she was understanding everything we were saying, but to get concrete evidence of it was just so validating. We of course are definitely starting the journey to get an eye gaze computer for Juliana. It is of course rather costly, but you definitely cannot put a price on Juliana's voice.
So after a full day at Montefiore, we had the pleasure of meeting another Rett Family that lives in the city. To say we were a little hungry was a complete understatement. We just never made time to eat during the day. So we got to the restaurant a little early and ordered for the girls. Here is Olivia enjoying a yummy grilled cheese!
And here is Omi stealing a bite from Olivia.
And here is Daddy caught with a mouthful of Livi's grilled cheese.
And once again, we forgot to take out the camera, so as they were leaving I had Roger chase them down to get some pictures of our new friends. This is Anna and she is an absolute doll. She let Roger and I both hold her and has the cutest little giggle.
This is Anna's handsome brother Gabe. So cute.
And this is Stephanie and Manny. Thank you guys so much for all your help. We enjoyed dinner so much and hope to see you again soon! There is absolutely an instant bond that forms with other Rett parents. No one understands the day to day like other parents. Hope to keep in close touch with them!
Saturday we slept in a little and then walked to a local coffee shop for lunch. Omi, Roger and I had an Italian sandwich called "The Godfather" and Juliana and Olivia had pancakes, Olivia's of course with ketchup. (Gross - I'm hoping this ketchup phase comes to an end soon).
Dr. Djukic has eye gaze computers in her office. (click link and read the article about eye gaze) I have always known that I wanted one for Juliana but always kind of thought that she was too young. Let me back track, for those that don't know, one of many horrible things about Rett Syndrome is that the girls lose any purposeful hand use. So, in terms of communicating it is unrealistic to rely on her hands to push buttons and also very limiting in regards to quality of communication she would have (basically limited to yes and no questions). The eye gaze computer tracks her eyes and allows her to make choices, answer questions and eventually type just by tracking her eyes. So Dr. Djukic calibrated the computer with her eyes and started a very simple program that flashed different images and Juliana was absolutely able to manipulate the program with ease! You cannot imagine the emotions that rushed over me. We ALWAYS knew that Juliana was in there and that she was understanding everything we were saying, but to get concrete evidence of it was just so validating. We of course are definitely starting the journey to get an eye gaze computer for Juliana. It is of course rather costly, but you definitely cannot put a price on Juliana's voice.And then to hear Dr. Djukic say that she is certain we will see a cure in her lifetime. WOW!!!! Again, we have always believed that a cure is on the way, but sometimes, when you have a bad day, you start to let the doubt in and start to wonder, "Is a cure really near, or is that just what I have to tell myself to make it through the day?" No, it's true! A cure is near! I feel like it really renewed our faith.
I think Juliana was really fond of her new doctor. I know we were!
So after a full day at Montefiore, we had the pleasure of meeting another Rett Family that lives in the city. To say we were a little hungry was a complete understatement. We just never made time to eat during the day. So we got to the restaurant a little early and ordered for the girls. Here is Olivia enjoying a yummy grilled cheese!
And here is Omi stealing a bite from Olivia.
And here is Daddy caught with a mouthful of Livi's grilled cheese.
And once again, we forgot to take out the camera, so as they were leaving I had Roger chase them down to get some pictures of our new friends. This is Anna and she is an absolute doll. She let Roger and I both hold her and has the cutest little giggle.
This is Anna's handsome brother Gabe. So cute.
And this is Stephanie and Manny. Thank you guys so much for all your help. We enjoyed dinner so much and hope to see you again soon! There is absolutely an instant bond that forms with other Rett parents. No one understands the day to day like other parents. Hope to keep in close touch with them!
Saturday we slept in a little and then walked to a local coffee shop for lunch. Omi, Roger and I had an Italian sandwich called "The Godfather" and Juliana and Olivia had pancakes, Olivia's of course with ketchup. (Gross - I'm hoping this ketchup phase comes to an end soon).Omi and Olivia in front of a house by our hotel in Queens.
The church in front of our hotel.
After lunch we called the driver and headed into the city. Although no one shared my excitement, I was thrilled when we passed the Parson's School of Design from Project Runway! It was so cool. I would have killed to have Tim Gunn say "Make it work!"
Just cool NY streets
This was one of many "Livi Melt Downs". I have to say, for the most part she did great. I mean she is only 2. But what I have learned from this trip is that she is a bit of a home body. I didn't realize she would be so home sick.
This was a little "square" we found. The name escapes me at the moment but it was really nice. The weather was amazing. We had no use for all of the parkas and long underwear we brought.
One of the many street performers. He was making this cool design with colored sand using only his hands.
Fountain in the square.
Just a cool twisted root of a tree that adorned this house.
So then we met up with my college roommate and her family whom I hadn't seen in 10 years - since my wedding and before she was married and had a baby girl. She lives in Newark and recommended a burger join in the city (boy does she know us). I think it was called The Stand or something like that. But what was even more delicious than the hamburger were these incredible devils known as A TOASTED MARSHMALLOW SHAKE. I can't even describe how incredible this tasted. It was like heaven in your mouth. I have been dreaming of this devil every day since we had it. Apparently it was featured on some food network show. So worth it - if you are in the city FIND IT!!!!
The church in front of our hotel.
After lunch we called the driver and headed into the city. Although no one shared my excitement, I was thrilled when we passed the Parson's School of Design from Project Runway! It was so cool. I would have killed to have Tim Gunn say "Make it work!"
Just cool NY streets
This was one of many "Livi Melt Downs". I have to say, for the most part she did great. I mean she is only 2. But what I have learned from this trip is that she is a bit of a home body. I didn't realize she would be so home sick.
This was a little "square" we found. The name escapes me at the moment but it was really nice. The weather was amazing. We had no use for all of the parkas and long underwear we brought.
One of the many street performers. He was making this cool design with colored sand using only his hands.
Fountain in the square.
Just a cool twisted root of a tree that adorned this house.
So then we met up with my college roommate and her family whom I hadn't seen in 10 years - since my wedding and before she was married and had a baby girl. She lives in Newark and recommended a burger join in the city (boy does she know us). I think it was called The Stand or something like that. But what was even more delicious than the hamburger were these incredible devils known as A TOASTED MARSHMALLOW SHAKE. I can't even describe how incredible this tasted. It was like heaven in your mouth. I have been dreaming of this devil every day since we had it. Apparently it was featured on some food network show. So worth it - if you are in the city FIND IT!!!!I think Olivia loved it too! She would be eating the actual toasted marshmallow that adorned the glass.
Yes, Omi had one too!
This is Gina's husband Rob and her adorable daughter Gia - who we thoroughly enjoyed meeting. It is so much fun to catch up with your roomies!
This is me & Gina - God I miss her! We had some great times!
So cool to see our girls together.
Then after dinner it was off to see the Rockette's at Radio City Music Hall. Rob was kind enough to drive us there. Thanks Rob!
This was the best smile Liv could muster up by this hour. I tell you, she's a trooper for 2 years old:)
Juliana at this point was a little tired. She managed a little cat nap before the show.
You have to know that I have been wanting to go to this show since 1999 when we lived in New Jersey! I was just a tad excited!!!!!
Inside the Music Hall.
A happy Juliana and daddy waiting for the show to start!
Very excited Livi. I was so impressed with her. She actually connected this show with her dance recital in August. She actually asked during the performance "Mommy are they doing step shuffle?" I guess we got our money's worth in those dance classes.
And yes, in my mom's hands you will see 3d glasses. They actually incorporated a 3d portion of the show. It was sooooooo cool!
My mom with her program. Frankly I thought $20 was too much for a program so we just looked at Omi's book. Thanks Omi.
Loving the show.
Half way during the show Juliana went into a bit of an anxiety fit. She was scratching, rubbing her face and just plain irritated. Then finally I guess daddy's magic kicked in and she calmed down again.
As the curtains were about to open. . . .
So after a spectacular show our driver was waiting to take us home. We all had so much fun but our New York adventure was slowly coming to an end:(
We stopped to take a few last pictures and for some strange reason, my camera wouldn't work right. I think I accidentally had it on the wrong setting. So hear is a blurry version of us in front a wonderful skyline.
Ok and this was totally freaky. So I kept messing with camera to try to get it to work. I didn't even notice at the time, but how did I manage to have the Texas outline covering my New York City picture? Weird!!!!!
Back at our hotel, getting ready to pack and head home.
A few last images as we were leaving. I have to say, as cliche as it sounds, I LOVE NY!
My home body - READY TO BE HOME!
So when we landed our friend Julie was there to pick us up. Before heading home we went straight to Steak and Shake for lunch where Olivia and I shared a milk shake! A great ending to a great trip! See you soon New York and Montefiore Children's Hospital!
Yes, Omi had one too!
This is Gina's husband Rob and her adorable daughter Gia - who we thoroughly enjoyed meeting. It is so much fun to catch up with your roomies!
This is me & Gina - God I miss her! We had some great times!
So cool to see our girls together.
Then after dinner it was off to see the Rockette's at Radio City Music Hall. Rob was kind enough to drive us there. Thanks Rob!
This was the best smile Liv could muster up by this hour. I tell you, she's a trooper for 2 years old:)
Juliana at this point was a little tired. She managed a little cat nap before the show.
You have to know that I have been wanting to go to this show since 1999 when we lived in New Jersey! I was just a tad excited!!!!!
Inside the Music Hall.
A happy Juliana and daddy waiting for the show to start!
Very excited Livi. I was so impressed with her. She actually connected this show with her dance recital in August. She actually asked during the performance "Mommy are they doing step shuffle?" I guess we got our money's worth in those dance classes.
And yes, in my mom's hands you will see 3d glasses. They actually incorporated a 3d portion of the show. It was sooooooo cool!
My mom with her program. Frankly I thought $20 was too much for a program so we just looked at Omi's book. Thanks Omi.
Loving the show.
Half way during the show Juliana went into a bit of an anxiety fit. She was scratching, rubbing her face and just plain irritated. Then finally I guess daddy's magic kicked in and she calmed down again.
As the curtains were about to open. . . .
So after a spectacular show our driver was waiting to take us home. We all had so much fun but our New York adventure was slowly coming to an end:(
We stopped to take a few last pictures and for some strange reason, my camera wouldn't work right. I think I accidentally had it on the wrong setting. So hear is a blurry version of us in front a wonderful skyline.
Ok and this was totally freaky. So I kept messing with camera to try to get it to work. I didn't even notice at the time, but how did I manage to have the Texas outline covering my New York City picture? Weird!!!!!Back at our hotel, getting ready to pack and head home. A few last images as we were leaving. I have to say, as cliche as it sounds, I LOVE NY!
My home body - READY TO BE HOME!
So when we landed our friend Julie was there to pick us up. Before heading home we went straight to Steak and Shake for lunch where Olivia and I shared a milk shake! A great ending to a great trip! See you soon New York and Montefiore Children's Hospital!
Wow - Olivia looks real impressed by Boris!
