Tuesday, January 27, 2015

Thank you Hyatt Regency Cambridge

This is a long overdue THANK YOU to the amazing Hyatt family.  

Our daughter has a rare neurological disorder called Rett syndrome.  It affects just about everything.  Rett has robbed her of the abilities to walk, talk and use her hands.  But she understands everything, she is very smart.  She communicates with her eyes.  She is almost 6 and has yet to walk independently or utter a word. She is wheelchair bound and depends on us for everything from feeding, drinking, changing, sitting on the potty, wiping away an eyelash, and everything in between.  

Last summer, Cammy began the IGF-1 clinical trial in Boston.  We knew this was going to be a big emotional, physical, financial stress on our family, but we are determined to give our daughter the best future possible.  Over a year and a half, we would travel from Wheaton, IL to Boston 6 times for a total of 60 days.  Leaving our home and comforts for so long for tests, appointments and injections was daunting.  


We gained a new family and a home away from home when we began our travels.  The Hyatt Cambridge has gone above and beyond to make sure we felt at home.  They have made us feel like family and have treated Cammy like a princess.  

Ivan was the first one we met as he checked us in.  He made certain we had all the accommodations in our room we needed for that first long 12 day stay.  Throughout each stay, Cammy has had desserts sent up to her compliments of the staff.  Ivan has gone out of his way to make sure we knew where were were going each day.  Each trip, he is eager to hear from us a few days early to make sure he has our room set up. 

 We next met Maria at breakfast and she immediately recognized we would need some extra assistance.  She let us into the restaurant before it opened to let Cammy watch her Sesame Street at a table and give me a much needed cup of coffee at 6am.  

While the breakfast staff was getting the buffet all set up, Ricky came over and introduced himself.  I think Cammy fell in love with his big smile and gentle teddy bear approach.  He was soon making Cammy special Mickey Mouse pancakes and fruit smoothies each morning.  He has sent Cammy up desserts every time we visit to make her feel special (and to help her gain some weight).   Our 4 year old, Ryan, asks when we are going to back Boston to see Ricky all the time. 

 Andres charmed his way into Cammy's heart very quickly.  He calls her "princess" every time he sees her.  He is ready with her milk and juice before we are even at our table. He asks about my sister and twin nieces who came with on the very first visit.  He remembers everything.  He's shared about his family and we are so grateful for that. 


 On the second trip we met Al.  Ricky thinks he's trying to steal his thunder :)  Cammy lights up with she sees Al's big smile.  He's eager to get Cammy's breakfast perfect each time and make sure it has fruit for good nutrition.  Billy likes to talk food with Al.  We're going to bring him from Chicago beef with giardiniera on our next trip since they've never had it.  Whether it's because Al's wife is a special needs teacher or because it comes so naturally, he is absolutely amazing with Cammy.  

Each day, we seem to see Kerolyn taking on a different role.  One day she'll check us in, the next she's driving the shuttle.  She always has a smile on her face.  She always wants to know where we are headed or if we need any help.  When we asked about the bus and sub system, she gave us her Charlie card with money on it and showed us how to navigate the city. 
Roger loves to give Cammy high 5s.  He's always so sweet when we see him. He's ready with her milk as we sit down.  

During our extended 10 day stays, we obviously need to do laundry.  The laundromat is a mile away.  As I was ready to take a cab there, Lena was off-duty, waiting for her ride.  She asked where I was going and gave me a ride there and back.  She didn't have to do this on her off time.  But she did so out of the kindness of her big heart.  

Arturo captured our hearts this last visit.  The first night of our most recent stay, he delivered some "welcome back" goodies.  He smiled and told us that he had a sister with the same condition.  I assumed he just meant that he had a sister in a wheelchair.  He kept smiling at Cammy with tears in her eyes saying how Cammy's mannerisms were exactly like his sister's.  He said Cammy was bringing back such memories of his sister.  His sister did have Rett syndrome too!  They were a very large family from Italy.  It melted my heart to hear Arturo share about his family, about his mother caring for his sister who passes away at 46.  Living with Rett until 46 gave me such hope.  Arturo visited us a couple more times throughout our stay, providing us with great inspiration. 

Pat made it his mission to get us to our appointments on time and put Cammy to sleep on the way.  Cammy does not sleep well to begin with, but in a hotel, it's even worse.  However, each time we were in Pat's shuttle, Cammy would immediately fall asleep. 

Last but certainly not least, Kelly, we cannot thank you for all that you have done for us to make this possible. Our visits have truly felt like a home away from home.

There are so many more members of the Hyatt Cambridge staff who have made us feel comfortable.  Over our winter visit, the front desk had a mini Christmas tree and decorations set up in our room to make us feel like home right before Christmas.  Each and every member treated us like family and treated Cammy like a princess.  This is the only place we will stay in Boston.  

I think the most important thing I have been impressed with is that each and every staff member knew exactly how to speak with Cammy when they met her.  This is not something that is innate to people.  It is rare to see a nonverbal little girl in a wheelchair unable to use her hands to communicate.  Each and every one of them, squatted down to her eye level and spoke to her like any other child.  They looked into her eyes for her response. They just knew.  

Thank you Hyatt Cambridge, from the bottom of our hearts.
To learn more about Cammy and life with Rett syndrome:

Jackie, Billy Cammy and Ryan Babiarz

Monday, January 12, 2015

Dec 23, 2014: Final blood draw and check up with Dr. K in 2014

Cammy had to fast this morning.  We had to get to the hospital by 8.  We were waiting out front for the bus when Pat pulled the shuttle up to take us to the hospital.  We are so lucky to have Pat.  He's taken it upon himself to be Cammy's personal chauffeur this trip.  He's prided himself in making her fall asleep each time he drives her.  

At the hospital, they gave Cammy numbing cream right away for the blood draw.  While they were waiting for it to kick in, they took all her vital and measurements.  

The blood draw was a piece of cake for Cammy.  She didn't even flinch.  This nurse stuck her right the first time.  What a relief!  Cammy was so excited to eat once it was over.  She gobbled down her peanut butter and jelly and cannoli.  This kid can't get enough of cannolis.  

Dr Kauffman came in and greeted Cammy with a big hug first, then us.  He gave us updates about the trial and process of the trial.  We love him so much.  He truly loves all our girls.  He is always so grateful to all the families in the study for being in the study.  

We said our goodbyes to Dr. Kauffman, Grace and the others involved in the study.  We were all so excited that we finished an hour ahead of schedule.  We were able to check out the new interactive parts of the hospital like the musical staircase and the Ryan Seacrest Studio.  

Back at the hotel, we grabbed lunch, rested for an hour and finished packing up our things 
We said our final goodbyes to the staff and headed to the airport.  Cammy always has a big proud smile on her face when we take a taxi or shuttle because she sits with a regular seatbelt on like a big girl.  

We flew through security at the airport with an airport assistant guiding us.  It's so helpful to ask for assistance.  We bypassed all lines with Cammy's wheelchair.  It was also so nice not to have medication and needles with us. Having to show security the doctor's note and have it all inspected slows us down.

Our flight was on time.  We has pre-boarding again and choose row 2 this time.  It was so much better.  Previously, with the first row, I had to hold Cammy's iPad the entire flight.  There was no under the seat storage, so that was a pain for me with all the stuff Cammy needs.  Row 2 is he way to go.  This was Billy's first time flying with Cammy.  He stepped in like the pro he is.  Cammy was all smiles throughout the flight.  She's an incredible traveler.

We landed to a bummer of a text from grandpa B, saying that our van battery was dead.  We didn't want to wait for roadside assistance to jump the van then grandpa B drive 45 minutes to the airport.  we just wanted to get home.  So we took a cab.  Ryan ran out the door to my screaming "mommy" when she saw me.  I started to cry.  It was the best welcome.  I missed that little peanut so much. 
Cammy was out cold when we got home.  She was an easy transfer to her bed.  After hearing all about Ryan's time at home, school, and grandma's, I tucked her in and was in bed by 8:30.  I know I could sleep for days, but will be up at 4:30am with Cammy tomorrow.  I'm so happy that Billy took Christmas Eve off because I'm going to be a zombie.  Cammy and I survived another 10 days in Boston.

Goodnight Wheaton. 

Dec 22, 2014: Final injection of 2014

After Al made Cammy another amazing pancake breakfast with a smoothie, we made sure we said goodbye to all our favorite Hyatt friends in case we didn't see them Tuesday before we left.  It means the world to us that they tram us like family.  They tell us about their own families as they have learned so much about ours.  Although we are excited to go home, we are sad to say goodbye to our friends.  Thank you Ivan, Ricky, Al, Andres, Arturo, Roger, Maria, Pat, Kerolyn, Lina and many others for your kindness.  You go above and beyond to make us feel like this is our home away from home.


Cammy had her final autonomic testing of this trip.  Cammy was extra smiley during this testing.  I think it was because she knew it was the last one of the trip and final morning injection of 2014.  I had to do my part of the study answer an hour's worth of questions during this time as well.  

We said our goodbyes to Natalie and Heather.  We will see Grace tomorrow. 
After lunch , Cammy and Billy went for a final swim while I packed up our room. 
We ordered Bertucci's pizza and enjoyed it by the fire on the 3rd floor.  Cammy polished off another Mike's cannoli of the trip. 
Since Billy gave Cammy her first injection back in August, we thought he should give her the final injection of this 20 week period.  As usual, Cammy slept right through it.

Goodnight Boston

Dec 20-21, 2014: Weekend in Boston

At breakfast, Cammy ate her entire plate of pancakes with real whipped cream, syrup, 1/2 banana and a few strawberries.  She's going to be pretty disappointed when we get back home and it's instant oatmeal and frozen pancakes during the week before school again.  She's getting the royal treatment here.  They are even calling her "princess."  

Cammy and Billy went for a swim.  We are so lucky the Hyatt has a gigantic pool for Cammy to swim in almost every day we are here.  She loves it so much and it's so good for her.
I don't know if it was from the gigantic breakfast or being here a week finally caught up to her, but Cammy was finally took a good nap.  We woke her up to go to the North End and she fell asleep again as soon as we got on the T.  

It's very difficult to find a place to eat in the North End with a wheelchair.  it seems like a mountain when we are looking at restaurants with 3 steps to the entrance. Most places have steps, very narrow aisles or tight seating.  We finally found a place.  Cammy slept straight through our late lunch, which was actually nice for Billy and I to enjoy a meal with it taking extra long to feed Cammy.  

As exhausted as Cammy was, she woke up immediately once we walked into of Mike's.  She absolutely loves cannolis, which we discovered on our very first trip to Boston in July.  Oreo is her favorite.  We each got two to have over the next four days.  Cammy picked oreo and chocolate chip. Billy picked expresso and pistachio.  I chose expresso and mint chip. 
We bundled Cammy back up and headed out to find the skating rink and Christmas lights. On the way, Cammy was finally hungry again, so we stopped in Dunkin Donuts for a chocolate glazed donut for her.  She loves anything chocolate nowadays.
The park was lit up so beautifully.  The line was extremely long for ice skating.  We weren't planning on skating that evening, as we heard that Kendall Square has an outdoor rink which is less crowded.  So we planned to do that Sunday afternoon.  

When we got back to the hotel, Cammy had the lasagna with short ribs I ordered from the restaurant.  We call her 'Garfield' because she loves lasagna so much.  She showed her the box of Mike's.  Her little hand reached in the box for one.  We asked her which cannoli she wanted.  She choose oreo immediately.  She smacks her lips, grins, giggles and kicks her legs with excitement with each bite. 

Since she napped for so long, we were worried she wouldn't sleep at night, so we went down to the lobby bar.  Cammy had her princess bottle full of juice, I had my diet coke and Billy had a Manhattan.  We joked around "3 Babiarzes walk into a bar, 2 need to be rolled out."

We Skyped with Ryan.  She was cracking us up.  We all miss her so much. We play a game where we say "i love you to (insert place)" and go back and forth laughing at each other's creativity.  This evening, I told her "i love you to the moon."  She replied "I love you to the sun."  I told her "Cammy says 'I love you Boston.'"  Ryan replied "I love Cammy to Wheaton."  Billy said "I love you to Jefferson Preschool."  Ryan replied "I love you to White Castle."  Ryan wins. 
Goodnight Boston

Lazy Sunday
Cammy had another enormous breakfast, then went for another swim. 
After lunch we headed out to Kendall Square to go ice skating.  We were excited to see how small the rink was and that it wasn't too crowded.  Our excitement quickly turned to sadness and disappointment as we were told that wheelchairs were not allowed on the ice.  Some things are worth fighting about and some things are not.  I know some rinks around us at home don't allow wheelchairs for safety reason and liability. 
So we walked over the Legal Seafood for an early dinner.  Cammy tried clam chowder for the first time.  She wasn't crazy about it.  

When we got back to our room, Cammy thrilled to eat another cannoli. 
Goodnight Boston 

Dec. 19, 2014: BU vs USA Junior World Hockey

Cammy and I had a relaxing swim in the morning.  We both actually took an hour long nap.  We were both very excited to see Billy tonight.

Since we were unable to go to a Bruins game, we got tickets to a BU hockey game.  They were playing the USA Junior World team. 

We did not know who to cheer for until we saw what BU's mascot's name was.  
Boooooo Rhett! Let's go USA!

The handicap accessible seating was really cool.  
It was right above a goal.  

It was a fun night.  We are all so happy to be together again.  We miss Ryan so much though.
Goodnight Boston.