NORD Conference

Things have been a little crazy between our trip to Houston and Kenzie's hospitalization, so once again I am behind on the blog.  I'm going to try to catch up over the next few days.  Those of you who follow Kenzie on her Facebook page will know a lot of this info already, so I apologize if some is a bit repetitive.  However, you will see a lot more pictures on here!

As some of you know, we received a scholarship to attend the annual conference of the National Organization for Rare Disorders (NORD) which was held in Houston, Texas this year.  They paid for our flight, hotel, and conference fees and the meals were included on the conference days!  As you will see it was an amazing experience!

Both legs of our original flights were canceled, so we were forced to fly out the day after originally planned.

Kenzie is ready to fly for the first time since her diagnosis!  She loved watching the planes out the window.

 Kenzie figured out how to un-buckle her seat belt in about the first 5 minutes.  Kevin spent the majority of the flights trying to keep her belted in.

We FINALLY made it!  We missed the Welcome BBQ by about an hour, but we still took pictures with the cool decorations while we checked in!

Before heading back to the room for the night, we went up to the Executive Lounge for drinks and snacks.  Both girls loved the view.

Kenzie's t-shirt and name tag...

So what's with all the stripes?  Well, the zebra is the symbol of rare disease in the United States.  Why?  It all has to do with the stripes!  Just like every zebras' stripes are unique, so are the characteristics that make each individual unique.  According to NORD,while each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. 

The kids obviously had a lot of fun... while Kevin and I were off at the different sessions, the girls were busy with arts and crafts.  Kaitlyn is showing off the girls' "horses".

Kaitlyn made the panda box.  Kenzie helped make the other one. 

Various sessions were offered each hour.  Some were geared towards doctors, others toward patients themselves, and still others to caregivers.  Some of the sessions Kevin and I attended were "Relationships: Managing Marriage, Raising a Rare Child, Caring for the Other Children", "School Advocacy: Education Plans and Education Advocacy", and "Ending Isolation: Tips for Connecting and Resources for Support".  They were so helpful and we learned so much!

Checking out the booths and meeting friends...

That evening, we attended the NORD Rare Impact Awards which were held at Space Center Houston.

This was the most amazing experience!  The whole museum was open only to us while we waited for dinner!

 

Astronaut Kenneth Cameron made the opening remarks.

Mary Lou Retton was the emcee!

While all the adults were watching the awards, Space Center and NORD employees took the kids off for some fun.  They made "rockets" out of pool noodles, rubber bands, and duct tape; raced robots; etc.

These pins were our dinner favors...

 After dinner, we got to explore the museum some more.

 

They had dessert and champagne stations set up among the exhibits.  How many people can say they munched on macrons while looking at moon rocks, haha?

 

Kaitlyn with rock and soil samples from the moon...

 

 

The space shuttle on top of the Shuttle Carrier Aircraft...

Kaitlyn successfully docked the shuttle on top of the Shuttle Carrier Aircraft!

 

Kenzie is pretty happy at the farewell breakfast!

Kaitlyn got to help draw and deliver raffle prizes!

Kenzie really liked the water feature in the hotel.

 
 We had plans to stay an extra day... we figured we would not be going back to Houston anytime soon so we wanted to do an activity for each of the kids.  For Kenzie we picked Downtown Aquarium.  We also feed sting rays (well, I did... Kaitlyn wimped out), took a ride on the Shark Train, and had dinner in the aquarium restaurant.

 

Kenzie leading the Shark Train...

She loved the sharks swimming all around her!

 

 Applauding the fish and her sandwich...

Snuggled up for some quiet time...

 
The aquarium was a hit... and I finally got my picture of Kenzie in the cute hat, haha.

For Kaitlyn's activity we headed back to the Space Center. The only thing not open during the awards was the tram tour and we REALLY wanted to do that.  Unfortunately it was a bit rainy...  Kenzie, of course, loves the rain so she was having a blast.  Kaitlyn and I, of course, huddled under the ponchos we bought!

Showing off her astronaut/space shirt!

Eek... Mission Control!!!

Examples of the consoles through the years...

 This is a simulated mission... all these people are training for the real deal.  The person in the Flight Director position evaluates their performance.

The Astronaut Training Facility...

 

 
Saturn V rocket... was supposed to be used for Apollo 18 which was scrubbed due to budget cuts.

 

 

Touching a rock from Mars...

Trying out one of the simulators...

Then we got some time in the pool...

Every time Kevin asked Kenzie if she was ready to get out she signed "more".

Knowing we probably wouldn't be able to celebrate our anniversary this year, we went out for a cool dinner... a nice seafood restaurant with Creole inspired dishes.

After assuring Kaitlyn that she had eaten alligator before (and liked it) she agreed to try it again...

There were these cool see-saws on the sidewalk.  They lit up and played music as you went up and down... both girls had a blast on them!

The fountains were also a hit!

 

Pooped!

Back to the airport to head home!

We made it home around 12:30 AM Wednesday morning.  Kevin and I went to work that day, came home, did a rapid change over of suitcase/ clothes and took off for Boston (we were home for less than 24 hours) ahead of Kenzie's admittance to the hospital.

Kenzie Update June 2019

Kenzie had a busy morning at Boston Childrens meeting up with doctors... and we have somewhat of a plan and idea of how the summer is going to go. 

First up was an appointment at the gastrointestinal department followed by nutrition.  The verdict is in....Kenzie just isn't gaining weight as she should, and a feeding tube is needed at this point.  This will come in two stages.  First they will place an NG tube, which is a tube going from the nose to the stomach.  This will be in place for a month or more to see how she tolerates it, and how it goes.  This will be done in Boston as an inpatient procedure, and Kenzie will be hospitalized for up to a week.  Most likely this will happen within the next month, but we will let you all know when we get the date.  The hospitalization is necessary so they can monitor Kenzie and her levels...to ensure it is working properly and that she tolerates it.  If this goes well and she does well with it, a month or so later she will be admitted for surgery for placement of an actual G tube , which is placed in the abdomen.  This too would require about a week or so hospitalization for Kenzie.  Needless to say this is all happening very fast and we have some arrangements to make and things to figure out to make the back and forth to Boston work as a family. Somewhat of a logistical nightmare on all levels.

Kenzies other appointment of the day was with her orthopedic doctor.  As we all know, Kenzies hamstrings are super tight, and her knee flexion is bad.  Kenzie is in need of botox and phenol injections again, earlier than last time.  So instead of waiting until the fall, Kenzie will be scheduled to receive the injections before September.  We don't have a date for this yet either, but it could possibly be done at the same time her feeding tube is placed. 

So a lot of info to be had today, but one step at a time.  As we get more information and actual dates for procedures, we will certainly keep everyone updated.  Keep the positive vibes and prayers coming!!!

Touch-A-Truck

We took the girls to Touch-A-Truck today.  This has become a yearly tradition for us.  This year Kenzie was very into it!  She has become so much more interactive with her surroundings since she got her chair!  The muddy field made for a bit of a challenge, but we still had a great time!

 Checking out the school bus...

 On the Excavator...

Hanging out in the SWAT vehicle...

Kaitlyn thought the vest was big and heavy, hahaha,  Meanwhile, my coworkers will never see these photos or I will never hear the end of it!   (It's hard to read, but that's Customs and Border Patrol)

Marine Patrol...

Kenzie loved when he hit the siren for her and pointed for him to do it again!

Angel One (the private critical care ambulance for Barbara Bush).  God willing we will never have to be transported in this!

There's a TV above the door playing cartoons- obviously that's more interesting than taking yet another picture!

The front seat of Angel One

The Hannaford produce truck

Kenzie's favorite... the fire truck!