Saturday, October 27, 2012

Costumes, Cupcakes and Carving

This year I was floored that both of my little princesses wanted to be witches.  And not the cute frilly witches, they wanted full on green face with warts!  As much as it shocked me, I also loved it!  Juliana had a dress up day the Friday before Halloween at school.  It had to be a book character of course.  So I kind of forgot until the Wednesday before the dress up, so I asked her if she would possibly consider going at Minnie Mouse to school since we already had that costume and we have plenty of Minnie books.  She looked at her computer and said "NO!".  I pleaded with her, "come on, we have no witch costume or witch book.  You can still be a witch for Halloween, just be Minnie at school."  To which she responded "NO!"  So I said, "Ok, we will figure this out.  I will find a costume and a book"  Then, in sweet and selfless Juliana style, she responded with her computer, "I'm sorry, I was just kidding.  I'm sorry."  To which I said, "NO!  I am glad that you are telling me you want to be a witch and I am going to make it happen." 

This is her on that Friday.  She was so excited with her costume.  I was a little nervous about the face painting, especially since when I dropped her off no one else had their face painted, but she was so excited.  They had a costume parade, which Juliana the witch was the leader of!  Unfortunately I didn't get to see it because I was at jury duty that week, but I was told she was nothing but smiles and giggles that day.

 Then that weekend we had our annual pumpkin carving party.  Here is Juliana making cupcakes with Ashley.  Do you think she likes cupcakes!!!
 And here is Liv at the Pumpkin Party.  She makes one spooky witch!
 Here is Emma - our favorite little elephant
 And Tanner, the best Mailman EVER!!!!              
 For those of you that know, this was our 9th Annual Pumpkin Carving Competition.  And 9 years ago, it truly was a Super Competitive Event.  We would have anywhere from 9-15 pumpkins entered in the competition and everyone fought to win the coveted Golden Pumpkin Award.  It remained this way for about the first 4-5 years of the competition.  But it's changed now.  What had changed is that we are old and we have children.  So what started off as a fight-to-the-death type of competition ended this year with 3 pumpkins entered and one not finished.  We spend way more time playing with the kids and baby and very few time carving or judging.  So here are the awards from this years' competition:
The Award for a Hot Mess of an Unfinished Pumpkin goes to  . . . . . . . . . . . Chuy Loucks
 Clint won the Golden Pumpkin and Ashley won the Golden Kitty Award.  Unfortunatley we didn't even take a single picture of the actual pumpkins, but trust me on this one, they were the winners!
 The Award for the Cutest Mailman Ever goes to . . . . . . Tanner
 And one last shot of Elphaba the witch!

Sunday, October 14, 2012

One Last Stop

And we couldn't leave without seeing the Gutierrez family.  They will always hold a special place in our hearts.  Love you guys and hope you will make it to Texas sometime!
 And on the way back Liv and Omi decided they wanted a picture with a street vendor.  Well, by the looks on their faces I think Omi wanted it more than Liv.
 But Liv was up for a picture with the Statue of Liberty.  My concern is that since we never got to see the real one, I think she thinks this is the real deal.  She told everyone when she got home she saw Lady Liberty.
And from here we were on our way home.

9/11 Memorial

After the Blue Sky Girls event the Brooks', the Dalton's and the Shuberts took a field trip to the 9/11 Memorial.  We started affectionately calling ourselves the wheel chair brigade since it's pretty difficult to navigate through a very busy NYC with three wheel chairs.  And it is quite a process to get in there.  Even though we had tickets to get in at a certain time, the line was ridiculous.  So we discovered THE ONE AND ONLY benefit to having Rett Syndrome and a wheel chair is that you totally get to cut the line.  We went straight to the front.

It is truly an amazing sight.  Liv kept asking me what this was and why we were here.  I'm not even sure what I said to her but a stranger, that was apparently listening to our conversation, said "that was a perfect explanation." 
 Lucky that we got to cut the line because about 20 minutes after we got in, Juliana started crying.  I think it was her tummy, so off went the Wheel Chair Brigade in search of restrooms.  It took us some time, but we finally found some decent bathrooms in the Winter Garden Atrium. 
 This cute chick next to me is another Emma and she also has Rett Syndrome.  It's really cool because Emma can walk!  So Juliana and I were sitting on the steps and Emma got out of her seat and came over and sat next to us.  She is incredible.

 After that adventure we headed to The Stand Four. If you don't know about this place, they were on some foodie network for having the BEST Toasted Marshmallow Milkshake.  We had the pleasure of coming here the last time we came in with our good friends Gina and Rob, but Jen had never been.  It was her dream to have the mystical milk shake (and yes friends, you can also get them "adult style" with vodka!)  So finally her (and Mark's) wish came true!  And yes, it's every bit as delicious!

Saturday, October 13, 2012

Blue Sky Girls

So after a day full of information from all of her wonderful doctors, it was time to take part in the the 2nd Annual Blue Sky Girls Event in New York.  What is the Blue Sky Girls event?  More about that in just a second.

Here is Roger and Olivia grabbing some breakfast at the Hilton before heading over
And here is Omi and me doing the same.
And then off to the Tweed Courthouse in NYC.  So the event is the idea of the wonderful Dr. Djukic.  She calls it "Blue Sky Girls" because she honestly feels like the sky is the limit for these wonderful little girls.  What was once thought of as a death sentence, to her has so much promise for treatment and one day a cure.  So we all gather together to spread awareness and to ask for one very important thing, to give these girls the same opportunities for education as all kids. "Do not confuse my silence for lack of cognitive ability". 

So she gathered New York's finest - the NYFD to help with the event.
This is our friend Emma.  Her mom, Jen and I have been friends for years.  I had the pleasure of meeting Jen at a training that Dr. Djukic held about 2 years ago, but this was the first time our kiddos could meet.  We were so excited!
Here is Emma giving Juliana a kiss.
And this is Emma's Sister Sarah.  Her and Olivia were fast friends.
And then it was time.  Dr. Djukic took the stage and gave this amazing speech.
Cliff notes to my favorite parts of her speech - 1. That despite all the people present, her speech is directed at our girls. 2. When she introduced the Fire men and said that "those who can will climb the stairs and those who are unable will be carried up by the NYFD and we will transform their wheel chairs into princess thrones. 3. And the part at the end where she reads a description of Rett Syndrome written by a girl with Rett Syndrome. 

All three parts made me cry and also feel so proud to be Juliana's mom!

And here is Juliana climbing all 30 steps in front of the court house. If you haven't watched the video, Dr. Djukic says the stairs are symbolic.  Climbing stairs move us forward and upward - which is where our girls are going.  We were so proud of her.

And then at the end balloons were released.

Some balloons like this one said "Anna Banana" on them.  In memory of our sweet Anna.  She is always in our hearts.  She was a fighter and I would like to think she is Juliana's angel.

Dr. Djukic - you have a very special place in our hearts.  Thank you for all your hard work and your passion.
Another incredible lady - Monica Coenraads, Executive Director of the RSRT. 

And these are the incredible siblings.  Alli and Sarah both have sisters with Rett Syndrome.  It is amazing to me, (1) how quickly this trio bonded and (2) how mature they all are.  Sisters Rock!
Here are the sisters taking their turn at the steps!

After that it was time for lunch.  Juliana was so happy just hanging out with Emma.  And I love that Emma chills out with her leg propped up.

Friday, October 12, 2012

The Big Apple

To say this family LOVES New York is an understatement.  So you can imagine how lucky we feel to have found the most amazing doctor for Juliana (Dr. Djukic at the Montefiore Rett Clinic) right here in New York.  We don't get to come too often, but when we do, we really try to enjoy our time there. 
We were fortunate enough to find a room at the Hilton, right by Radio City Music Hall.  Here we are the first day, walking around the town.

Here were my awesome camera skills.  You can really see Juliana behind her computer screen, right?
The streets were packed because of a Jonas Brothers concert at the Music Hall, and Juliana was a nervous wreck.  I don't know if it was just the travel or what, but she had not been that bad in awhile.  So after dinner and a short and slow stroll around several hundred people, we decided to call it a night hoping a good nights rest would be all she needed.

The next day our driver Rick picked us up as usual, bright and early to get us to the Bronx on time.  Unfortunately we did not take any pictures with her amazing doctors.  We learned a ton in our time with Dr. Djukic.  Have I mentioned how much we LOVE this lady.  She is truly incredible.  So, here are some of the highlights:
The Good News:
  • She was so impressed with how well Juliana is communicating with her computer.  While we were there Juliana let us know she had to use the restroom.  I had just taken her and nothing.  We get in the room and she starts with "Bathroom".  I'm thinking, really!?  We just went.  So I asked her, "Are you sure, because we just went to the restroom?"  She said - YES! So I excused ourselves and took and guess what, she really had to go.  She also repeatedly thanked Dr. Djukic and said I love you.  I think she started showing off when she saw how excited Dr. Djukic was.
  • Her lower extremities are in great condition.  She is doing very well with bearing weight and initiating steps.  Really the only thing lacking is balance.
  • Dr. Djukic is very happy about Juliana's school situation and that she is in a mainstreamed class room.  She is even going to hold a conference call with all of Juliana's school team to give some advice and answer any questions they may have.
  • We met with GI doctor because she has been throwing up again and it seems we have not increased the dose of her prevacid since she was two years old.  We upped it a bit and it seems to be doing the trick!
The Not So Good News:
  • Her arms are very tight.  She always has them bent into herself, it's kind of like her comfort position.  This is very bad because it is very difficult for her to extend her arms now, especially the left arm.  This will only get worse if we do nothing and eventually she will have little to no range in her arms.  So the plan - Botox.  Who knew.  She will get Botox injections in her arms which apparently loosens the muscles that she is holding so tight.  Then we will get arm braces that she will wear through out the day, off and on to maintain that range.
  • We have been noticing Juliana kind of "checking out" for about a minute at time several times per week.  We weren't sure if these were "Rett Episodes" or possibly seizures.  We were hoping for "Rett Episodes" because they weren't anything like her other seizures.  She isn't stiff or holding her breath, her eyes don't roll back like in other seizures.  She just kind of stares off and is pretty much non-responsive for about a minute and then she's back.  Fortunately she one of these episodes while we were with Dr. Djukic and she did feel like this was a seizure.  So the plan - up her meds again.  We are trying this for about two weeks, if we see improvement then great, if they keep happening we need to do a follow up EEG to (1) confirm that they are seizures and (2) discover what kind they are and if a different med might be more effective.
  • And finally, the one that probably scared me the most is her back.  We had x-rays done six months ago here in Dallas to confirm that she had a scoliosis.  She did and it was measured at about a 25 degree curve.  Now, just 6 months later, we had x-rays done and it has progressed now to a 30 degree curve.  She has gone through a bit of a growth spurt which could have caused it to worsen at a much faster rate, but at any rate, it was highly recommended that we brace her back in an attempt to slow it down.  I know many people in the Rett community are torn about this method and many have not seen too much of an improvement with bracing.  But here's our thought - it's a brace.  At the end of the day, if we see no improvement or it is so uncomfortable and she hates it, we can always take it off.  The alternative to bracing is waiting until it gets so bad and we have to have surgery where they will fuse her spine together.  So I think at this time we are opting for bracing in combination with some serious PT/weight bearing/stretching/exercises.
So as you can imagine, this was a full day of appointments.  We got there at 9am and didn't finish until about 3pm (with no lunch break)  Thank goodness that we had Omi with all of her bags of tricks.  Olivia had a blast with her.  And here is one of my all time favorite pictures of my girls.  After 6 hours of appointments for Juliana and 6 hours of waiting for Olivia this is what they did the second they were reunited.  I absolutely love those kids!
 So from there we had lunch in the hospital cafeteria since there was nothing within walking distance and we couldn't wait any longer.  5 huge cheeseburgers later we were refueled and ready to go.  We had wanted to visit the Bronx Zoo, but by the time our driver got to us it was 4pm and zoo closes at 5pm.  Oh well, maybe next time. 

So we headed around town.
 Still can't believe how happy these little girls were after a full day at the hospital.  I guess they are city girls.  Olivia informed me she is going to college in New York!  Yes!!!! I can visit once a month.

 At the Lego store in Rockefeller Plaza

 Then we stopped in at St. Patricks Cathedral.  Beautiful

 Then after all of that walking we were ready for some dinner.  We just wanted something easy and cheap, so guess were we ended up..........Fridays in Time Square!  Doesn't Roger look super excited about this choice?
 And what to order.......So Juliana quickly chose the spaghetti and Olivia chose cheese burgers.  Well for some reason, they both thought the spaghetti was spicy.  I tried it and was a little garlicky but not spicy.  So Juliana ended up eating Olivia's cheeseburger patty and Olivia cleaned off the spaghetti and placed it on the bun in a happy face formation.  This is her carb only diet.
 And this is another one of my favorites.  Again, after getting up super early, 6 hours at the hospital, walking around all night, this is her face.  She loves to be out and about!

 We ended up buying them some New York scarves because it was much colder than what we packed for. Here are our city chic girls!
 Time Square in the background.  We would have walked but it was freezing and we still had quite a walk back to our hotel.
 Then when we got back it was bath time for the girls - partly because they needed it and party because I thought it would warm them up nicely.  Here is one of my little mermaids.