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.

Spooky House

Check out our spooky house - created by the collaborative efforts of Daddy, Juliana and Olivia

Beautiful mums for the porch

 

Thank you so much team for making our house the best spooky house on the block!

Best Day Ever

Okay - best day in a really long time.  Don't get me wrong, times have not been terrible, but since all these meds changes we haven't really had "our Juliana" in awhile.  And this day proved she was back!  We had told them the night before we would be going to the Fair if everyone behaved at Sunday school and church.  Well, check that off the list.  Livi had a great day and Juliana stayed awake and alert (first time) and actually answered questions on her Tobii.  She also stayed awake through the entire mass at church (also a first in a long time).  So this was the face after church.  I think it's safe to say she knows she earned her day at the fair!

 

 Liv was just as excited.  Not really sure how they knew the fair would be awesome since Liv had never been.  In fact the last time we went to the State Fair of Texas Juliana was about 15 months old, I was about 5 months pregnant and it was 100 degrees in October.  Oh yeah, then Juliana threw up all over me, so then we left the fair covered in throw up and 100 degrees. 

 And it was soooooo cold this day too!  Low 50's and some drizzle.  Do you think she minded?

 First stop was the German dancers that always bring a smile (and laughter) to my face since it totally brings me back to Chevy Chase in Europeon Vacation.

 Livi the butterfly

 And out of the thousands and thousands of people at the fair, Liv ran into a classmate

 Then we decided before we start stuffing our face with junk food we should start with some rides.  Liv wanted to ride everything with no fear.  Juliana looked willing to try as well, so we started with this one.  For my El Pasoans, it is like the Himalaya at Western Playland (basically goes around in circles really fast while playing really loud music). I got a little nervous midway because I didn't remember it going this fast, but good news, both girls loved it! They were all smiles!

 After that we made a cotton candy stop.  Juj ended up with a Cotton Candy Gotee.  She rocked it.

 Then they rode this roller coaster.

 Roger's looking a little nervous - don't worry daddy!

 This is Liv showing the strangers next to her how she is going to raise her hands in the air!

 From there we moved onto my favorite part of the day- The Roasted Corn!  This is why I come to the fair.  Don't know what it is about it, but I could eat my weight in roasted corn. 

 Everybody loved the corn!

And I mean EVERYBODY! (Another first - she has never been so motivated to actually take a bite of corn off of the cob!)

You missed the part where we devoured several funnel cakes - all in the name of using up our tickets before we left.

And here we are at the famous Midway

And then to top off the evening we stayed for part of the Chinese Lantern Parade.  It was amazing.  

 By this time we were going on almost 5 hours of the fair, in cold weather and two kids who had not had naps. Right about this time we passed one of those obnoxious booths selling those stupid light sticks and other hodge podge shenanigans to get your money. So guess who decided they wanted one and continued to throw a fit about a light stick. So this is where we followed the parade out to our exit and left the fair!

The coolest thing about this day, is that it was completely unexpected.  I thought Juliana would not like the fair, that it would be too many people, too many noises, too much anxiety.  I figured we would go for about an hour and then have to leave because it would be torture for her.  But, the only consistent thing about Juliana is that she is inconsistent.  She loved every second - no doubt about it.  She loved the noise, the people, the food, the rides.  So today - WE WON!  Take that Rett Syndrome! And we will try to never assume what she will like or not like.  Rather we will try it out - whatever it may be.

Enjoying Beautiful Weather

It's officially fall in Texas!  At least for awhile.  We have had the greatest weather we had to get out and bask in it.  Unfortunately Juliana's swing was a no go due to the fact that it was full of nasty rain water from the previous days rain so we rode together.

 Liv was in charge of bubbles

 

 Not sure what I was doing here.  Don't judge.  I might have been midsneeze as I was having a terrible allergy day that day.  Whatever!