Arthrogryposis Awareness Day and Trip to Philly Shriners, Delaware (WREX), New Jersey, New York

From Erik and Dawn:
"It's AMC Awareness Day, June 30th.  Thanks for all of our family and friends for wearing blue today to support Analise and our family.  She says "tank youuuuu" from the bottom of her heart as do we.

Well it's been a busy couple of months and lots of progress for Analise.  She has been such a trooper lately, much more than her parents (Can we get a little sleep please?).  

Analise has really been progressing in several areas.  As we were told and expected from such a smart little girl, "she is finding a way" to do everything and it is so AMAZING to watch.  We are constantly amazed at how she accomplishes goals and figures out how to do things.  She can finally lay on the ground softly and get back up all by herself.  This is our favorite to watch because she learned this all on her own:
https://www.youtube.com/watch?v=ezFhAeqAjng

Analise can now stack blocks using her hands and legs, she knows all of her colors, she can count to 5 she can put puzzle pieces in their spots while making sure we know she knows the colors:
https://www.youtube.com/watch?v=AajiRVjZobU

She is starting to go to the bathroom on the toilet and letting us know by doing her little grunting noises (we'll skip the video for this one ;-)  ), she walks around the house and neighborhood in her gait trainer:
https://www.youtube.com/watch?v=Yc73GEizf-E

...she loves to swim in the pool and jump off of the rocks (with my help of course), and Analise scoots around as fast as we can walk.  Her abs of steel rival those of her crossfit Auntie Ashley and Uncle J.B. so watch out!!

Analise also took her first step and is standing up from a sitting position.  She still has a ways to go before she walks by herself, but it its a great first step:
https://www.youtube.com/watch?v=V3jU2eljAWI

We also went back to Philadelphia last week for a check-up with Dr. vanBosse and Dr. Zlotolow at the Philadelphia Shriners Hospital.  Analise and Dawn had a tough time the last hour of the flight with stomach aches and ear aches.  Analise cried during the landing, screaming "ALL DONE, ALL DONE" over and over again :(!!  As soon as we landed I got up and took her to the bathroom but heard over the speaker system in the entire plane, "We are very close to ending our flight, but we will keep circling until the person in the bathroom returns to their seat."  Definitely a flight to forget. 

We went with the whole crew including Abuelita Marti and Grandpa Richard, so 9 in total.  Analise was not very happy with Dr. van Bosse, the lower extremity specialist, because he stretches her pretty good.  But overall he said her legs look good and made a few corrections to her AFO's.  He wants to serial cast her legs to stretch her Achilles tendons and correct her feet a little more, but that would require us staying out there close to a month so we probably won't be able to do it.  We are going to try and ask Dr. Hurley or the Kaiser out here to see if they can do it under his prescription.  

Dr. Z was impressed with the fine motor skills of Analise's  arms and hands, even with the lack of movement.  He said her thumbs looked promising for "something" in the future due to their size, so that is something to look forward to.  He wanted us to keep stretching her fingers to help give the weak muscles a break when trying to move the fingers:
https://www.youtube.com/watch?v=Jp2IJkfJ3Zo

We also had a great opportunity to visit Tariq Rahman, Design Research Engineer and Whitney Sample,  Research Designer at Nemours Biomedical Research, A.I. duPont Hospital for Children in Wilmington, Delaware.  Both Whitney and Tariq were extremely supportive of Analise's participation and did a beautiful job creating her first WREX.  My parents worked very hard to get us into the WREX program.  We're still working on having the WREX paid by a grant that is available at Dupont, which will be over $3000!!    

Analise went on Tuesday for an evaluation and fitting for the WREX and a few days later we came back to let her test drive her new "Wrexy."  It was an incredible moment to see her playing and moving her arms in a "normal" fashion.  

Look at that happy baby!!

Analise was shooting rubber bands at me with the help of Whitney Sample(one of the developers/ designers of WREX), stacking blocks, and lifting toys without using her legs, which she transitioned to rather easily.  

Playing for the first time with the WREX:
https://www.youtube.com/watch?v=oE182J0GvIQ

Shooting Rubberbands at Daddy:

https://www.youtube.com/watch?v=hTu1RJhScLo

Playing with a ball, stacking blocks and lifting toys:

https://www.youtube.com/watch?v=HEiAobzYRdM 

Shooting Rubberbands at Whitney while having Tariq make adjustments on the WREX:

https://www.youtube.com/watch?v=MKm3X35I4os

At home now, working with her therapist, stacking blocks while wearing the WREX:
https://www.youtube.com/watch?v=VOkTvWCwzcM

https://www.youtube.com/watch?v=UtoGx3Dw-bs 

It will take some time for Analise to fully get into the functionality of the WREX but this is a great opportunity for her and hopefully it will help boost her confidence and let her know the unlimited possibilities of her arms in the future.

I loved shooting rubber-bands with Whitney

We also did a little sight-seeing on our 9 day adventure.  I'm surprised we didn't end up driving in the ocean with all of our bad Google map directions but somehow we survived...barely!! 

We visited several places in Philadelphia including Reading Terminal.  We had some great pastrami sandwiches, cheesesteaks, and the BEST soft pretzels made by the Pennsylvania Dutch...we even went back there for thirds!!  We also went to the largest mall in America in the city of King of Prussia.  

We took a quick trip to Atlantic City to show the kids the Atlantic Ocean and the cool boardwalk. We had a blast on the Steel Pier rides. 

Then we rushed back for an extra innings Phillies game. 

Next we visited Manhattan in New York City. We bought the New York City Pass which allowed us to visit several tourist attractions at a great discount (you know me...Coupon King).  

We did A LOT OF WALKING...A LOT OF WALKING and visited the Statue of Liberty (via a cruise since it is closed until the 4th of July because of the hurricane):

9/11 Memorial:

Empire State Building:

Empire State Building View Back Drop

Museum of Modern Art:

Starry Night Painting at the MOMA

Top of the Rock:

Top of the Rock, Rockefeller Building...these are REAL pictures, not back drops...AMAZING...better than at the Empire State Building!!

Times Square:

I like Elmo better in books...I didn't think he was this BIG...
or drunk!!

At John's Pizza near Times Square..."no slices" is their motto!

Grand Central Station:

We took New York by storm in only 3 days, with 9 people, and a huge double stroller (not fun to move around up and down stairs to the subway.) 

The Subway

A swap-meet we ran into in the streets of NYC

Natural History Museum:

One night, on our way back to New Jersey from NYC,  Google maps told us to make a left turn on a ONE WAY street!!  So Dawn, Analise, Blake, and I turned left...and immediately noticed something was definitely wrong when we saw all the cars coming at us...yikes!!  Luckily the cars were far enough away and we were able to make a U-turn to safety.  New York streets are crazy, no more driving in Manhattan for me!!

Kyle went home a couple of days early to go to his Lacrosse Camp, but we visited a few more historic sites in Philly, including Independence Hall:

Right after this, it started pouring rain, with thunder and lightning and we had to run into a 7-Eleven until it died down!!

Then, we also visited the Valley Forge National Park in Pennsylvania.  Google again steered us in the wrong direction and we were stuck on the Pennsylvania Turnpike with no way out for about 20 miles, even though the nice Google lady kept saying "YOU HAVE ARRIVED AT YOUR DESTINATION"...but we persevered, just like the soldiers at Valley Forge!! ;-)

...and the best part is that we all survived, even though we came close to killing each other at times!! 

Overall though, it was a very productive trip with memories to last a lifetime.  Since we were able to stay at the New Jersey Ronald McDonald House and we used miles for our flights, we were able to do this trip on a budget. 

Analise has been using her Wrexy every day without overwhelming her.  She is gaining confidence without getting frustrated and that is our goal the next couple of months.  When she is tired of using the WREX she tells us "All Done!!" and off it comes til the next day. 

Next stop for Team Analise is the AMC conference in Las Vegas next week.  This will be our first time and we are very excited.  My parents are even facilitating one of the Grandparent workshops!!  We are hoping to learn a little bit more about this condition and meet other parents going through similar situations as we are.  

Thanks again for all of the support for Analise and our family.  We hope you enjoyed these videos and pictures."

This is Grandpa and Abuelita now:
Seeing Analise use her arms for the first time was such a joy and we feel so blessed to have been a able to be a part of it.  Analise is making such extraordinary progress and we have great faith that this is just the beginning of the rainbow.  Please continue to keep Analise and her family in your prayers.  On to Vegas now for the AMC Conference to learn more about Arthrogryposis and to share our journey with other families!!

A double rainbow for Analise in New Jersey...
so much in store for her!!