And not just taking a few steps or
standing, she is actually walking!!
At our last appointment with Dr.
vanBosse in Philadelphia this past summer, Dr. vanBosse had recommended doing
the serial casting, but remaining in Philadelphia for 6-8 weeks was not
possible, so we thought we would ask the doctors here in California to follow
Dr. vanBosse's recommendations. Several weeks ago we visited Dr. Hurley
at Kaiser Fontana and convinced her to try serial casting to stretch her tight
Achilles tendons.
All of you who know Analise know
what a resourceful little girl she is and that she has been trying to walk for
quite a while, but her Achilles tendons are extremely tight which causes her to
walk on her tippy toes making it hard for her to balance.
Dr. Hurley didn't know if it would
work, but said she would give it a try. (The other option would have
been, and still might be, another Achilles tenotomy to lengthen the tendons.)
After her third set of casts, and tons of crying/screaming/restless
nights/"all done"/"take them off" moments, Analise realized
that she could balance rather well when her feet got to neutral. She was
taking a few steps here and there, but falling face first into our arms.
Then, on November 16, 2013, as she
was at her grandparents John and Annette's house, she balanced on her own, and
took her first steps, without falling, to her grandma. Fortunately the
big moment was caught on tape. Her smile and look of accomplishment was
priceless and she just kept repeating, "I am walking! I am
walking!" I'm not sure whose smile was bigger, Analise's or ours!!!
The following day, after
she learned that she could balance while turning a corner she walked all around
a coffee table by herself, again repeating our new favorite phrase, "I am
walking!" And now that is all she wants to do. And we
absolutely love it!! https://www.youtube.com/watch?v=LI2BY_wXIbU
A huge reason this is such a
monumental victory for Analise is that her original doctors told us that
Analise would never be able to walk on her own without support.
Obviously, we refused to accept this negative prognosis for our daughter,
but it was still a troubling thought that doctors would give up on our daughter
so quickly. They clearly do not know
Analise, and us, very well.
So instead of giving in to their
negativity, choosing to do whatever was necessary to give Analise every
opportunity to walk actually became our number one goal.
And now after all of the flights to
Philadelphia, the relentless doctor's visits, the hurt backs following her
around the house in her gait trainer, the incredible love and tolerance of our
family, the competition with her 11 month old brother who is already walking,
and her sheer will, Analise is walking. Analise is walking and SHEIS
AMAZING!
Here is a short video of her walking, still wearing her casts:
Several people have already seen the
videos of her walking and there have been many different reactions. From
tears of joy to full astonishment to utter amazement. I always thought,
that when this day came, I wouldn't be able to hold back the tears. But
for some reason, it was different. I didn't cry. I think that I
have told myself so many times that she would walk, I already knew it
would happen and the tears didn't come. But the happiness… the happiness
came and hasn't left!!
A few days ago, Analise had her casts removed and received new AFO's (Ankle foot orthotics) We worried that if her Achilles tendons had not stretched enough, she may have to get the tenotomy again. We will have to
wait and see what Dr. Hurley thinks, and we may also have to consult with Dr.
vanBosse, but the way she is walking is very encouraging!!
Grandpa Richard and Abuelita Marti took Analise to get her casts off and get her new AFO's (while Mommy was having gallbladder surgery) and they promised Analise that if she was behaved and was brave, they would take her to McDonalds for ice cream. Here is Analise walking from the car all the way into McDonalds' counter to get her well-deserved ice cream. The progress in the last couple of weeks has been incredible!!! https://www.youtube.com/watch?v=J3cPjn6JUoY
To see this little girl's pure delight at being able to do something that we all take for granted is beyond priceless. I see her walking every day, and I still watch the videos just to see that smile. She now says "I walk ALL DAY"…and she does!!!
I'M WALKING!!! I'M WALKING!!!
Analise loves to see herself walking and standing in the mirror. She is so proud of her accomplishment and so are we!!
Arthrogryposis Multiplex Congenita,
Amyoplasia has been challenging. It has changed our family in so many
ways. But it has also allowed us to see how bright the future can be.
It shows us that with determination, perseverance, will, hard work,
family, and love, anything is possible. We can't wait to see what the
future holds for this girl.
Thanks for all of the encouraging
responses, thoughts, and prayers. We are surrounded by incredible family
and friends.
You have helped us, and Analise more than you will
ever know and this awesome milestone gives us the opportunity to tell you all
how grateful the Persek family is for your love and support.
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.
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!!
From Erik and Dawn: We know, we know!! It's
been 3 months since this blog has been updated, and we thought about it often,
but unfortunately, with a 17 year old, 14 year old, 12 year old, 19 month old
and 3 month old, time is not exactly on our side. We do, however, take
lots of pictures and videos, so our time is well documented. (You can
enjoy many of her short videos below.) Analise has really been
improving in all areas of her life. She is really starting to use her
voice now. Her vocabulary, although small, is expanding daily and her mimicking
is really cute. She actually understands almost everything we ask or tell
her, but we are now working on the process of getting her to say those things
on her own. Analise loves music and is
even starting to sing some words and dance to the songs she loves.
Dawn and I noticed that her
upper frenulum (skin between her upper lip and teeth) comes down very far and
is attached between her two front teeth. We found that several AMC kids
had the same problem so it could be a part of the condition. There are a
few different options, but most revolve around waiting a couple of years to see
what will happen. The dentists actually say that the kids will eventually
fall and the frenulum will tear with the fall. OUCH!! Not exactly what we
want to happen to Analise, especially since she won't be able to break the fall
at all.
Physically, Analise
is much more active. She can scoot around the entire house in record
time, and smiles the whole way. She still has minimal active arm
movement. Her right index finger still has a strong twitch, but we are
waiting for the others to follow suit.
We are also trying electric
stimulation on her forearms and biceps. It's not easy (on her or us), but
hopefully it will stimulate her muscles and help them to move. We got
some information from a fellow AMC father, Jason Coutee, about how the muscle
stimulation has helped his son Jace. Don't know if you remember Jason,
but we posted some of the songs he has written about his son a while
back. I think you can also see them on his new blog: http://amyoplasia.com/?page_id=93
Muscle stimulation time...hey this isn't that
bad!!
Analise finally got a
"loaner" gait trainer from CCS until we work out the insurance for
her own walker. This gait trainer is much better than the walker she was using
because it supports all parts of her body, while promoting proper techniques
for walking. She loves roaming around the house and it's only been one
day. It was a great sight today, walking in the front door after a long
day at work and seeing Analise walking around the house with a smile on her
face. We can't wait to see what she will do in the future.
Although her arms don't
move "regularly", she finds a way to do everything!! Some of
the things she can do: play the piano and xylophone, pick up small and
large items, stack toys and blocks, put things away in containers, push buttons
(especially on the remote control when I have sports on TV), tap rocks together
to make music, and clap (in her own way).
Here are some short videos of Analise doing things her way:
Playing the Xylophone, as well as learning her colors!!
But I want to watch Laurie Berkner, not Football!!
Analise is truly an amazing
girl that doesn't give up. Last week she also got her new AFO's (ankle
foot orthotic) and KAFO's (knee ankle foot orthoticts) that fit much
better. The staff at Johnson's Orthopedic in Riverside are incredible and
really do everything they can for Analise.
THERE IS ALSO SOME MORE GREAT NEWS, WE'VE SAVED THE BEST FOR LAST!!:
Analise is getting fitted
for a special Wilmington Robotic Exoskeleton (WREX), an arm orthosis that
helps children with very little residual strength to move their arms in space.
We are very excited about
this, especially since there are very few people in the world that have this
orthosis! In June, we are visiting Dr. vanBosse and Dr. Zlotolow in
Philadelphia for her semi-annual checkups, and then we are headed to Delaware
to get Analise fitted for the WREX. WREX was even featured on a little
girl with AMC named Emma during the New Year's Eve videos of 2012 on
ABC. This is still very new for us, so as we find out more information, we will
let everyone know.
What Erik rigged up in the meantime to help Analise move her
arms...let's call it a very primitive WREX
We will also be attending
the AMC convention in Las Vegas this July for the first time. It will be
exciting to finally meet all of the great people we hear and read about on
Facebook and through Shriners in Philadelphia. We can't wait!
Family update: Dawn has been back to work
for a couple months now and feels very busy, as expected, but somehow keeps a
smile on her face. Kaley is getting very close to turning 18 and graduating from high school.
She also bought a cute little car for herself, so she will be looking for
work very soon.
-->
Kyle has been playing high school
lacrosse and is doing very well. He has scored several goals and has had
many assists in the programs' first year. I am helping coach (even though
I am still learning the sport) and having a blast. I love high school
sports and the excitement that comes with it. I feel just as excited as
Kyle during game days.
-->
Kassandra is doing extremely well in school
(straight A's and A+'s for the second time in 7th grade) and is becoming a
scoring machine in soccer. Analise is even taking after her father and
yelling "Kassandra" during the games.
And the littlest one,
Blake, he is as cute as can be. Analise absolutely adores him and we are
pretty sure he is going to think his name is "You're so cute!"
because we say that about 100 times a day. He is always happy and smiling
and definitely brightens our family's day.
Sorry if we have been a little out of the loop with everyone, but hopefully
soon we will get back to "normal" hahahahaha.
Have a great Easter, and hope you had a wonderful Christmas!
