Analise's journey to Philadelphia

Analise enjoying her bath before her doctor's appointments

Yesterday, Analise had the long awaited evaluations at the Philadelphia Shriners Hospital by Dr. van Bosse and Dr. Zlotolow.  We were impressed at how well she behaved during the lengthy evaluations, and even managed to smile at them while she was being assessed.  This was an all day event, from 8:45am-3pm, and guess where we went for lunch after the evaluation...yes, more cheesesteaks!!   ;-)

Dr. Zlotolow, the upper extremity specialist, was the first doctor to assess Analise, along with two other doctors doing their fellowship at Shriners.  Dr. Zlotolow shared the following observations:

• Analise has good external rotation of her shoulders. He said that he was pretty optimistic that she may be able to reach the back of her head with her hand once she has more movement and he does not foresee any surgeries for her shoulders.
• Analise has good movement of her elbows and he anticipates she may be able to reach her mouth with her hand when she has more movement. He also does not foresee surgery for the elbows.
• Analise's forearms are positioned well to hold things between her hands.  He was pleased with the pronation of the forearm and said that Erik and Dawn can begin to work on her rotation (pronation and supination) with new exercises that they were taught yesterday.  
• Analise may need tendon transfers to help with the flexion of her wrists.  He stated that he did not think the bones in some of her fingers were fused, as Erik and Dawn have been told was a possibility. He said he was happy with the pronation of her wrist and will continue to watch her over the next few years.
• Dr. Zlotolow said that if surgery was necessary for the hands, it would probably not happen until she was 1-3 years old.  He said that they have learned that it is best not to intervene with surgery too early and to wait for the child to show them what they will need with time, observing them as their nerves and muscles continue to develop.  Dr. Zlotolow said that Analise does not have Distal arthrogryposis, she has typical amyoplasia type arthrogryposis, as Dr. Tiller (the geneticist) had stated previously.  Dr. Zlotolow would like to see Analise again in about 6 months.  He ordered new wrist splints for Analise that were custom made by Alexis, the Occupational Therapist.

See how far I can get my hand if you help me!?!?

Analise being assessed by one of the Fellows.

Analise was then evaluated by Dr. van Bosse, the lower extremity specialist.  He removed the casts and assessed Analise's feet, knees, legs, and hips.  Dr. van Bosse shared the following findings:

• Analise's knees are facing the lateral sides of her legs because of tightness in her hamstrings.  
• The Achilles tendon was still not ready to be "clipped", but that in the next month or so, after continued casting, she should have  surgery to have both, the hamstrings and Achilles tendons "clipped" to allow for proper positioning of the knees, legs, and feet.  He stated that when Analise starts to walk, if she has pain or difficulty walking, she may need additional surgery to her hips.  

Dr. van Bosse and his assistant putting
on the new casts

Dr. van Bosse's assistant, Leslie,  and Dr. van Bosse

After Dr. van Bosse gave Analise her new casts, turning her feet out even more, she was seen by Alexis, the OT, who made new wrist splints just for her.  

I like my new splints...I outgrew my other ones!!

Alexis, the OT, making the new splints

In addition to Analise behaving amazingly well all day yesterday,  she also melted everyone's hearts.  She would look into all the doctors' eyes as they were assessing her, with such inquisitiveness, and even a smile here and there, probably thinking "who are all these people and why are they fussing over me?!?!".  

EVERYONE at Shriners:  Dr. Zlotolow, Dr. van Bosse, their Fellows, Dr. van Bosse's assistant-Leslie, Dr. van Bosse's nurse-Debbie, Alexis the OT, and everyone we encountered yesterday was AMAZING!!!  

At Shriners, they talked more about "when" Analise moves her arms, "when" Analise walks, not so much "if".  At Shriners Philadelphia, they have seen hundreds of children with arthrogryposis and have an extraordinary commitment to making a positive impact on their lives.  

The mural that greeted us when we entered Shriners Hospital

Analise may not be able to use her arms and legs like other children who don't have arthrogryposis, but we are definitely more hopeful after her evaluation at Shriners.  We know that with continued hard work from Erik and Dawn, with excellent medical treatment, and the the collective faith and prayers of friends, family, and everyone who loves Analise, she will be able to acquire enough motion in her arms that will allow her to perform the kinds of things that will give her as much independence as possible, such as feeding herself, grooming, toileting... 

and we continue to pray for so much more...

and who knows what God's plan is for Analise!!!

Another great benefit of yesterday's visit at Shriners, was being able to see the other children with arthrogryposis running around the waiting room with their casts, using their arms/legs to the best of their ability, exhibiting  incredible creativity, as well as demonstrating such empathy for each other.  One precious little boy, who was about 3 years old, was so bright, so verbal, so social, and soooo active, even running with his casts.  He befriended a little girl, who also had casts on her legs and was unable to walk, but was able to scoot around the room on her bottom, almost as fast as he was able to run. While they played, he would show her around and say "let's play here, or let's play with this", then occasionally he would turn to her and very kindly ask her, "are you ok?".  We can´t wait to see Analise running around like these happy, active, and  loving children!!!  

It was a wonderful, challenging, exhausting, exhilarating, hopeful day with Analise. We are looking forward to a return to Shriners Philadelphia soon...and more cheesesteaks!   ;-)

On the trip home, during the 6 hour flight, Analise did not cry even once!!  Analise has shown us she is ready to travel anywhere she needs to go in search of the best medical care!!

Although the most important outcome of this visit to Philly was the evaluation at Shriners, Analise took in some of the historical sites of Philadelphia... here are the pictures we promised you.

On our way to Philly-Analise's first road trip with Mom and Dad

Our first stop...cheesesteaks at Sonny's. . .
pay no attention to the boarded up windows  ;-)

Mommy and Papa loving me up. . . and I LOVE it!!!

The view from our room of City Hall with William Penn on the top  of the building.
We were fortunate to have a few nights worth of free rooms with rewards points, and were upgraded to a two bedroom,
so Erik, Dawn, and Analise were able to stay with us instead of going to Ronald McDonald House.

. . . and Independence Hall

Analise visiting the Liberty Bell . . .

. . .and as you can see, we were running out of daylight. . .
here is Princess Analise in her first carriage ride.

Elfreth's Alley, the longest continuously
occupied street in the United States...

Exercise time before the doctor's evaluations. . .
gotta get those muscles stretched!!

Analise arriving at Shriner's hospital

     Analise at the Philadelphia Museum of Art, where 

Silvester Stallone ran up the stairs in the movie "Rocky"

Yesterday was a big first step for Analise at Shriners. . .

. . . towards taking HER first baby steps. . . 

. . . We know this will be a journey of many steps. . . 

. . . but it will be taken one step at a time. . .

. . . All  of you have stepped up with your prayers and support . . .

. . . AND HER PARENTS WILL BE THERE FOR HER
EVERY STEP OF THE WAY!!!. . .

JUST LIKE ROCKY . . .
THE PHILLY UNDERDOG. . .
ANALISE WILL DEFY THE ODDS AND
WILL WIN THIS FIGHT AGAINST ARTHROGRYPOSIS!!!

WITH LOVE AND MANY THANKS
FROM PHILADELPHIA. . .
THE CITY OF BROTHERLY LOVE,
ANALISE