Sweet Analise Rose's Journey with Arthrogryposis, Amyoplasia type: August 2012

From Erik and Dawn:

"Happy Birthday to you,

happy birthday to you,

happy birthday dear sweet Analise,

happy birthday to you!!"

Yayyy!!! It's my birthday!!!

One year ago today was one of the happiest and saddest days of our lives. We went into the hospital on August 7, 2011 expecting to be home in a few days with our new baby girl. We knew life would change but we had no idea what was in store for us.

Dawn did great with the delivery and everything went very smoothly and quickly (only about 8 hours from when she was induced which is not bad for her first). But the minute Analise came into this world, time seemed to slow down to allow us to take everything in.

I remember saying "is everything o.k.?", as many different doctors and nurses came in and out of the room looking at Analise. I just remember them saying, "there's something wrong with her arms and legs." Not necessarily the thing you want to hear on your daughter's "birth"day. I kept asking everyone questions, as I always do, but didn't seem to get many answers.

After they carefully cleaned Analise up and I cut the umbilical cord, they handed our beautiful daughter to Dawn for the first time. Dawn was still in a little daze from the medicine, but I could see the worry in her eyes. My eyes teared up too and I remember saying, "Isn't she so beautiful?" Dawn tried to breastfeed her, but Analise wasn't eating.

I told Dawn I would be right back so I could tell Kaley, Kyle, Kassandra, my parents, and Dawn's parents what was going on. I walked into the waiting room and began crying as I saw the kids. I told them that everything went well, and it will be fine, but that Analise's arms weren't moving and that her legs and feet didn't look "normal."

The next few hours seemed like days. We were all in shock and utter disbelief. That was when we first heard the term "arthrogryposis" being passed around. I remember seeing doctors and nurses printing stuff up from the internet so they had some idea of what they were dealing with. We immediately began doing our own research and tried to get answers to the million questions we had.

It was a very weird speaking with doctors and nurses and realizing that they were just as confused and baffled as us. Dawn tried to feed Analise again, but Analise began choking and turning blue, as specialty doctors were in the room. They immediately took her to the small NICU to monitor her. That was where we met an ignorant doctor, who simply said, "she's deformed" when we asked him what was wrong with her. Not exactly the best words for a beautiful innocent newborn to her parents.

They continued to monitor her through the night while Dawn and I tried to sleep, which was not too hard since the day lasted forever. The next morning, we were awakened by the neonatologist who informed us that Analise was going to be taken to Los Angeles Kaiser for emergency surgery on her intestinal tract. The word "worried" doesn't even come close to describing our demeanor. But in a sense, we were happy that "all the best and most knowledgable doctors" were in L.A. and that they would be treating our Analise.

After a great explanation from a wonderful doctor, we found out that Analise also had a Type IIIA colonic atresia (her ascending colon was not connected to her transverse colon) and that surgery to remove part of the colon was the only solution.

Mommy and Daddy always by my side ...

... and stretching my arms even when I was days old!!

After my colostomy surgery... I'm so glad I don't have that anymore!!!

All the doctors wanted to stop by and see Analise because her condition was so rare. It was there that we found out what was "wrong" with our daughter. She was was born with a very rare muscular condition called Amyoplasia, which is completely sporadic condition that accounts for about a third of all arthrogryposis cases.

I had to dress up for all the cute doctors stopping by to see me =)

The day I left the hospital after my first surgeries ... I get to go home!!

After 18 days in the NICU and 2 abdominal surgeries, we finally got to bring Analise home. In the weeks after, she had to endure painful stretching and 7 different casts on her legs.

My feet before surgery...

...My feet after surgery

It was then, after much research, and help from the AMC Support Group that we found "the experts in Arthrogryposis, Dr. van Bosse and Dr. Zlotolow at the Shriner's hospital in Philadelphia and our endless journeys to the City of Brotherly Love began.

The welcoming mural at Shriners Hospital Philadelphia

Dr. vanBosse (lower extremity specialist) and his staff on our first trip to Philly

Dr. Zlotolow (upper extremity specialist) on our second trip to Philly

Here I am on the steps "Rocky" used to train in the movie.
Well ... I'm a fighter too!!!

I LOVE, LOVE, LOVE Philly Shriners and Dr. vanBosse and Dr. Zlotolow!!

Right before my first surgery in Philly for my hamstrings

At the Philadelphia Shriners, we were given hope for our daughter's condition for the FIRST time!!

Although it is difficult, we will do what is best for Analise,

even if it means flying to Philadelphia from southern California on a regular basis!!

After several surgeries, countless doctor appointments, many flights across the country, many tears, and just as many smiles, Analise is 1 year old!!

And after being told the death rate in these children is high, that Analise will never walk, she never be able to feed herself, she will always be dependent on others...Analise is 1 year old and improving each and every day!!

We don't know what the future holds for our daughter. But we do know that no matter what, she will have family and friends that will support her and make her the best possible person she can be in this world. We will not let her fail because we will not let that happen.

This journey will not be easy, but we understand that and we are alright with that. We are so happy Analise is in our lives and we know she is so happy to part of our fun, funny, helpful, caring, crazy family.