A new baby brother...

Good Morning!!

Message from Erik and Dawn:

Hope everyone has been having a great holiday season.  We have been a little bit busy...

Analise is still doing great (other than being sick for the past couple of weeks with a cold and ear infections).  She is talking a little bit more and realizing she can move to different places by scooting around.  Her movement in her arms is still minimal, however, she is able to control her arms much better, and even grab things with her hands even though she can't move them.  

We are still waiting for the gait trainer walker, it is being held up by insurance red tape right now!!

Analise is in love with Apple products and books.  She can even change pictures on a learning game by pressing her hand on the screen of an iPad or iPhone.

Analise is also a big sister now!!  

Blake Edward Persek was born on Friday, November 30, 2012 at 9:01 a.m.  

He was 7 pounds 14 ounces and was a little over 20 inches long.  

On my way to taking the kids to school on Friday morning, I got a call from Dawn saying, "get back home NOW, the contractions are getting STRONG!"  I turned around, packed up the crew (Kaley, Kyle, Kassandra, and Analise), and headed to the hospital.  

We arrived around 7:45 a.m. and headed to labor and delivery.  The doctors said she was at 6 cm and 100% effaced.  Then the contractions became stronger and when they checked her again, she was fully dilated and unable to get an epidural.  Obviously, Dawn was not happy.  But with just a few pushes, Blake entered the world at 9:01 a.m.  A little more traffic and I would have had to deliver the baby in the car, yikes!  

Blake is a healthy baby boy and although Analise was excited to meet him, she was sick so she has actually had to stay away from him.  But she still says "hi!" every time she sees him and recognizes him by his name.  Since Analise has been sick, I have been taking care of her while Dawn takes care of Blake.  Despite all our precautions, now Blake also caught whatever has been going around anyway, so we are keeping a close eye on him. 

This has been a bit of a transition, as you can imagine, for all of us,   but hopefully these 'bugs" will leave us alone for a little bit and we can get back to normal life (well as normal as can be with 2 babies under 16 months and older kids in sports and high school, etc, etc, etc).  

Alright maybe that won't happen, but we can dream... but you need sleep to dream... so we can hope.  

Here are some videos and pictures.  

Trick or Treating at Auntie Monika's house

My Second Halloween...I love chocolate!!

Me and some of my cousins...Ok, everybody look at the camera...or not!!

Have a Merry Christmas and a Safe New Year!!
Enjoy these short videos!!

Turning the pages of a book with her feet

Playing her new game putting the ball into a cup.  She is learning how to compensate for not being able to move her arms/hands. You'll see how incredibly resourceful she is already becoming. 

Scooting to her dolly

Clapping with her feet

Having a conversation with her Daddy

What do I do now????

She loves playing this game!!

Analise moving her index finger...just the start!!

Analise has started to consciously move her index finger when asked to do so, and seems to enjoy it!!  She is starting to make the brain/hand connection, which is essential to moving the rest of her fingers. 

Please continue to pray for our Sweet Analise!!!

Go Analise...one finger at a time!!!

Cousin Isabela's essay and pictures of Analise

Our 8 year old granddaughter, Isabela wanted to enter a PTA photo/essay contest at school and wrote the following essay about her cousin Analise and also took these pictures, which she titled "Bubbly Moments". Even if she doesn't win this contest, she has won our hearts!!

"When I think of the theme "The Magic of a Moment" I think of my cousin Analise. Analise was born with a rare condition Arthrogryposis Multiplex Congenita. This condition causes her to have smaller muscles in her arms and problems with her legs. Although she is only one she's had so many surgeries and has gone through so much. Since she has trouble moving she is learning to find ways through her challenges. She uses her shoulder muscles to move her arms. She spins and scoots since she can't crawl or walk. Through all the struggles she faces I realize there'S ALWAYS magic in every moment."

(sorry the picture is a little blurry, it is a picture of the picture) 

BUBBLY MOMENTS

Summer/Fall 2012 with the Perseks

  Analise being very resourceful and turning her pacifier around

Alright, we need a time machine to just slow life down.  Time is not waiting for us at all!!  

The kids are getting older and older before our eyes, aches and pains are coming to places on our bodies we didn't even know existed, and the minute things are crossed off of our "to do list,"  100 more things magically appear.  Crazy life, but we still have smiles on our faces (most of the time :)  !

Analise is doing well.  We, as well as many of you, are still waiting for movement from her shoulders down to her fingers.  She wants to move, and uses her shoulders and chest muscles as much as she can, but she still only has a slight twitch of a few fingers.  The doctors say that movement is still possible at any time the first couple of years, but after that, if there is still no movement, it's not as promising.  But that is what we love about the doctors in Philadelphia, they NEVER say NEVER!! 

We hear positive, promising comments each time we go back to Philly.  They work with the doctors and orthotists out here in California to make sure Analise is being taken care of.  They do thorough evaluations and want positive results as much as we do.  We just wish they were a little closer.  We drive through Philadelphia now like it's our second home... we don't even need GPS any more!!

We took Analise for her follow up appointment with Dr. vanBosse and Dr. Zlotolow in Philly in September.  Analise is starting to scoot around in circles, grab balls with her hands and lift them as high as her arms will let her, and last week she even rode a horse:)  In Philly, she even started walking in a gait trainer.  

 On a "gait trainer" at Philly Shriners.

Analise should be getting her gait trainer here in California soon.

It's amazing what this little bundle of joy is doing without the use of her arms.  

We can't wait to see what the future holds for her!!

The rest of our family is also doing well:  

I am teaching third grade now and loving it.  It's difficult to change grade levels, but I absolutely love the ages of these kids.  

Dawn and baby boy are doing great.  There was a little drama with the pregnancy, but all is well and both are healthy.  Dawn can't believe how much he kicks and punches.  Come December, we will have an even fuller house!! 

Kaley is taking her driving test very soon, but won't tell anyone the date until she passes.  She is really liking anatomy & physiology and statistics and getting A's in these classes that will prepare her for career choice.  She is leaning towards becoming a nurse as her senior year quickly moves on.  

Kyle tried out for the water polo team as a freshman and made it even though he never played water polo before.  Being the goalie is a tough job but he's getting better every day.  He is looking forward to playing lacrosse for a club team in the winter and spring.  

Kassandra has straight A's (mostly A+'s) in her classes in her first year in middle school and has become a soccer scoring machine.  

Here are a few pictures from our busy summer and enjoy some videos that are sure to make you smile.

Analise is starting to "scoot".  She loves to show us her "mad" and "happy" face!!  

Celebrating my parents' (Grandpa Richard and Abuelita Marti) 25th Anniversary with the entire family in July in Maui

Our family camping trip at San Elijo in August with one of Kyle's friends, Reed

On the plane on our way to Philly in September. Analise behaves very well while she is watching her favorite music video of The Laurie Berkner Band ...but when it stops...WATCH OUT!!! 

Having fun at the Ronald McDonald House in Philly. 
Thank you Ronald for another great stay at the Ronald McDonald House during our last trip!!

Analise on her first apple picking trip to Oak Glen with the family... with her cousin Eva on her wagon, a gift from Grandma Annette and Grandpa John

Analise's picks her first apple...with a little help from Mommy!!

Happy Fall!!

Happy 1st birthday Analise!!

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.

With my brother Kyle and sisters Kassandra and Kaley

With Mommy and Daddy

TEAM ANALISE:

MY FAMILY AND FRIENDS...THE BEST SUPPORT TEAM EVER!!!

Thank you for sharing your awesome pictures with us!!

And soooo many others whose pictures aren't included here!!

Happy 1st Birthday Analise!!

We LOVE you!!

Thank you Mommy for making this special birthday cake for me
and thank you EVERYONE for all your love, support and prayers!!