Surgery scheduled for April 4, 2012-

From Erik and Dawn:

"It's only been a couple of weeks since we've written anything on this blog, but every day that passes makes us feel like we are forgetting to do something.  I guess, in a way, this blog helps us too...  it allows us to tell Analise's story without having to retell it every day to various friends and family members ...it lets us vent our frustrations... and it lets us rejoice in Analise's accomplishments with the "world."

I remember in school, I HATED writing in journals and not in a million years did I think I would be a blogger.  But it's amazing what you do for your kids.

This blog is not only a blog for everyone in Analise's life,  but it is a blog for her!  She will be able to read (we will make books each year for her and us to look back on) everything that has gone on in her life with AMC (Arthrogryposis Multiplex Congenita), amyoplasia.

We love you Analise and hopefully someday you can continue this blog on your own with your own thoughts and accounts of your life with this condition.  

My Daddy...

and Mommy love me soooo much!!!

Analise is doing great.  She is really playing with her voice now.  Sometimes it even sounds like she is singing to us.  She is throwing up a lot less lately, although we still have to be very careful with moving or bending her after she has eaten.

Because Analise is unable to bring her hands to her mouth to provide the necessary baby oral stimulation, she is doing so by using her tongue.  Here are a couple of videos that illustrate how resourceful Analise is already becoming!!

Analise laughs on a regular basis now and every time I walk into the room, she smiles her little crooked smile and I melt.

Analise is doing great with her grandma Annette and Auntie Monika during the week.  She still isn't sleeping through the night yet and Dawn and I are very tired each morning.

Dawn is especially tired since she has to wake up at 5am every morning to get ready and then take Analise to her grandma Annette's or Auntie Monika's house and go to work, which is about a 1 1/2 hour drive each way from our house.  But it is worth every minute of it to know that Analise will be well taken care of and loved so much by her grandma and her auntie!!!

Tummy time with Grandma Annette

Analise with Abuela and Auntie Monika...Analise does not look very happy today because she is sick...just diagnosed with croup!!

Dawn would love to do a shared contract at her school so she could stay home with Analise more, but financially, it would be very difficult right now.  Hopefully we can work out something soon.  

Analise is starting to sit up for long periods of time by herself.  We are working on this so she can somewhat stay on course with normal baby development.  Her stomach, back, and neck muscles are still not strong enough yet, but they will be!!  

Look at me...I am almost sitting up by myself!!!

Analise is still not moving her arms from the shoulders down, but she is starting to move her arms using her back, shoulder, and chest muscles.  She can even manipulate her arms/wrists to take her hands off of the high chair tray.  

 Analise still loves her baths, especially because she gets to take off her orthopedic shoes!!!

Analise is eating her stage 1 foods much better, and is even getting through some of the vegetables.  I make it a point to try everything Analise eats and let me tell you something... I can eat almost anything...the baby food fruit is delicious...but some of those vegetables...whew... no wonder she makes those gagging sounds!!  I even tried the formula, yuck!  

Analise had an appointment with Dr. Hurley (the Kaiser orthopedic surgoen) last week.  She said that Analise's feet looked great and she was happy with the movement of her Achilles tendons, although she thought we should try and stretch them a little further.

Stretching Analise is so hard!!!  Not only does she hate it, but it is very difficult to know how much or how little we should stretch.  She is finally seeing a PT (physical therapist) and OT (occupational therapist) through CCS (California Children's Services) 2 times a week.

They only offered us therapy for Analise once a week, but we INSISTED on twice a week...AND WE GOT IT!!!  We only will receive their services for about 6 months out of the year, due to state budget restraints.  Their goal is to teach us what to do and eventually have us do most of the therapy on our own.

We also scheduled Analise's surgery with Dr. van Bosse at the Philadelphia Shriner's Hospital for April 4 (preop appointment will be on 4/2) for the hamstring tenotomy.  Another difficult decision!!!  

Surgery on babies is not fun, and we are not looking forward to it, but we are looking forward to a positive outcome.

This week we have been watching many videos on YouTube under the heading "arthrogryposis."  If you have a chance, check some of them out.  Relatively speaking, there aren't that many!!

It is amazing to see all of the incredible children with this condition trying to do the things that we take for granted every day...eating with a spoon, bringing food to their mouth, brushing their teeth, playing with toys, standing up, and probably the most important to us... walking.

We hope the surgery will give Analise the chance to walk, and hopefully without any special walkers or crutches.

Watching these videos, not only brought tears to our eyes, but they also gave us a glimpse into the possible future of Analise and her journey with AMC.

We can't wait to post Analise's videos of WHEN she reaches all these important milestones..."

With my new favorite toy

and drooling...but still happy!!!

Spitting up...

Analise with Erik's friend since 4th grade...Mike, with his wife Barbie and their son Chase

Happy New Year!!!

From Erik and Dawn:

"Happy New Year!!!  We hope everyone had a fun and safe New Year's.  It seems like many people did not like 2011 and are glad 2012 is here.  And although 2011 was somewhat challenging for us, we are very happy for 2011 because it brought us our beautiful Analise!!!

It has been very difficult raising a child with special needs, especially a newborn with all of Analise's challenges.  We have already been through so much, and its only been 5 months!!

2012 will be exciting for us because Analise will finally start to get over some of the challenges she had since the beginning of her life and she will show us what she can do.

Analise is spitting/throwing up much less and we were finally able to stop the Zantac.  She also got over her Bronchiolitis and we hope it doesn't come back.  She is ALMOST sleeping through the night, she still wakes up at 11pm and 3am every morning before starting her day at 6:30.  We are working on fixing that and can't wait for a full night's sleep.  

We started feeding Analise Stage 1 foods to give her mouth some different textures since she can't put her own hands in her mouth.  She loves the fruits and hates the vegetables, just like her mama and siblings and ... like my Abuela says... Cubans!!  

Analise enjoying her "fruit", you don't want to see her "vegetable" picture  =]    !!

Analise is starting to use her shoulder muscles to move her arms.  There is still no movement from the shoulders down, but you can see it in her face that she wants to and she tries REALLY, REALLY hard.  

 Analise has learned to take the rings off her hands using her feet!!

Analise is still wearing the special shoes and brace for her club feet, and she still hates them.  We do too, but her feet look good and that's what counts!  

We are still trying to schedule the surgery on her tight hamstring tendons.  It's looking like we will be going back to Philadelphia in March and April and hopefully into spring weather rather than the cold winter.  

Dawn finally had to go back to work this week.  It was very difficult for her and Analise.  It will take some getting used to, but at least we both have great jobs where we are able to spend a lot of time with our family.  I was lucky enough to have an extra week of vacation, so I got to stay with Analise for the week.  

For all of you stay at home moms out there, 
a big kiss from the rest of us!! 

It's very hard to get things done with a newborn... 

and with other kids in the house, "fuggeddaboutit."  

And although we haven't slept well, 
we have to eat and go to the bathroom only when Analise naps, 
and we can't get anything done...

...we wouldn't change it for the world!!! 

Analise will be staying with Dawn's mom, Annette, and my sister Monika during the work week and they are both very excited, which makes us VERY HAPPY knowing that Analise will be lovingly cared for while we are at work!! 

Goodbye 2011, Hello 2012 (and hopefully not the end of the world)!!  =)"

Cousin Carson is in LOVE!!

Cousin Tyler also loves his cousin!!

Abuelita Marti and Grandpa Richard's 10 grandchildren-7 of them spent the night with Erik and Dawn the previous night!!

Analise with her cousin Shayne, who is 2.5 months older

Auntie Jenni and cousins visiting from Colorado and enjoying the 80 degree California "winter"!!

Abuela with just a few of her great-grandchildren

Beautiful Auntie Jenni (who will soon be moving back to California...YEAH!!!!) FINALLY is able to hold Analise!!

Videos of Analise playing

Here are a couple of videos Brother Kyle and Sister Kaley made while playing with Analise.  

Analise LOVES her brother and sisters...and they LOVE her!!!

Kaley making Analise laugh

Kyle play dancing with Analise and 

Analise enjoying the little time she spends out of her orthopedic shoes  ;-)

Merry Christmas and Thanks!!

Next year we have to find a Santa that smiles  ;-)

From Erik and Dawn:
It has been quite a journey for our family in 2011!!   Analise has brought so much joy into all of our lives since her arrival in August.  The outpouring of love, support, and prayers from all of you has been such a blessing and has sustained us far beyond what you can imagine.  We wanted to close the year by sending you some new photos of our happy Sweet Analise, the best gift we can have for Christmas this year!!
We wish you all a very Merry Christmas and Happy New Year!!
With our love,
Erik, Dawn, Kaley, Kyle, Kassandra, and Analise

PS: We are still hopeful to be able to schedule her hamstring surgery at the Philadelphia Shriners sometime in the next couple of months.

A message of miracles...

The message at church this past Sunday was very timely,
especially during this season of miracles...

and WHO DOESN'T NEED A MIRACLE ?!?!

One quote from the message was:
"You face your greatest opposition
when you're closest to your biggest miracle."

We continue to pray for a healing miracle for Analise,

and ask for your continued prayers...
because we want the "biggest miracle"!!

The Matriarch of our family, Abuela Marta, Analise's 88 year old great grandmother, has asked us to share this message about miracles through the blog and... and how could we say no?!?!  =]

You may watch or listen to the message on your computer or smart phone through the link below.
Just click on the third icon on the right that says "watch".

It is not very long, but if you are pressed for time, you can start at the 10:00 minute mark...
(once the video has loaded)
AND if you have even less time, you can jump to 23:10 minute mark,
AND if you have just about 10 minutes, you can jump to the 27:45 minute mark.
Although, we are sure that as soon as you get a taste, you will want to listen to the whole message!!

http://www.friendschurchyl.com/media/articletype/articleview/articleid/142/its-not-too-late 

On a side note, on the way to church that Sunday, Abuela was even more enthusiastic than usual, telling us about an 11 year old girl she had seen on television the night before.  She said that this girl sang like an "angel" and wanted all of us to hear her...little did we know that a video of this little girl, Jackie Evancho, a contestant on last year's America's Got Talent Show, would be featured as part of Pastor Phil's message...coincidence?!?!
The song she sang was coincidentally titled "Angel".
Wow, so many coincidences!!!   =]

MERRY CHRISTMAS!!!

The Russell/Persek/Fernandes/Cosgrove/LaCombe Family Christmas Card

We have been sharing our family Christmas cards
every year for the past 24 years.  

We thought we would share this year's Christmas card with all of you as well because we are so appreciative of how all of you have "joined hands" with our family during this year...
THANK YOU!!

Left to right:

Erik, Dawn, Kaley, Kassandra, Analise, & Kyle- Monika & Isabela- Katrina- Marti & Rich- Amanda, Chris, Ava & Evan- J.B., Ashley, Tyler, Shayne, & Carson

... we find that …

“…In His presence there is a fullness of joy…”

                                                  Psalm 16:11             

Thank you for joining hands with our family

during a year filled with many challenges…

OHHH…BUT SO MUCH MORE JOY!!!
 

We wish you much JOY during this Christmas Season…

…and throughout the New Year!!

Back row:  Kaley, Kyle, Ava, Tyler, Carson, Analise

Front row:  Kassandra, Isabela, Evan, Shayne

Video of Analise kicking her feet with Daddy and Mommy

FINALLY, Analise starts physical therapy!!!

Message from Erik:

WOW!!  Super busy last couple of weeks.  Sorry the posts aren't coming as often lately.  For some reason this Christmas season is busier and more stressful than ever, and we're getting less done.  Christmas cards are coming soon too!  I will post them on the blog also.  

As for Analise, her bronchiolitis seems to be getting better.  She has less congestion and is not coughing through the night any more.  We have reduced the albuterol treatments, for right now.  She is sleeping a little more each night.  For some reason, she loves to cry around 3 am every morning for her 4 ounces of formula.  

Analise still continues to throw up a little bit each feeding.  We were a little concerned so we took her to get an upper GI X-ray on Tuesday to make sure there were no problems.  Analise had to drink 2.5 ounces of liquid barium that allows the X-rays to see how the food goes through the system.  Her bowel movements after the barium were white and painful.  Then she was constipated until today when she was finally able to go.  At her doctor’s appointment today, they said her intestinal tract looked normal, which is great considering her 2 surgeries on her intestines shortly after she was born (removing her ascending colon/colostomy and reuniting her colon).  

Analise's new gym equipment-Anything to encourage her to move her arms!!

Analise also had her FIRST physical therapy appointment on Wednesday through CCS (California Children’s Services).  Jerry, the physical therapist, walked Dawn through some new exercises and took several measurements.  It was a relief!!   Usually what we hear is to continue what we are doing, but the only problem is, WE DON'T KNOW WHAT WE'RE DOING.  Jerry will see Analise 1-2 times every week along with OT appointments as well.  

Although Analise still cannot move her arms, she usually has a smile on her face.  She looks at you as if she understands everything you are saying.  

Analise still doesn't like being stretched and will never miss a feeding, but she is a happy girl.  She definitely has an uphill battle, but with the incredible family and friends she has already, she will succeed.  

Analise looking at her Auntie Monika-Thank you Auntie!!!

Also, my sister Monika and Dawn's mom, Annette, have agreed to watch Analise during the week when Dawn goes back to work.  Yeah!! 
We were a little stressed trying to figure out who would be watching her when Dawn returned to work, but we now feel relieved that Analise will be surrounded by family who will provide all the love, attention, and care that she needs.  Thank you!!!

Analise trying to entice her Auntie Monika to pick her up ;-)

Analise met her beautiful new cousin, Chloe (Dawn's sister Victoria had her on December 1).  Chloe's hands and feet at one week were already bigger than Analise's at 4 months, and she was born with a full head of hair.  Analise is jealous. ;-) They were already having competitions too.  Chloe would cry, then when she would stop, Analise would start, and it went back and forth for a while until they both ate and fell asleep.  Congratulations Andrew, Victoria, and Hailey.!! 

Hey!! That's MY Daddy and Mommy!!

Analise's brother and sisters are busy too.  Kyle started lacrosse again.  What a fun game to watch!  Kassandra is busy again with soccer and will hopefully win some games this season.  And Kaley is starting to learn how to drive.  Although on our first experience she didn't really enjoy it and said she didn't want to ever drive again, but hopefully with some practice she will build the confidence that we all want her to have on the road, for all our sakes. ;-)

Dawn returns to work on January 3, and needless to say, she is not very happy about it.  It will be a big adjustment for Dawn and for all of us, but both Analise and Dawn will do great.  I don't go back to work until January 9, so I get a week alone with my baby. Do you think she will let me sleep in every day?

Only 10 more days from today until Christmas, are you ready?  

Good night!
(tomorrow we will add another video)

Video of Analise splashing during her bath

We were finally able to load the video of Analise splashing during her bath.  Enjoy!!

Thanksgiving pictures and update on Analise

First of all, here are some of the pictures we promised from Erik and Dawn's Thanksgiving celebrations (we told you they have big families!!)  ;-)

The week before Thanksgiving: Thanksgiving celebration with Annette, Dawn's mom's side of the family: Great Grandma Thelma, Grandma Annette, Auntie Victoria, and Analise

Analise had her ears pierced last week!!  How about a bottle to help her forget the pain!!

Hailey hugging her cousin Analise to make her feel better after her ears were pierced, awwww!!

Thursday: Thanksgiving celebration with Bill, Dawn's father's side of the family.  Dawn's Aunt Cindy holding Analise while Erik and Dawn ate their Thanksgiving meal.  Erik didn't get a chance to take too many pictures because he spent a lot of time playing with the kids and talking to Analise's Great Grandpa Jim, who was spending his first Thanksgiving in over 60 years without his wife Margrette.

Friday: Thanksgiving celebration with Ed, Erik's Dad's side of the family: Uncle Steve and Auntie Jen, Grandpa Ed, Grandma Sandy, cousin Tyler, Auntie Monika and cousin Isabela, Kassandra, Dawn, Analise, Erik, Kyle, and Kaley

 Auntie Jen (Erik's stepsister) is recovering from surgery.
We all wish her a speedy recovery!!

Saturday: At our Araoz Family Thanksgiving (Erik's Mom's (me ) side of the family):  Here is Abuela with 20 of her 24 great-grandchildren (and there are 2 more on the way!!) (Big sister Kaley is holding Analise)  Abuela loves these big family get-togethers.  All of Abuela's children, grandchildren, great-grandchildren who were in town were part of this celebration... more than 50 of us!!

Analise and Dawn during the Araoz Thanksgiving...Analise was pretending she was eating the all the yummy Cuban food her great-aunts and uncles prepared for this Thanksgiving celebration, that is why she is smiling!!

Dawn and Analise visit with friends Jana, Georgie, and Vlandita.  Vlandita is also doing a great job being Dawn's long-term sub for her class this year. 

Jana

Georgie

Vlandita

We know the posts don't come as often as they used to, but as Erik said, " it sometimes feels like the movie Groundhog Day" and the same things happen every day and we don't want to lose any blog followers.     Just to give you an idea of what typical day in Erik and Dawn's life nowadays consists of:  Analise wakes up around 6:30 or 7am.  Dawn feeds her then gives her her breathing treatment for the bronchiolitis.  Then "usually" she goes back to sleep for a couple more hours (Analise that is, not Dawn ).  Then the routine rotates around: exercises, tummy time, feeding, napping, changing diapers, and wiping her up for the rest of the day.  She usually gets pretty fussy around dinner time, probably because she doesn't eat the same food as the rest of family and probably the most stressful part of their day.  Then she eats around 8pm and falls asleep for a few hours, wakes up around 10 or 11pm and 3 am (Erik and Dawn love that time) and it starts all over again the next day!! 

Analise continues to struggle with congestion and vomiting.  Everyone's prayers are needed to help her overcome this latest challenge and to help her doctors determine the cause of these issues and prescribe the best treatment.  Weight gain has been minimal due to the vomiting, and she is so tiny as it is, we don't want this to continue.  Erik and Dawn are trying a new feeding schedule, feeding her one ounce less of the formula with each feeding, with the same frequency, and the vomiting seems to have decreased. Let's just pray that she was eating too much!!  Analise has an appointment with the gastroenterologist on Friday. 

Despite challenges that would slow most of us down, Analise is thoroughly enjoying not having her casts any longer and is LOVING her baths.  She loves kicking her feet and legs!!  Dawn only gives her a bath every other day, but if Analise is crying before her bath, she relaxes as soon as her feet touch the warm water!!   

Although we have not had the pleasure of seeing this yet, Erik and Dawn have told us that Analise has started to laugh sporadically...we will work on making her laugh more often!!   She is also imitating her 5 month old cousin Shayne's way of complaining by blowing bubbles and "raspberries"!!  Analise, and all of us will miss her cousins, Shayne, Carson, and Tyler, and her Auntie Ashley and Uncle J.B., who just moved to San Antonio, Texas...Thank you God for Skype!!!

Analise will be having a new cousin, probably tonight or tomorrow!!  Dawn's sister Victoria is in the hospital tonight and she and her husband Andrew will soon welcome their second daughter, Chloe.

Big thanks to Erik and Dawn's friend Donny.  Donny's father owns an electrical company called US Electric Co. out of Murietta and they donated their time, expertise, and materials installing the electrical wiring and light switches in Analise's bedroom, as well as the ceiling fan that Erik never had a chance to install after Analise was born.  THANK YOU!!!

Suzie,Thelma, Dawn, Analise, Debbie, Jack and Erik

Also, one more thank you to Debbie and Jack Freeman, Thelma Jenkins (Analise's great grandma) and Suzie Titus from Prudential in Cerritos.  They stopped by Erik and Dawn's house last week and delivered an amazing check with the proceeds from their fundraiser.  Analise now has a generous emergency account that is waiting to be used towards the expenses that Erik and Dawn will continue to have, associated with Analise's medical condition, medical treatment,  and travel to the Philadelphia Shriners.



 On a sad note, Analise's roommate in the Kaiser Sunset NICU passed away a few days ago.  Erik and Dawn had befriended little Courtney's parents after their long days and nights together with their children in the NICU.  Courtney sadly passed away from congestive heart failure this past Sunday.

The difficulties Erik and Dawn have been enduring, in no way compare to the loss that their friends, Jenna and Joe, have suffered.  Erik and Dawn, and all of us, send our heartfelt love and prayers to Courtney's parents, Jenna and Joe, and her big brother Dylan.

Erik and Dawn are heartbroken for their friends and are holding Analise just a little bit closer, knowing how blessed they are to have her!!