Analise is going to "set the world on fire"

Not being avid movie-goers, we finally got around to watching "Soul Surfer", the true story of Bethany Hamilton, another overachiever (just like our Analise will be) who would not let the loss of her arm during a shark attack stop her from realizing her dream of becoming a professional surfer.  As we watched this touching, heart-warming, inspiring story, we were so profoundly struck by the extraordinary influence this young woman has had on countless people as a result of her courage and her faith.

We know Bethany and her family asked God often "how could you let this happen to such a great kid?", just as all of us who love Analise so much asked God, as well.  And just as Bethany's family knew God had a reason, a purpose and a plan for Bethany, we also know and are excited to be a part of His great plan for Analise.

In her short life we have seen how Analise has touched so many lives, inspired so much prayer and renewed faith, and brought so many people together in support of Erik, Dawn, Analise, and her sisters and brother.  If this is what He has done in 10 weeks we can hardly wait to see what He has planned for Analise and her family in their future.

The final song, "Set the World on Fire", closes the movie with such a powerful message that anything is possible with God.  We have added the song to Analise's playlist on her blog and included the lyrics below.

And... if you haven't seen the movie, you can borrow our copy!!   :)

"Set The World On Fire"

I wanna set the world on fire
Until it's burning bright for You
It's everything that I desire
Can I be the one You use?

[CHORUS]
I, I am small but
You, You are big enough
I, I am weak but
You, You are strong enough to
Take my dreams
Come and give them wings
Lord with You
Nothing I can't do
Nothing I can't do

I wanna feed the hungry children
And reach across the farthest land
And tell the broken there is healing
And mercy in the Father's hands

[CHORUS]

Take my dreams
Come and give them wings
Lord with You
Nothing I can't do
Nothing I can't do
My hands my feet
My everything
My life, my love
Lord, use me

I wanna set the world on fire
I wanna set the world on fire, yeah

Take my dreams
Come and give them wings
Lord with You
Nothing I can't do
Take my dreams
Come and give them wings
Lord with You
There's nothing I can't do
Nothing I can't do

I'm gonna set the world on fire
Set the world on fire

Request for your prayers

After wiping tears of joy while we watched yesterday's video (over and over again) with Erik and Dawn's latest idea of how to help Analise strengthen her arms and legs... we were able to post Erik and Dawn's comments and pictures.  We meant to add our comment to yesterday's post, but in addition to having difficulty posting the video, we also had to deal with a virus with our computer and it just got to be too late...we thought Macs didn't get viruses?!?!?!?    :(

So let's try this again today:
Erik and Dawn are probably having to make the most difficult decision thus far about their baby, our Sweet Analise.  We can't even imagine the anguish they are going through at this time.  The decisions they've had to make were difficult enough when Analise was first born with arthrogryposis, the intestine problems and surgeries that followed, the arm/hand problems,  and the club feet and knee problems, etc, and it's only been two and a half months!!

The decision they are currently having make is even more difficult than the previous ones, considering the fact that both doctors that have seen Analise for the knee problem have opposing opinions!!

In addition to gathering as much information as possible so that they can make an informed decision, as Erik and Dawn have been diligently doing, during times like this is when we must rely on our faith and prayer to help us in making the best decision.

We know we can count on all of you to keep Erik and Dawn in your prayers:

• To give them comfort during this challenging time
• To help Erik and Dawn be of one heart and mind in their decision-making process
• To give them wisdom and discernment so that they are able to make the best decision for their baby, our Sweet Analise.
• and
• To give them peace as they move forward with their decision.

We can't wait to see what Erik and Dawn's next idea will be to help Analise exercise her arms and legs, we loved that video!!!   ;-)

Weeks 10-11... Achilles tenotomy today, tough decisions ahead

The Analise workout video
(remember to pause the playlist when you watch the video)

From Erik:

"The weeks seem to be getting busier and busier.  I feel like a juggler trying to break the world record.  Super busy at home and school.  But we take one day at a time and tackle the things we need to do for that day, good advice for Analise too.  Besides the soccer practices, tryouts, games, sleepovers, birthday parties, cleaning indoors and outdoors, doctor appointments, meetings and emails with doctors, grocery shopping, report cards, conferences, setting rat traps (I'll tell you that story later, yikes), hair cutting, and laundry, oh so much laundry, it was a pretty relaxing week.  Ok, I'm done venting and now I'm tired again.

Kassandra turned 11 this week which means......I'm getting old.  She had a few parties with friends and family.  Analise was pretty cranky this week.  It's very difficult to know what's bothering her.  The list of things it could possibly be is so long.  Is it her arms, legs, reflux, stomach, dirty diaper or any of the other 1,000 things that newborns cry over?  As parents, we don't want time to fly, because it will, but maybe this difficult newborn stage can be just a little bit shorter.  I know when she's turning 18 though I'll be crying "where did the time go?"  

Analise had her Achilles tenotomy today.  Dr. Hurley felt that was necessary in the steps of her club foot correction.  Tony helped take off the old casts and her feet looked great.  

We weighed her and she weighed 9 pounds, 4 ounces.  She only gained 2 ounces this week, but we are now letting her sleep as much as she can at night and she was spitting up a little more than usual this week.  

After the casts were removed, we took Analise up to the third floor to have her Achilles tendons cut to allow for lengthening.  Apparently, the tendons will grow back over time and give her the extension she was lacking.  This doesn't happen for adults (sorry Aunt Anaivett).  It is a minor procedure with no anesthesia, actually no pain medicine at all.  They make a small incision on the back of the ankle and cut the achilles tendon.  Then they stretch the feet upward and recast.  Parents are not allowed in the operating room during the procedure, so it is a little nerve racking, especially since Analise has to endure the pain all by herself.  I know she won't remember it, but "ouch!"  

Dr. Hurley said her feet continue to correct very nicely, much nicer than other arthrogryposis children she has corrected.  She still has a few more weeks of casts, and then we move to braces and special boots.

As for the decision of the lateral hamstring tendon tenotomy, we still don't know what we are going to do.  We were leaning very heavily towards taking her back to Dr. van Bosse in Philadelphia, and still may, to have him do the surgery that he said was necessary for proper correction of her "knock knees."  

But Dr. Hurley adamantly opposes that decision.  She again explained that cutting those tendons would be the worst thing for her.  She would never do that surgery on a newborn like Analise.  She said that not only did she disagree with how tight the hamstrings were, she said that if they were to cut those tendons, they could retract like a stretched rubber band being cut.  If this happened, she said it would be very unlikely that the tendons would grow back together and then Analise could possibly lose the function of those important tendons.  

I have been emailing Dr. van Bosse and relaying the information that both doctors are giving me.  Dr. van Bosse said that he has rarely seen hamstrings as tight as Analise's.  He said he usually does the tenotomy on these tendons if they are tight, but doesn't have another case to compare to where he didn't perform the procedure.  I am still in the process of getting the most information I can, so we can make the best decision for Analise.  Stay tuned!  

We have a meeting with several people from the school district this Friday.  If they think she is eligible, they can try to get her accepted into Regional Center.  If that happens, then Analise will qualify for services from Social Services." 

The many faces of Analise:

After casts were removed today...looking good!!

So much love for Analise!!!

Thelma Jenkins is Dawn's grandmother.  She has been very fortunate to belong to a real estate office with a very compassionate manager/owner, Debbie Freeman, who after hearing about Analise and talking with Thelma about a fund raiser, has offered to hold one at her home.  Thelma feels that this is one way she can show her love for her great granddaughter, and support for Dawn and Erik.  She realizes that in addition to medical bills, Dawn and Erik will have many more added expenses related to Analise's arthrogryposis treatment,  which may include lost wages, travel expenses, 

specialized child care once Dawn needs to go back to work, etc.  

The Prudential California Real Estate office in Cerritos

has been very gracious in hosting the fund raiser below to help with these expenses. 

OPEN HOUSE AND FUNDRAISER FOR ANALISE ROSE

This event is open to everyone and will be held on:

 Saturday, November 12, from 2:00pm-5:00pm at

 Debbie Freeman's Home

9109 Cardinal, Fountain Valley, CA 92708 

In case you have difficulty reading the flyer below, the way this fundraiser is organized is that one purchases tickets for $25 per person (or any amount you would like to gift). 

If you plan on attending, please RSVP so that they know how many people they can expect and they can have enough yummy treats for everyone :)

Your gifts would be made payable to Dawn Persek.  

If you cannot attend the event but would still like to donate you could mail your gift to:

 Prudential California Realty, 

Attn: Debbie Freeman

11306 E. 183rd St.

Cerritos, CA 90703 

Any donation is a gift and is not tax deductible. 

 If you have any questions, or to RSVP, please call Debbie Freeman at 

949-795-0059 or 562-860-2443 

Analise, Erik and Dawn are SOOOO blessed to have so many people 

loving, supporting, and praying for them...PRAISE GOD!!!

Analise returns to Dr. Hurley today-A message from Erik

From Erik:

"Analise had a pretty busy 9th week.  Along with that little trip to Philadelphia, she went to her first wedding on Friday.  Her auntie Valerie married Analise's new uncle, Robert.  Congratulations!!  She had fun on the dance floor with Valerie, but only for one song because we didn't want her getting too crazy out there.  While we were at the wedding, a few people that we have never met came up to us and told us about how they were following Analise's progress through the blog and thinking about her.  They had found out through people posting on Facebook.  It is truly amazing to know how much support Analise has out there.  

On Saturday Analise went to a barbecue with Dawn's side of the family while I took the kids to their soccer games.  Sometimes, I think I should just put a "taxi" sign on the top of my car, at least then I could get some money for all of that driving around I do.  These kids better appreciate it some day or we'll make them drive us to all of our doctor's appointments when we're older.  :)

On Sunday, Kassandra was lucky enough to have a halftime scrimmage on the LA Galaxy soccer field at the Home Depot Center and we were given tickets so we could all go.  Dawn, Kaley, Kyle, Katrina (my sister), Dan (my cousin), and I got to watch her play.  And no, I'm sorry, there are no David Beckham pictures.  Abuelita, Grandpa Richard, and Abuela got to babysit Analise for the second time.  This was Dawn's second outing and she decided she better start easing her way out of the house a little bit at a time, so when the time comes to go back to work, hopefully it won't be so hard.  She's aiming for the beginning of December or the start of January.

Today Analise is 10 weeks old.  WOW!  She was so excited today.  Dawn said she wouldn't stop smiling.  She celebrated by getting new casts with Dr. Hurley.  Dawn had to go to the appointment alone because I was not able to take off work.  But at the last minute, my incredible principal allowed me to leave a little bit before my lunch and another teacher offered to watch my class.  Thank you so much Sandra and Nancy!! 


I drove all the way to the appointment to surprise Dawn and Analise, and when I got there, they were just finishing up.  Next time I will have to drive 90 mph:)  It was good though because I still got to talk with Dr. Hurley.  Dawn said that Analise was so calm with Tony again, and even fell asleep when they put on the new casts.  Yeah, back to the "pretty" casts.  Those other 900 lb. ugly plaster casts were a pain.  And they were actually rubbing on her feet a little bit and causing irritation, so it was good that they came off.  

So here comes the dilemma.  Back in Philly, Dr. van Bosse, the lower extremity specialist, suggested clipping her outside hamstring tendons so that her knees would release more to the inside.  

• What's happening is Analise has "knee knockers," when her legs are straight, the front of her knees are actually out to the side.  It looks like her legs are straight, but when you rotate the front of the knee to the front, the bottom of her legs go out.  When she extends her knee, the outer hamstring tendon is very tight, causing the tibia, fibula and foot to go outward, hence "knee knockers."  

The idea from Dr. van Bosse in Philly was to maybe put Analise under anesthesia and surgically clip both the Achilles tendon (tenotomy) and hamstring tendons at the same time.  Dr. Hurley didn't really agree with Dr. van Bosse's thoughts, but said she would have to see his notes.  She believes the Achilles tenotomy should be done next week.  That procedure is done right there in the office and does not require putting Analise under any anesthesia.  Dr. Hurley doesn't feel like the hamstrings are tight and feels that we should wait until she gets closer to walking, before performing any surgeries.  She also doesn't want to put Analise under anesthesia if she doesn't have to due to all of the complications, especially with a newborn with arthrogryposis.  It seems like her thoughts are more along the thoughts of Dr. Zlotolow, the upper extremity specialist from Philly.  "Wait, and let Analise show us what she needs." Although, Dr. Zlotolow also said the treatment plan for the lower extremities is typically addressed before the treatment plan for the upper extremities.  

When I explained fully what Dr. van Bosse wanted to do, Dr. Hurley was a little more open to seeing what he had to say, but she still wanted to talk to him and suggested to wait.  It puts us in a very hard position.  

• Do we get the surgery with the specialist from Philly, put Analise under anesthesia, and try to correct the problem sooner?  or 
• Do we wait, let Analise show us what she needs, and do the surgery, if she needs it, later down the line?  We feel like this decision could affect her lower extremities for the rest of her life.  
• SO HARD!!!  

At this point, we are going to wait for Dr. van Bosse to send his notes and talk with Dr. Hurley.  I am going to send him an email to remind him to contact her.  When we left last week, he and some of his colleagues were leaving for their annual trip to Puerto Rico to work with arthrogryposis patients down there.  He was pretty busy and probably forgot to contact her.  More waiting.

And guess what our little porker weighs now?  9 pounds, 2 ounces.  That's 10 oz. since last Monday.  Maybe Dawn can let her sleep longer rather than waking her up every 3 hours during the night to feed her.  Thank you baby, I Love you!! That formula and Mommy's diligent feeding schedule must be chunking her up!!

A special thanks to Abuelita (my mom) and Rich (my step-dad) for everything you guys did for us in Philadelphia, and well, every day.  We love you!  And big thanks to everyone else out there.  We appreciate everything that everyone is doing for us.  If we don't thank you enough, we're sorry, but we are really grateful for our incredible family and friends.  We are doing well and it's because of all of you!

Kaley, Kyle, and Kassandra love their little sister so much.  The minute they get home, they run to wash their hands and put antiseptic lotion on so they can hold Analise.  I think at one point, Kaley didn't put Analise down for 2 hours while she slept.  They are helpful with her (but not with anything else around the house :)  ) and Analise definitely knows when they are around.  And a BIG HAPPY BIRTHDAY SHOUTOUT TO Kassandra.  She turns the big 11 tomorrow, October 18!! She also shares a birthday with Analise's great grandpa, Jim Morlock, Happy Birthday!!  We love you !!!"

Auntie Valerie's wedding day, on the dance floor

Love those baths!!  These casts make the rest of me look small.

Family time at the Galaxy Game 

Stylin with the leg warmers daddy's old student Maya and her mom found
 to dress up my casts

Tummy time

Today I am 10 weeks old!!
Time is flying by!!!

Before cast removal... wearing the dress that
our friend Silvia designed especially for Analise...

...after cast removal

I'm pooped!!
How much longer with these casts????

Did YOU see it???

First of all, we would like to commend Erik for really doing a
tremendous job documenting Analise's Journey through pictures!!!

Secondly, some of you have already noticed this;
Erik's Aunt, Anaivett commented on last night's post,
 our neighbor Gay mentioned it tonight, but...

We DID NOT notice it when we were taking the pictures!!!

We DID NOT notice it until AFTER we had published yesterday's post!!! 

WHAT ARE WE TALKING ABOUT?????

If you look at the pictures of Analise on the stairs of the Philadelphia Museum of Art, especially on the last picture with Erik holding Analise, you may notice someone on Erik's left...looking at him and Analise...who is it, you ask??...

It is Jesus. . . 

Covering Analise, Erik, and Dawn with His love and protective gaze, 

just as he has been doing since He blessed us with Sweet Analise!!!

"Rembrandt and the Face of Jesus" exhibit at the Philadelphia Museum of Art, "Supper at Emmaus"

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

Analise hits Philly!!

Analise handled flying like a seasoned traveler. Everything went like clockwork; flights pretty much on time, we made it in time to catch the second flight, and the room was ready when we arrived. Analise only fussed a little bit today when she was hungry, wet, or had a dirty diaper, but because she cries so softly, she really didn't bother anyone. She enjoyed watching the tv screen on the seat and all the flight attendants fell in love with her!! Since the planes were not full, Erik and Dawn were able to put Analise's car seat between them and have a row of seats all to themselves! And thanks to Continental Careforce, their checked bag flew for free!!

Before checking in to the hotel, we ate cheesesteak sandwiches at Sonny's and they exceeded our expectations!!

We are unable to figure out a way to add pictures to the post with our iPad, so we will have to add the photos when we get home.

It is bedtime for Analise now... and us, it has been a long day!!

Day 60-Tomorrow is Analise's first airplane ride to Philly, and finally her evaluation at the Philadelphia Shriners Hospital!!

Tomorrow, Analise will enjoy her first airplane ride to Philadelphia. . .well, we are praying that Analise (and everyone else on the plane) WILL ENJOY Analise's first airplane ride!!   ;-)


This will be followed by Philly Cheesesteak Sandwiches at "Sonny's" for dinner soon after the plane lands, followed by some rest and relaxation on Sunday in downtown Philadelphia, and maybe even a visit to the Liberty Bell, just minutes from the hotel (just a great bonus of this trip ;-)  ).


On Monday, Analise will have her first evaluations with the orthopedic surgeons at Shriners Hospital, Philadelphia.   Analise will see at least two doctors:

• Dr. Zlotolow, who specializes in upper extremities (arms and hands)  

         and

• Dr. von Bosse who specializes in lower extremities (hips, legs, feet)  (Dr. von Bosse is the doctor that was on the video on the post from August 21,   http://vimeo.com/24626314 )  If you watch the video, you will see what a dedicated, compassionate doctor Dr. van Bosse is.

These doctors specialize in arthrogryposis and have treated numerous children with arthrogryposis from all over the world.

From what we have been told, this will be an all day experience,

BUT THIS IS WHAT WE HAVE BEEN WAITING FOR!!  

Please keep everyone in your prayers the next few days, so that God will provide a safe and pleasant flight,  followed by a thorough evaluation at Shriners Hospital, a hopeful prognosis,  a clear and comprehensive treatment plan, and hopefully a new set of splints and/or casts for Analise.


Yeah. . . we know that this is asking a lot. . .

but WE KNOW that God WILL provide. . .

THIS IS OUR PRAYER!!!

Post from Tuesday, October 4 for Days: 54-58 New casts, new allergy??, getting ready for Philly

From Erik and Dawn:

"Well it's been a while since our last post, but really, nothing much has happened.  

Analise is still trying to keep her food down.  Occasionally she spits up after feeding because she HATES burping.  The Zantac seems to be keeping the acid down, but the milk didn't get the same message.  

It is also becoming more difficult for Dawn to breastfeed.  Analise can't ever seem to get completely comfortable or relaxed because of the casts.  I wonder why????  So Dawn is probably going to continue pumping to produce milk and then give her the milk in the bottle because she can relax and drink from the bottle with less fussing.  Dawn is also going to try to feed Analise with formula several times during the day to make sure she is eating enough.  Any suggestions on formula?  

Today was the first day trying formula, Enfamil Premium for Newborns, and within a couple hours, Analise broke out in a rash.  Seriously, we wonder if anything will ever go smoothly with her!?!? Because we were a little concerned, we took her to the pediatrician and they said it could be the formula, but they also said the rash could have been caused by the outfit she was wearing.  We would have to do another test with the formula in a couple of days.  If the rash continues with the formula, we may need to try one that is pre-digested.  

We are also going to see the neonatologist on Thursday to answer a couple of questions we still have about eating, weight gain, reflux, and shots.  

Analise saw the OT.  She showed Dawn some more exercises for her.  One of the exercises is to put Analise on an exercise ball on her stomach with her arms up, almost as if she was crawling.  She fusses for a little bit, but then sucks away on her pacifier.  There isn't any new movement in her arms.  We are still waiting, but it WILL happen!!!

Analise was denied at Regional Center but referred to a Low Incidence program at the school district.  We have a meeting with several people from the district at our house on October 28.  One of the specialists for the program works at my school and told me not to worry, Analise would be taken care of.  She also said she would probably be referred back to Regional Center after their evaluation.  We are still working on the Medi-Cal waiver.  How many paycheck stubs does a program need?!?!  CCS (California Children's Services) needs to evaluate her in San Bernardino, and then we should get services through them also.

Abuela, Marti (my mom) and Rich (my stepdad) babysat for the first time on Sunday night.  Dawn and I got drunk at Chili's.  Not really. . .we each had one beer (Dawn to help produce more breast milk, and me for moral support, come on people!!).  It was our first time going out by ourselves and leaving Analise since the hospital.  She didn't even know we were gone, she slept the entire 45 minutes. :)

Analise also had her casts changed today.  These are her fourth casts in 5 weeks.  Luckily, we hunted down Tony (the cast removal expert).  I hope he wasn't mad that we came to his house.  Just kidding.  What a relief, today went so smoothly.  Tony secretly used glow in the dark casts too, he didn't want Dr. Hurley to know because she doesn't really believe in different colored casts.  Dr. Hurley couldn't believe how strong her legs were (I think the leg workouts with the casts are helping) and how much flexion she had in her knees.  She was excited for us for our trip to Philly and hoped all of our questions would be answered.  She also reiterated that Shriners can do whatever is necessary to evaluate Analise.  We also weighed her, are you ready?   Well, keep reading until the end and I'll tell you.  Come on, it's me, Erik, you know I have to tease a little.

We leave for Philly this Saturday.  We are definitely a little nervous to travel on a plane for 5 hours with a 2 month old.  And the amount of stuff we will need to bring, holy cow.  When they ask us if we will be checking any luggage, I will just point to the 18 suitcases I am dragging behind me and say, "Yes!"  We are also very excited though.  We will meet doctors that have seen hundreds of kids with this condition.  We will hopefully get some of our questions answered.  

But here is what I would like you to do:  I know many of you have questions too.  Maybe we already know the answers and maybe we don't.  We would love to hear your questions though.  I will put them all together and ask as many as I can.  Then I will post the answers when we get back.  So ask your questions as a comment on the blog, or you can email, text, or Facebook us.  No question is a bad question and we won't get offended in any way.  So ask away.  Knowledge is power!

Alright, are you ready for her weight?  She was 7 lbs. 8 oz. last week, and today. . . with Dawn doing everything she could to fatten her up. . . Analise weighed 8 lbs. 3 oz!!!  That means she gained 11 oz. in 8 days.  Yeahhh!!!

Looking forward to your questions!!"

We would also like to ask all of you to keep Erik, Dawn, and Analise in your prayers this weekend and especially on Monday, so that they will  have a smooth and safe trip, ask all the questions they need answered, and are able to absolutely maximize their time at Shriners with the arthrogryposis specialists. . . FINALLY!

Day 58

Day 55-Mommy's little girl

Day 55-Analise's first visit to Erik and Dawn's favorite store. . . Sam's Club
"Finally. . . I get to go shopping!!"

Day 56-with Abuela and cousin Bela

Erik and Dawn's new way to stimulate/stretch Analise's hands. . .  with Kaley's play dough

Day 56

Day 58-After casts were removed, looking good!!

Day 58-with fourth set of casts. . . "I'm getting tired of this"