Days 51, 52, and 53-Analise's beautiful smile, her first pants, tummy time, and visitors

What a beautiful smile. . .
this picture made our day!!!

Analise has her Mommy's blue eyes!!

From Erik and Dawn:

Day 51, Tuesday: 

Our friend Leah brought food from her and husband Brian's fabulous Mexican restaurant, Esther's, in Yorba Linda. Delicious!  

Leah

Analise also was smiling so much on Tuesday and Dawn caught it on camera (pictures above)

Also, Analise wears her first pair of pants. 

Day 51-My first pants!!

It will be chilly in Philly next week!!

Day 52, Wednesday:  

Tummy time

Tummy time and chilling with big brother Kyle.

Big Brother Kyle massaging Analise's hands

Day 53, Thursday: 
Great Grandpa Jim Morlock couldn't wait to see Analise again so he made Grandma Bonny and Grandpa Bill bring him over.

. . . with my pearls and Jenni's headband

Day 53-Dressed up for company. . .

Great Grandpa Jim, Grandma Bonny, and Grandpa Bill

Post from Monday, September 26: Day 50-New casts, visit with Dr. Hurley

Our Sweet Analise. . .

. . . you are such a blessing!!

From Erik and Dawn:

"Today we had an appointment with Dr. Hurley.  Analise's casts were supposed to be changed last week, however since Dr. Hurley was on vacation last week, Analise kept her casts on a little longer than usual.  And as usual, it was as nerve racking as it was the last time.  We didn't get the veteran Tony to take them off this time, which was a little scary because he was so good.  The new tech looked a little nervous, especially with a 7 week old kicking, screaming, and crying the entire time.  

Let's just say it was a pretty intense 20 minutes of cast removal.  He did a good job, but had to go over it several times with the vibrating saw before it came off.  He scratched her 2 times on the right foot, but it wasn't too bad and we were told that it probably would happen at some point because it is so difficult.  How many more times do we have to do this?  

Lucky it's at a hospital each time because we might have a heart attack!!

We then weighed her without the casts, and are you ready?    Drum rrrrrroooooollllllllllllll!  Not much weight gain, 7 lbs. 8 oz.  When we went to her first pediatrician appt. at a little over 3 weeks old, she weighed 7 lbs. 1.8 oz.  We are calling the neonatologist and the pediatrician tomorrow to see what we should do.  She eats every 2-3 hours and around 3 ounces each time.  We are thinking we might have to supplement with formula.  

Dr. Hurley said her feet continue to look great and that she was amazed how strong her legs were.  She said her knees were very flexible.  Each time she puts a new cast, she turns her feet out even more.  Eventually, she will cut the Achilles tendon to allow that tendon to stretch so her ankle can move more freely.  


Dr. Hurley also told us to put her on her stomach with her arms in an upward position to help stretch her upper body muscles and her neck.  She put Analise on her stomach, and surprisingly, she did very well with hardly any crying.  

We had a million questions again and here are some of the answers:

• Is it alright for Analise to go on the plane to Philadelphia? 
• It's no problem and the casts are fine.  

• When we are in Philadelphia, is there anything the doctors can or can't do with Analise?  
• The doctors can change the casts, put new ones, whatever they need to do.

• Can we give him your email/phone number so the two of you can collaborate?  
• Sure, he can email me through POSNA.

• I asked her what she meant about not using ultrasounds because they did one for her hips and that was ok?
• Never use ultrasound therapy for the muscles, this can interfere with the growth.  

• Will they do ultrasounds to see what muscles are there?  
• You know which muscles are there by movement.  If she brings her forearm to her mouth, she has biceps.  If she can make her arms straight from a bent position, she has triceps.

• Is Analise going to need muscle transfers in the future?  
• We will have to wait and see. Nothing will happen now or anytime soon.  If there is a muscle transfer, they take it from other working muscles.  Therefore, they take a good muscle and use it somewhere else.  For example, if the triceps are good, they may take that and move it to the biceps, but then she loses triceps motion.  However, that may be beneficial on one arm, for feeding purposes where the bicep is needed.

I asked a few other questions, but the bottom line for many of the questions is "we just don't know!"  It is a big waiting game and every kid is different.  


We don't know if muscles are there, if nerves are there or if more will grow, if there is are problems with the connections from the spine.  We just don't know.  


Maybe in Philadelphia, we may learn a few more answers, but for the most part, we will always be left with many questions.  


She did mention, in a round about sort of way, that she did do some research and now knew who we were going to see.  She said she hoped we would get some more answers from someone who maybe had more current research.

• The biggest question we had, and probably the same question that many of you have is,  do you think her arms will move?  
• Her answer, and she said we probably don't want to hear this, but she will probably have very limited movement of her arms.  We just don't know though.  She said our hope is that she has enough movement in her arms to feed herself and clean herself in the bathroom.  She said she actually had good flexion in her elbows, which was a good sign, but only time, therapy, and possible surgeries would let us know how much movement she would have.

So, as we drove home from the hospital, Dawn and I discussed the appointment as we always do.  We said, as different and difficult as this condition is for everyone to accept, it is weird how it now seems very normal for us.  We don't know what the future holds for Analise.  We don't know if she will be a completely independent girl, teenager, and woman as she gets older?  But that is our hope and we do know that we will NEVER stop looking out for her best interests.  We will continue to do everything in our power to help her limbs function properly.  We will massage, rub, introduce her to different textures, and stretch her muscles FOREVER.  We hope that someday she can hold a bottle, feed herself, grab a ball, pull our hair, pull herself up in her crib, open doors, and do every other little thing that babies and toddlers do.  And as I have said from day 1, Analise is going to be that rare case, where doctors from all around will wonder why she was so successful.   Analise is our precious baby and we will never stop fighting for her.  We love you Analise!!  XOXO"

And WE (everyone who knows and loves Analise, 
Erik, Dawn, Kaley, Kyle, & Kassandra)

want you to know that 

WE will be here for ALL OF YOU, 

for WHATEVER you need...

and our prayers will also continue...
FOREVER !!!!

Day 50-after casts were removed

Ouch... :-(  but looking better!!

I like this tummy time!!

After all that . . . still smiling!!

Day 50-New casts. . .

. . .Here we go again!!

Days 46-49-Family and friends

Day 46- This swing is so relaxing!!

Analise continues to receive a steady stream of visitors and she has a way of capturing everyone's heart!!

Catch up with what Analise has been up to by checking out the photos below.

Tomorrow Analise will be going back to Dr. Hurley, the orthopedic surgeon, to have her casts changed.  Although she is supposed to have her casts changed weekly, she has had these casts on for two weeks now because Dr. Hurley was out of town last week.  

We are sure Analise can't hardly wait to get those casts off, after all...she is a growing girl!!

We are sure Erik and Dawn will have many questions for Dr. Hurley again, and they will also be letting her know that Analise will be going to Philadelphia in a couple of weeks.   Analise will also have her second OT appointment this week.

Here is a recap of the last few days:

• Georgie, Dawn's friend from work, visited with Analise for the first time on Saturday.  
• Today, the girls (Dawn, Kaley, Kassandra, and Analise) went to  Dawn's sister Victoria's baby shower.  Dawn's Aunt Christine and Valerie, Dawn's step-sister, held Analise for the first time.  Aunt Christine's daughter Jennifer, Great Grandma Thelma, and Grandma Annette couldn't get enough of our Sweet Analise at the baby shower.
• After the baby shower, we had a small pot luck dinner with Abuela, Erik's Aunt and Uncle, Carmen and Robert, and Erik's Aunt Beverly, who visited Analise for the first time, and Auntie Monika, who was finally able to hold Analise.  

Erik and Dawn said that Analise had a very mild cough yesterday and today, so let's make sure that any visitors are healthy, healthy, healthy!!  Erik's cousin Zoara has been dying to meet Analise but was unable to do so today because her son has been sick recently.  Thank you Zoara for your consideration!!

Day 46-Analise happy to be wearing the headband Erik's cousin Jenni made especially for her!!

Brother Kyle

Sister Kaley 

Day 48-Georgie

Sister Kassandra

Day 48-Just hanging with my Papa

Day 48- Analise

Day 49-Ready for my first baby shower...well actually...my second baby shower
 ;-)

Day 49-Victoria

Day 49-Jennifer, Great Grandma Thelma, 
Grandma Annette and Christine

Day 49-Valerie

Day 49-Christine

Day 49-Carmen

Day 49-Robert 

Day 49-Auntie Monika

Day 49-Bev

Day 49-Abuela

Day 45: School and soccer community, family and friends rally around Analise at Chick-fil-A

Day 45-Analise thought she would dress up for tonight's event

I wonder who will be there tonight??

Tonight at Chick-fil-A in Corona we witnessed an extraordinary outpouring of love and support for, Erik, Dawn, Kaley, Kyle, Kassandra, and Analise.  The lines were out the door as countless friends and family gathered to eat "CHIKIN", meet our Sweet Analise (yes she is smaller in person, isn't she??  ;-)  ), and share their good wishes with Erik and Dawn.  It was also great for Erik and Dawn to have a night out with friends, something they enjoy so much, but have had little time for lately.

While "eavesdropping" on your conversations with Erik and Dawn, it was so wonderful to hear your very sincere prayers, offers of support, and affection for Erik, Dawn and their family.  That is a medicine for their souls that no doctor can prescribe!!  We know that Erik and Dawn were touched beyond words by your kindness and generosity.

You will notice there are no pictures of the crowds...when we arrived we were so blown away with the turnout, we became so immersed in the excitement of the event, that we simply forgot to take pictures!!  We noticed some of you taking videos and pictures tonight, so if you could send some of them to us, that would be awesome!!

Below is Erik and Dawn's message to all of you:

"INCREDIBLE!  That is the word that comes to mind when we think of tonight.  It was truly incredible how many people came out to support our family.  It was so neat to see you all.  

From the bottom of our hearts, THANK YOU!!  

Without the support from our family and friends, we don't know what we would have done.  We are sorry we didn't get to visit more with everyone.  Analise is so loved already, I think that is why she was so calm tonight, she was among great friends and family.  

Thank you so much for the encouraging words you had for us tonight.  Thank you for following the blog too.  

Chick-Fil-A was remarkable!!  They handled the chaos incredibly well.  Thank you for supporting our daughter.  

Kim Tyler, thank you for organizing this event tonight.  You are awesome!!  Michelle Fox, Heather Kaplanek, Kaley, Kyle, and Kassandra, thank you for your time tonight.  Love ya!

Analise has a very long journey ahead of her.   It will be difficult and there will be many obstacles along the way.  But as we always tell everyone, she WILL be successful!  She will succeed because of the incredible support system she has.  

THANK YOU!!

Much love,

Erik, Dawn, Kaley, Kyle, Kassandra, and Analise"

Thank you everyone!!
I made lots of new friends tonight!!

Proud and very grateful  Mommy and Papa

Spin the Wheel for Analise

Thank you Chick-fil-A and Kim for a wonderful night and  all  your  very much appreciated hard work!!!

Day 44: First therapy appointment at Kaiser

Today's appointment at Kaiser ended up being with an occupational therapist, not a physical therapist. Analise will also see the physical therapist at Kaiser once her leg casts are removed.   


The Occupational Therapist will be working on Analise's range of motion and fine motor skills of her hands and arms.  This OT said that she treated a boy with Arthrogryposis from the time he was a baby until he was about 5 years old.  According to her, that boy has since graduated from college and is a very bright young man.  The OT is also is a lactation consultant, so she was able to provide some advice about feeding, burping, and bottles.  She recommended Dr. Brown's bottles, which help with colic and gas.  


Today's appointment was for an evaluation only and measurements were taken of Analise's arms and hands passive range of motion.  The report from today's evaluation will be available at the next appointment.  


The OT did not allow video taping during the session, stating that she would have to obtain authorization from her supervisor, and that she thought it was Kaiser's policy to not allow taping of any of the therapy sessions.   


The therapist recommended continuing with the exercises that Erik and Dawn have been doing, and demonstrated some exercises for Analise's neck.  Analise likes to extend her head back, probably because of her reflux, but she sometimes also likes to sleep with her head in that position.  The OT said she will provide more exercise recommendations for her arms, hands, and neck at the next appointment.  


Analise will have therapy appointments once a week with Kaiser.  The OT said that Erik and Dawn must have been doing a great job with their daily exercises, because of the gains that Analise has had in her joint movements.  


Watching Dawn interact with Analise is a beautiful thing.  She is so loving, patient, and gentle with her.  When the OT was giving suggestions on how to burp Analise, she realized that Dawn has tried most of the methods that are recommended with reflux and burping and what Dawn is doing is what works best with Analise.  Even with a simple thing as giving the pacifier to Analise when she is crying, Dawn has a technique where she caresses Analise's chin and face while gently placing the pacifier in her mouth, that immediately calms Analise down!!  We are so blessed to have such an amazing Mommy for our Sweet Analise!!  


Don't forget tomorrow's event at Chick-fil-A, from 3pm-8pm, see you there!!

Day 44-See you tomorrow!!

Day 43: Erik's first day back at work

From Erik:

"Today was my first day back to work after taking 6 weeks off.  Needless to say, it was a little bit difficult to get back into the swing of things, but that will take time.  And I think Dawn accidentally shrank all of my clothes because they don't fit as well as they did before. ;-) 

Day 43: Back to school day

This is my 15th year of teaching and today felt like day 1 of my first year.  I probably looked like that too, so I kind of stayed to myself for most of the day.  When I walked into the room, there was a humongous poster saying "Welcome Back" with balloons and a few gifts.  

I met my students for the first time and there definitely was excitement in the air from all of us.  I have a great class, a little (actually a lot) talkative, but I hope that subsides.  My substitute teacher did such an amazing job with my kiddos and I want to say THANK YOU Amy, I got lucky having you taking care of my class.  Going back today made me realize how much I LOVE teaching and the tremendous opportunity I have to change lives.  

As my principal (Nancy, the greatest principal I have ever worked for) always says, I am truly blessed to work at such a great school with such great friends.  I want to thank my school for supporting, standing behind and caring for me and my family through all of this.  It has made our lives much less stressful.  Also, thank you so much for the cards and the donations.  Thank you!  

Today my wife started the process of staying home alone with Analise.  She said the day went great!  Nap, change diaper, feed her, nap, change diaper, bath, feed her, nap, change diaper, feed her.  I am very proud of her!  I love you Dawn soooo much!  

Analise continues to deal with the reflux, which is actually pretty common among newborns.  We have to constantly keep her head above her stomach, burp her, and move her as little as possible during and after feeding.  

Analise was originally prescribed Reglan, but after Dawn did all of her google research, we realized there were too many side effects to continue it.  And even though the side effects are rare, Analise is kind of in that category so we don't want to take any chances.  The doctor also said that several parents wanted to change from that medicine.  She was prescribed a pediatric version of Zantac, so hopefully that will keep that fire-burning acid that is causing our baby pain, where it belongs.  

Dawn thought her diet could go back to normal after the gestational diabetes, but nooooppppe!  Because of the reflux, she now has a new diet to reduce the chance of giving Analise any gas.  No chocolate or coffee (caffeine), tomatoes, lettuce, broccoli, anything acidic, anything spicy and hundred other different things.  There goes my favorite, Mexican food.  

Tomorrow, Analise has her first PT (physical therapy) visit since the hospital.  Although we are doing the exercises at home as much as possible, it will be good to get some more professional advice.  There is not really any more movement in her arms other than the occasional twitches in a couple of fingers.  Keep those positive thoughts coming!  

Analise is an amazing girl though.  She is so attentive.  When you are talking to her, she sometimes gets so excited she actually spits up.  She hates being dirty!  The minute her diaper is dirty, she lets you know.  She still eats very well too.  I have a great video of her when I pull the bottle away, hilarious.  And at 6 weeks, with those big casts, she can flip one over the other and practically roll over.  It's pretty funny to watch because she hates being on her back.  

We love her so much and know and feel the love from all of our family and friends.  Thanks for being in our lives.  We love you!

Have a great week and hope to see you soon!"

Day 43-Ready for my first day of PT!!

XOXO

Days 40, 41, and 42: Family time

Analise's surgery seems to be successful.  She is eating well, and she is pooping regularly, but sometimes she has been having some acid reflux, causing pain and also causing some "gurgling" sounds in her throat after eating.  Erik and Dawn have taken her to the doctor and are working on obtaining the right medication for Analise to relieve the pain and get her through this rough time.

• On Friday, Day 40:  Kim Tyler, Erik and Dawn's friend, who's organizing the Chick-fil-A event this coming Wednesday, stopped by and was able to visit with Erik and Dawn and also had a chance to hold Analise.  Kim, thank you for all your hard work, and we will see you Wednesday!!!  

Kim

     Great Grandpa Joe Puoci came to visit, and Grandma Annette and Grandpa John brought cousin Wesley and also brought a yummy lunch.  

Great Grandpa Joe

Grandpa John, Grandma Annette, and Wesley

• On Saturday, Day 41: Analise wore the shirt that Silvia made for her.  Silvia is Abuela's (Erik's Grandmother) long time friend.  Silvia made some easy on/easy off darling shirts especially for Analise.  

    Thank you Silvia!!

Thank you Silvia for the very cute shirts. As you can see, I love them and they fit me perfectly!!

My Mommy and Daddy love them too, they make life so much easier for them.  Thank you sooo much!!!

         On Sunday, Day 42:  Analise had her first outing, other than to a doctor's or hospital visit.  We all went to BJ's to celebrate Uncle JB's new job and for a farewell brunch, since they will be moving to Texas soon.  Carson (Analise's cousin and Auntie Ashley and Uncle JB's youngest son) couldn't get enough of Analise and even recited the prayer that he and his brother Tyler say every night before they go to bed for their cousin, Analise:

• Dear God, please be with baby Analise and help her get all better.  And please be with Uncle Erik, Auntie Dawn, Kyle, Kaley,and Kassandra, and help them stay strong. 

         Thank you God, I love you...Amen 

Carson loving up his cousin Analise

Our 10 grandkids!!
Isabela, Tyler, Evan, Ava, Kaley, Analise, Kyle, Carson, Kassandra, and Shayne
Analise gets together with 9 of her cousins!!

Day 42: Analise after a loooong, full weekend!!  Good Night!!!

              Erik goes back to work tomorrow.  

Our prayers are with both Erik and Dawn... 

as Carson and Tyler say... 

"to keep them strong" and that they know that God is there 

to help them through the difficult times.

We will hopefully see many of you on Wednesday at the Chick-fil-A event!!!