On their Birthday there were two little girls, now there is just one...

I still remember the clean smell, the smell of hospital grade, antiseptic hand soap mixed with the sweet scent of baby diapers. I remember seeing the eyes of the tiniest patients at the hospital, and next to them I saw the look of uncertainty in every parent's face, wondering what will be the fate of their baby. Some had been there long, others had  just arrived, every couple of minutes, a new baby would be brought in, looking more like a robot than a baby, hooked onto tubes and machines, absolutely helpless, with every breath, fighting to live another moment in this world and just a tiny step from becoming angels if anyone or anything failed them. A Thursday evening, mid September, two of the tiniest babies that the hospital had ever welcomed to the world arrived in the A room, the NICU room with the highest concentration of nurses, one for every two babies. Every single baby in extremely delicate condition. Each baby was inside an isolette, I wish they would have not separated them. From that moment on we didn't want to leave their side. Eventually we had to step out after 4 nights of not sleeping. Thinking back... I should've never left their side.

That day we rushed in, we got there about 40 min after we got "the call".

I was taking a shower at home, I had just been released from the hospital the night before and had come home around 4 am after being in the NICU for 4 days, watching every breath of my very unhealthy and medically unstable babies.  I grabbed my phone to call the NICU to check on my girls. One was 2lbs, the other just 1 lb. As soon as grabbed the phone I noticed the many missed calls from the hospital.  I knew something was happening.  I called the NICU and wa told to rush over there because our little Grace was dying.  We got several calls on our way there, it was the nurse saying that it wouldn't be much longer before Grace took her last breath. While in the car, we tried to explain to our curious 4 yr old what was happening and prepared him to say hia final goodbye to his little sister whom he had met just 4 days ago.

As soon as we walked into room "A" I knew that it was really happening. There was a privacy curtain wrapped around Grace's isolette, the clear box that kept her warm and tried to mimic a mother's womb.

We were told to wait right outside. All of us were heartbroken. I don't think my then 4 year old understood what was happening although he pretended he did and did not say a word. We were taken into an enclosed room where we impatiently waited to hold our baby for the very first and the very last time. I should've held her longer. We held her until she was no longer alive and closed her tiny eyes as we said goodbye forever.

Now the Twins' second birthday is right around the corner. I am very excited about celebrating with Sophie, our beautiful princess that we get to keep in our lives forever. She is such a happy and gorgeous little girl. Her smile is contagious,  her golden curls never go unnoticed,  and her insistence make her win every battle she encounters. I love my girl so much so why do I want to cry when I picture us celebrating her birthday ?

Sophie's birthday brings joy and tears to my eyes. Last year, I could not celebrate it at all because it was just too painful. The thought of Grace not being here brings back so many feelings of broken dreams, and broken hearts. Although I always kept my feelings to myself, the first year of Sophie's life was emotionally draining. I could not sing to her and sometimes it was difficult to even look at her without thinking that one baby was missing. I always tried to steer my mind from those thoughts by saying to myself that at least I still have her, things could've been much, much worse, if Sophie had not survived prematurity. The twins were born when I was 27 weeks pregnant due to many reasons. I blame myself all the time for Grace's death. Did I not try hard enough to stay preganant for longer? as if I could have controlled that. Maybe I did not do enough oxygen therapies to help them thrive in the womb, or drink enough protein, or take enough pre-natal vitamins. I should have taken Folic acid since I was very young, maybe that would've made a difference. I go over a million case scenarios inside my head. Things I could have done differently that would mean that Grace would be with us now. Sometimes I cry because I think I did not try hard enough, why was I so stubborn not to want to stay at the hospital in bed rest for the remainder of my pregnancy? Considering what kind of I person I think I am at that point, I totally don't deserve the wonderful kids that I have. Just as I am in the verge of becoming manic about my daughter's death and my other's daughter lifetime disability, a wise voice inside of me takes over... The voice tells me that it was natural to feel anxious and stressed out after weeks in and out of the hospital, it tells me that while I was there I was doing everything I could to save the lives of my two girls. I learned to question doctors and nurses. I learned to go beyond my local borders looking for answers. I called many hospitals in many states, talked to many doctors in Florida and other states. I did what I could but that was not enough.

Dear Grace, I want to say I am sorry, that I love you and miss you to tears. Happy birthday Grace Katherine, wherever you are my little angel. I will love you and mis you every day of my life, I LOVE YOU TO ETERNITY...

She is ALL THAT!

Written by me after hearing a story today from my 10 yr old niece that really disturbed me.

To the “cool girls” in 5^th grade that called their classmate “ugly” because she has difficulty walking and speaking:  “Girls, I have news for you, that girl is ALL THAT, and a bag of chips!”

When you hear her speak differently you stare and laugh, but she knows deep inside that you laugh because you are too ignorant to understand. Although you see her walking with difficulty today, you have no idea that one day she will be standing in front of the White House in Washington D.C. and she will realize that the sky is the limit for her.

Her brain might have been injured once, but is now developing at a tremendous rate to make up for early struggles, while she is becoming better and smarter, you are just “normal”. She struggles every day, you think, to get from place to place, but what she is really doing is coming up with innovative ways to do things, while your body is just “normal”.

While you will be struggling to “fit in” one day and be like everyone else, she will already know that the beauty is in being different. She will go about life with an open mind accepting and embracing diversity, while you try to be "just like" someone else. 

So to the “cool girls” in school, I challenge you today to make a change, to become smarter, to embrace diversity, to see the beauty in being different. Stop just being “normal” because being "just normal" is so NOT cool!

NOTE:
One might argue that kids are "just kids" that they just need to be educated so that they can be more accepting. The problem is that not many care. Not many teachers, not many parents, not many school staff. My sister went to the school today to bring up the issue and offer to talk or work with teachers on a plan to educate kids on embracing differences in everyone, including kids with special needs. Unfortunately, she did not receive the feedback she expected and the school is not willing to cooperate.

Little stages, Big celebrations... and milestone update 22 months old

I remember the NICU days with Sophie and Grace. For Grace, every single day that she stayed alive was worthy of a happy dance. I should have danced more because each day with her turned out to be a rare gem, one that cannot ever be found again. Each and everyone of her first four days of life, the doctor would approach us with news, they would say that she was alive because the first few days were her "honey moon stage". I didn't believe them. The doctors always said that Grace had 0% chance of living and guess what, they were wrong. Day one, day two, day three, day four... came and went. I had already stopped believing that she would not stay with us forever, until day five proved me wrong. We put up a picture in Grace's and in Sophie's isolette of Dad, Greggy, and I with Santa Claus. We used to take this same picture every year at the mall since Greggy was born. We told the girls that this year, in December 2011, all 5 of us would take this very same picture with Santa, at the mall.  Day five of Grace's life turned out to be devastating when she got her wings and flew away to heaven. Although it was a completely devastating, and shocking day, we had another little one who still lived at the hospital, inside an isolette and continued losing weight. Sophie was 2lbs when she was born, however, she began to lose weight and dropped well under 2lbs during her first week of life.

Doctors said that Sophie was following the typical course of a premmie. I stopped believing that I was taking any baby home. I really thought that with Sophie losing so  much weight, she would probably go away too. But she held on and began gaining weight again. each gram that she gained was a huge celebration. Every day we checked to see how much she gained, if she had pooped, if she had digested her food. Seem like little, insignifact things in life, but for us, they signified whether our child would stay alive. Of course, the biggest celebration of all was the day when Sophie came home from the NICU. After 70 days, on Thanksgiving, Sophie went home on a heart monitor as she continued to have Bradycardia Episodes when her heartrate would drop and if left unatttended meant Sophie would go into cardiac arrest and die. So it was a bitter and sweet moment. We were supposed to take two babies home, not one. And this baby was very fragile, I tried not think how she was so fragile. She was barely 5lbs.

Then came the day when Sophie showed us her first smile... A wonderful moment that we celebrated!
The milestones stopped coming at that point. The day when she held her head steady, the day when she rolled over, the day when she first crawled... never came. At that point we realized that there was something wrong.

After we learned that the milestones would come slow or might never come at all, we celebrate even more!

Our hearts were filled with joy and our faces were full of smiles when, at 21 months old, Sophie started rolling over. She also had kept perfect control of her head for months now. Seeing her roll over is REFRESHING, HEART WARMING, JOYOUS!

And at 22 months old, she also swallowed food, again something anyone could take for granted but not seeing the food come right out of as child's mouth right after you fed her can be a GREAT moment, I tell you. I smiled, I laughed my heart out! Sophie swallowed small pieces of ground beef. Probably about 1/4 of teaspoon, but who cares! She also swallowed about 1/4 cup of Broccoli and Cheese soup from Panera Bread. I even took a video of it. Now we are frequent customers at Panera. I know that there is a big chance that Sophie will swallow more foods in the future.

And now for the milestones... at 22 months old... Each and every one of these are worthy of a celebration!

Sophie swallows broccoli and cheeese soup from Panera
Sophie holds has perfect head control
Sophie imitates sounds and talks some words. She is bilingual, understands and speaks English and Spanish.
Sophie know the letters A, B, C, D
Sophie sings! She loves to sing (babbles)
Sophie sits with support in a shopping cart while buckled.
Sophie can roll over back and forth and can hold her upped body using her arms for about 10 seconds.
Sophie has better use of her hands. She transfers toys from one hand to the other and holds object at midline.
Sophie is beautiful, happy, and loves her family!

The "W " word...

It has been close to a year since we received the diagnosis of cerebral palsy. I thought I was getting used to everything "special". The countless appointments with doctors, the many trips to the emergency room, and even calling the building where Sophie receives therapy "our second home". I guess I had not given the "W" word any thought because we are just taking it "one step at a time", "living in the moment", you get the idea... I guess I always thought that I would keep Sophie in her stroller until she was 5 years old and when I pictured her going to developmental pre-school (which happens at 3yrs old in Florida), I thought maybe she would be walking or maybe I would bring her there and "somebody" would take really good care of attending to her needs. I really completely forgot that she cannot stay in one place for hours without anyone moving or carrying her around the way we do it at home. So when I heard the "W" word... GULP... it really took me by surprise. We are transferring her to a new office of early development and the kind lady who was assigned to our case was asking about our needs for equipment. She kindly asked if Sophie had a wheelchair. Right away I felt a knot inside my throat and just told her that no, we didn't need one to which she responded that we would need one next year for Sophie to get around when she goes to pre-school. I guess she must have seen my face (surprised, scared, who knows?) because then she said, don't worry, we still have time... I guess that's it. Sophie is nowhere near walking. She just started rolling over (ocassionally) a few weeks ago. Unless someone has a magic walking wand or something, we may need a wheelchair. Yikes! I guess my daughter will be riding a wheelchair...

Now... I will forget all of the above and just focus on today, because that is what we do, we take it one day at a time. When that moment comes, I will be so ready, and it will not be a big deal. We will make it an event, Sophie will have a very cool motor chair and we will decorate it with all kinds of cute stuff to make it less medical looking. We will be fine and she will love it. We will be so ready for this next year.... but not today.

Getting ready for Halloween yet? Our Favorite Fresh Beat Band Costumes Handmade on ETSY

My mom runs a shop on Etsy where she sells fabulous costumes for the little ones. She has some very nice outfits that are great for Birthday Parties too... Check it out today! The little girl on the pictures is my beautiful niece :)

CLICK HERE for Fabulous Costumes for little Boys and Girls

It's almost time to leave...

What if there was a cure... For Cerebral Palsy, for Autism, for ADHD? What if someone knew the secret formula to get a child who has been diagnosed with quadriplegic cerebral palsy walk, talk, and become completely independent. What if someone knew how to improve the symptoms of autism so much that a child reaches a point when they are no longer diagnosed with Autism. What if I believed that someone does exist, now. That someone, together with and a group of trained specialists in her practice, has done so much for Sophie in so little time. As if she used some kind of magic, Sophie's left hand woke up! She now uses her left hand consistently and even brings it to her mouth, we are joking that she might be a lefty :) Sophie is all of a sudden speaking words such as apple and flower and is communicating in a way she had never done before. Sophie's curiousity about the world has grown so much more as she is more mobile with and is moving her back and shoulders in very much coordinated ways. Although we did not yet reach a milestone, Sophie has come a long way and she is a different baby than she was last week. Tomorrow is our last day in San Rafael, with Anat Baniel and what an experience this has been. THANK YOU for being there for Sophie, and following her journey. I know that she will walk because she is a determined little girl and YES, there is a cure!
www.anatbanielmethod.com  
Please note: I am expressing my own, personal opinion based on my own research and experience. I am not being paid by anyone or any organization to write this post.

Our trip to the Anat Baniel method center- the details.

In an effort to help those doing research and trying to find before and after stories, and results with ABM, I will write all about our first trip to ABM on this post.
The trip from Florida to San Rafael, CA was entirely funded with the help of FAMILY, FRIENDS, AND LOVING HEARTS.
- The 2 plane trip took a whole day about 12 hrs total. Ft. Lauderdale to San Francisco. layover in Atlanta,  GA.
- Sophie did really well until about an hour before we landed at SFO. She had been constipated,  as it is usual for 3 days and was crying in pain for the last hour of the plane ride.
-Status, milestones before Anat Baniel: 20 months old.
Diagnosis: Spastic Ataxic quad or diplegia (received both diagnosis),  dysphagia.
Hands: Sophie forgets that she has a left hand and just keeps it fisted 90 percent of the time without using it. She does use her right hand a lot more and with better efficiency.
Legs: high tone. Doesn't crawl, or walk, or stand.
Trunk: low tone. Unable to sit independently and loses balance of her upper body easily. Unable to toll over either way. She has rolled over, on her own, twice in her life.
Great head control.
Verbal: speaks up to 5 words almost perfectly.  Mimics sounds. She is very bright and very social, loves to smile and say hello to everyone.
Eating: unable to swallow solids. Her diet is 100 percent liquids only.
- ABM- Begin Day one: am and pm lessons

DAY ONE SUMMARY: The results so far: Impressive.  Sophie lifted up her shoulders high up ftom the table and held her shoulders up using her arms.
Truly amazing. I had to hold in my tears a few times as I couldn't believe how strong and coordinated Sophie was. Unfortunately Sophie has pink eye (conjuntuvitis) in both eyes and infection in her ears. After seeing so much discharge coming from her eyes before her second lesson, we had to quickly find an urgent care facility to get her treated. She still did great at ABM. Hopefully she will feel better tomorrow. She is on antibiotics right now.

DAY TWO SUMMARY: Sophie is better from pink eye infection and seems to be having some ear pain. Sophie had a great day today. It was not as impressive as yesterday because she seemed to be quite tired but, Great, nevertheless. About 15 minutes into the afternoon session, she grabbed a toy phone with her right hand, and then something MAGIC happened, Sophie opened her left hand and using her index finger began pushing the tiny buttons, one at a time using just her pointy finger. That was a WOW moment. She has since then continued to use that hand, it is as if she finally realized that she has a left hand. Tomorrow we will see Anat and I will be ready to take lots of pictures and videos! Have an amazing night!

DAY THREE SUMMARY: Sophie saw Anat today for one hour at a cost of $500. We also saw another AMAZING senior practitioner for $200/ 45 minutes, his name is Neil. Anat is very nice, very well educated, and has a great sense of humor. I must say that this group of praticioners at Anat Baniel Method, San Rafael take great consideration in the needs of the child. Based on our experience, they do not do anything that makes the child upset, this is not to say that the child is not challenged but they listen to what the child wants, needs, and they make sure that the child is comfortable. The environment is extremely positive. At all times, I felt that Sophie was learning something new. There were many wow moments. Very slight changes that only I can notice because I see her movements, and lack of movement, all day, every day. Sophie looked comfortable and happy.

DAY FOUR SUMMARY: We saw Anat again today for 30 minutes and a $300 charge. We also saw another Senior practitioner in the morning, his is great. His name is Chris, for a charge of $200 for 45 minutes, Developments: Sophie is remakably more vocal. She says several new words such as "apple", "flower", and no. She communicated when she needs something and answers back in a way that I cannot believe. Sophie recognizes that she has a left hand and uses it very consistently. She loves her left hand now, brings it to her mouth and just spends a lot of time staring at it.

To accept or to not to accept? That is the question.

The moment that Sophie received a diagnosis cerebral palsy with spastic ataxic diplegia, I didn't fully understand what the future would hold. I was told that Sophie would never be "normal" and that she would probably walk around the age of 7, but not the way "normal" people walk.I didn't fully understand how, why, what was going to happen in her future. I chose to accept the diagnosis and go on... As I began to realize the missing pieces (milestones) I began to understand why she was different.  I was open about her diagnosis with family and friends from the beggining because we needed the support. I began to receive lots of suggestions and advice as it is natural for our loved ones to try to help. I got lots of suggestions about how we can bring healing to Sophie through spiritual means, I chose to believe that if God had any intention of healing her, he would do so himself.  I looked a little deeper and thought if this is happening its because there is something to learn from it and it will not go away so easily. I chose to accept.  While I accepted I also didn't give up on possibilities. So did I really accept? Here I am hours upon hours,  miles upon miles, all across the country, away from home, looking forward to what tomorrow's visit to an alternative option to therapy will bring.  Hoping to see a miracle. Hoping that it will make a dramatic change on my child who is 20 months old but has the physical abilities of a 3 month old baby. So did I really accept her as she is? Yes I did, I am accepting that she is a child who deserves to reach her full potential, no matter what that is and I will fight for her, and with her, for as long as she needs me or wants me to. I will accept and embrace her for what she can do and not what she cannot. I will continue to give her the opportunity to get better at whatever she does and never give up, because that I would do for my typically developing child... and I will do the same for her. So my goal is not to make her "normal" my goal is that she reaches her full potential,  whatever that may be.  My goal is that she loves life and enjoys every minute of it, no matter what her abilities or disabilities may be. In the end, isn't that what all parents want for their children?

How do I?

Today is one of those days when I wish I had that "mothering a child with cp manual" that never came in the mail. For starters, I need to start brushing Sophie's teeth sooner rather than later. I know that some parents do this really early, but I didn't feel the need to brush teeth with my first child until he was about 18 months, and I honestly have been dragging on the thought of brushing teeth with Sophie for a few months now. I remember and even have a video recording of the first time that Gregory brushed his teeth, right at 18 months old. He was wearing the cutest monkey overalls paired with a green onesie. He was stading on his Elmo stool, his grandma had given him for Christmas.  He brushed for a whole thirty seconds all by himself. Now Sophie is 20 months old, 17 months adjusted (for prematurity). How do I brush her teeth? She is not standing independently so, do I hold her against the sink with my left hand while I  attempt to brush with my right? She will not do it on her own at first because her hand movements are not very precise. She is very sensory around her mouth, so the task will probably be difficult to do without a distraction. Do I try to stand her on a stool and hold her close to my body with my legs while I use both hands to brush? Really, how do I do this? The terrible twos have also arrived with an extra dose of terrible. I have a super smart toddler who wants to be everywhere at the same time, that knows what her body is capable of doing but does not realize that it takes just a little more time and effort for her to get to point A to point B. She hates that she is dependent on me to mobilize her everywhere she wants to go, and I find that she is getting frustrated often because of this. How do I makeup for everything that she is missing? , like opening the cupboards, running like a chicken crossing the street, climbing like a monkey, sitting here and there playing with every toy all over and even things that aren't even toys. How do I do this with her so that she doesn't miss out? Do I become a toddler in her terrible twos and have her with me like a shadow? I tried this but it is not enough, she wants more.
So tell me, if you know...How do I?

Awereness becomes me!

I wrote this a few days after receiving the diagnosis of Cerebral Palsy for Sophie and after talking to the advocacy group at my local UCP.

Everything happens for a reason?

When bad things happen, your life doesn't go as planned or something that you thought possible becomes impossible, it is hard to understand why it happened to YOU. You hear people say it all the time: Everything happens for a reason! Yet, you can't find a good enough reason to explain why this is happening to you.

Today, I feel like I am entering a world that I never knew existed. I mean, I knew that there were kids with Autism, kids with disabilities, kids with behavioral challenges, yet I always looked, saw, heard through awareness programs and kept on going. I went on with my life... I didn't feel like I was ignoring it, I just thought "Oh, ok, I am aware that they exist" but I didn't open my life to their world. To the world that is "different" to the world of people with disabilities. In fact, before having the excuse of having a kid in a stroller I often used the "big" bathroom (the one with the sidebars, lower sink, and lower toilet you know the one meant to be used by people in wheelchairs) because it was just more comfortable for "me". I never stopped to think what if while I was in there someone in a wheelchair really needed to use "that" stall. In fact even worse, I though about it but quickly ignored it because it was gonna be just right quick. Now I think what if that person was my daughter who really had to go and can't hold it any longer?
Yes, awareness is being thrown right at my face nowdays. Furthermore, after two days of long hours of coversations with moms who have kids with Autism I am finally becoming Aware! I was brave enough to ask questions and learn more so that I can do more. The ads on tv, the highway billboards, the bumper stickers didn't do it for me.... It was my own child's condition (which is not even Autism) that made me "aware".

I know that it is far too early to say that I learned everything that this situation was meant to teach me. It is far too early to say that I am fully aware of everything there is to know to care enough, and be concious, helpful, and understanding about all people with any type of disability... I am even scared to used the words disabled or disability when talking about my own child, but now I sort of understand where this is going... I am starting to see (from my standpoint) why this is happening to "me". Because it has opened a door to a world that I had ignored all my life, a door to a path that will make me a better person.

Fundraiser Success- Countdown to see Anat Baniel

Our fundraiser campaign was a huge success. Thanks to everyone who helped us make this dream trip into a reality. Many opportunities have come as a result of this fundraiser. One highlight of this amazing and humbling experience is the chance to create awereness and acceptance of kids with special needs. We decided to let the kids design our campaign Tshirts.  We are having a contest that consists of explaining to your kids what is Cerebral Palsy and why is it important to accept and include kids with special needs,  ask lots of questions instead of staring at differences, and spread awereness. Kids are encouraged to draw what cerebral palsy awereness means to them and send their drawings to: helpsophiewalk@hotmail.com before Sunday,  April 27th, 2013. The best 2 drawings will bechosen and will be used on our Tshirts design and will win a prize. All the drawings will be distributed through various media to spread awereness and acceptance of kids with special needs.

SPECIAL THANKS TO OUR BUSINESS SPONSORS:

Homeschooling giant DenSchool.com
From Palm Coast, FL

Leader in Summer Camp Fitness Program for Kids in South Florida
Fitness For Kids

And all the amazing families and people who helped in Our Journey to Help Sophie Walk.

I Love You To Eternity- A Tribute To A Sibling on Siblings Day

Today, April 10th, is Siblings Day- This is a little poem that I wrote for my son, on this special day. I Love You to Eternity, by Lauren Smith- I love you to eternity my first born, my first boy, my eternal love... Your heart is full of joy eventhough you have been through so much. You loved your sisters from the moment they were tiny as seeds, and step by step you saw them grow. You talked to them, encouraged them every day, to grow, grow, and grow because you wanted to teach them everything there is to know. Finally, the day arrived, and you saw your sisters for the very first time. You were very happy that they were finally here, and then something happened, one of them disappeared. Although you didn't quite understand why she was taken from you, deep inside you knew that she would forever be with you. I told you she had to go in a magical bus, headed to heaven, and she couldn't come back. Your love for the one that stayed grew stronger, and you couldn't wait for the day, when you two could play. You began to notice other babies were running, and you asked me why your sister was not yet walking. You said maybe some Stride Rite shoes would help her walk after wearing them for 11 days? I said: "Baby, its not the shoes, although those shoes might help other kids, your sister, my love, has special needs". Every doctor appointment, every therapy, and every step of the way you cheer your sister, you always say hurray! You have become an amazing 5 year old, the bravest boy that I will ever know. One day when you read little this poem I wrote for you, don't forget you are Sophie's hero and you are my hero too!

Resources-Trying everything "Out of the Box" for your child with Cerebral Palsy

Pediatric Neurologist-2nd best in the U.S. according to some online research. Specializes in Neuromuscular conditions and epilepsy. Richard Finkel 1717 S. ORANGE AVE., SUITE 100 NEMOURS CHILDRENS CLINIC, ORLANDO, ORLANDO, FL 32806-2946 Phone (407) 650-7715 Bowen Therapy: They have some amazing videos of the results obatined on many kids in Australia. http://bowenhealing.org/ Anat Baniel Method: Check their website: www.anatbanielmethod.com before you call them. Practitioner in Gainsville, FL http://www.reachingtolearn.com/ There are a lot of amazing videos on youtube about Anat Baniel Method. Shriners Children Hospital Traditional medical approach, They use the most up to date equipment and technology to help kids with cerebral palsy. Shriners Hospital http://www.shrinershospitalsforchildren.org/en/CareAndTreatment/Orthopaedics/CerebralPalsy.aspx

My toddler, your toddler. Your normal, my normal. What's similar, and what's different. A glimpse of what to expect for parents of babies who are newly diagnosed.

What is it like to raise a child with cerebral palsy? Is there a difference between raising a child without physical limitations and raising a child with a disability? I did not give much tought into these questions until now. I love my child, it doesn't matter what her physical limitations are, I am there for her to help her with whatever she needs, just like I would if she was more independent like other toddler her age. When we are in our very own nook, that is our home, life is normal. I see no limitations, I do what I need to do for her. She is held most of the time by either my husband or I. Now... once we step outside of nook, our normal, our comfort zone, everything changes. Explanations are often needed, questions arise, we step out of normalcy and become two parents who walk around with a large question mark right above our heads. There is the visit to the grocery store... We go grocery shopping always with a stroller because I tried sitting Sophie in the basket and one too many times she tipped sideways and hit her head with the iron bars. No, I wasn't being an irresponsible parent letting my baby get hurt, yes I was dumb but I was also ignorant to the fact that she had cerebral palsy at that time and thought trying over and over again made sense because using the front basket was appropriate for her age. Needless to say, I no longer use a shopping cart. I now place all the groceries or as much as I can fit in the stroller hoping that I am not accused if shoplifting one of these days. I have already prepared a clever response, if I ever were accused of such a thing. I try to do most grocery shopping with my husband's help so we can have both the stroller and the shopping basket. There is the visit to playground... I wrote about my playground experience on a different post but will address on here why I dread visiting the playground without my husband's help.There are the toddlers running around and the mommies who brought them to let go of energy so that they have a nice nap later. Then there is my toddler who sits in my arms and is amazed by everything there is at the playground and tries to pull away from me over and over again because she wants to walk, run away, like those kids, but she doesnt have the slightest clue that her legs have other plans. Swings are great, our favorite equipment at the playground. Since Sophie can now hold her head pretty well, its an effortless activity and she really enjoys it. The slide is another story, it is Sophie's favorite equipment. We can either slide down together or I can hold her under her arms and slide her down, I after three efforts I am usually tired. There is dinner at a restaurant... Would I like a high chair? hmmm... "no thank you" she will sit in her stroller. Are you telling me that I cannot have the stroller next to our table because it stands in the way for people to walk? hmmm... I hate having to explain my daughter's medical history to the restaurant staff but here is where I have no choice but to say, "waiter: I need the stroller next to me because my daughter needs to be in it. I know that you offered that we use a high chair, however, she cannot sit in a high chair. She has cerebral palsy and therefore is unable to hold herself in a sitting position." I know that this is just the begginning of a long journey where many questions, looks, judments will arise. As Sophie gets older, everything will change because society will look at her and expect her to do certain things, and those things will only get more complex as she grows. I have faith that she will gain some independence at one point or another. Whether it'd be sitting independently, walking, etc... I cannot help but think tho, at what point will this happen, will it ever really happen. I feel the need to educate myself, I feel the need to think of clever and informative ways to inform those that ask and judge. Tell you what, you know how you worry that your toddler might fall off the bed while he/she is taking a nap? I can rest easy on that ;)

Got proof?

Maybe is the busy days and nights or my possible state of denial or acceptance or just call me crazy but I cannot remember what is supposed to be "normal" and what is not when it comes to development (eventhough I have a 5 year old child) So these past few weeks I was giving some thought into how we are barely, almost, meeting milestones. Especially when I read and see other kids that have CP slighly more severe than Sophie, whether it is lack of verbal skills or less head control; I think that we are oh so close to what is so called "normal" development. I guess my "normal" just became exactly what I see every day in my daughter. To me she is as normal as they come. That was until today that I "got proof". My mom came to visit from out of town and brought my 17 month old nephew and two older nieces with her. They are all staying over for a few days. My little man is super duper cute! a loving little boy. He uses his hands very gracefully, I notice the very precise use of his tiny fingers. He raises both his arms when getting dressed and when he wants to be picked up. When being fed he opens his mouth chews and swallows his food. He has a straight back all the time and sits in the tub, he walks so perfectly! Quite honestly, I look at my little man and as I admire his every move and I think wow, he is BRILLIANT! My little man is over 20lbs at 17 months old, he sits in front of my five year old son while he (my son) reads him a story. His back is straight the whole time. He never wabbled to either side or fell backwards or frontwards while sitting, not once. He picks up a ball from the floor and throws it to me. He wants to play catch. He says: "ball". We went to the playground and he climbed three steps if stairs them got on the slide and said "whee" as he slid down. He then took off running... My little girl laughed and tried to throw herself off my arms a few times as if letting me know that she wanted to run after him. So I said "let's go have some fun there is other stuff we can do". We went back to the slide and I put her on the top of the slide. She laid down all smiles and I held her by under her arms as slid her down and said "wheeee"... When she reached the bottom I saw her laying down helpless waiting for me to pick her up. We did it again and again and again until my arms got so tired that I decided we should pick another activity. After all there is lots to do at the playground right? Some kids were running around, some kids were climbing the rock wall, others were swinging from the monkey bars... We just decided that we just want to sit on a bench and watch. Except that my little girl did not want to do that. Well, my feelings if normalcy began tumbling down and I thought in my head "this playground really sucks!" Well I guess this is proof that yes my daughter does have cerebral palsy and there is no playground around that was made thinking about kids that have physical impairments. Ok... I accept it she is a little different from the other 18 month old kids at the playground. I got the proof. Now I will just think of some things we can do that might be more enjoyable for her.

Diagnosis- Breaking the news...

I wrote this Facebook private message to our closest friends and family after we received Sophie's diagnosis. Hola friends and family, Happy New Year! This Holiday Season was wonderful! we got to spend time with family and friends and had a great time. The kids also received some wonderful presents from everyone. Sophie received a really cool Barbie tricycle. Gregory had one just like that but with Diego, right around her age. There is just one slight problem, Sophie is facing some physical difficulties that will make it very difficult for her to ride it by the time she grows out of it… and that is why I felt the need to write this message to you today. It was a difficult decision to write this message because, let’s face it, we live in a culture where we try to hide our problems from others, we live in a “show off” society. We “show off” the BEST of our lives: Cool cell phones, vacations, houses, cars, we always even “show off” the BEST side of our kids. In this society, we tend to hide the bad and ugly from everyone’s sight but it is different for me this time and I need to tell you now because I am “showing off” my Beautiful and Super Smart Baby Girl who is One year old, wears amazing princess dresses and tutu skirts, even as pajamas and is not able to sit, stand, or walk independently, has difficulty controlling her hand and arm movements and has begun wearing really cool shoes (Leg braces) that will enable her to walk at the moon when she becomes an Astronaut one day. By the age of 7 (I have been told by doctors) she will even pushing around a walker that will help her walk and will get us a really super close parking spot at every parking lot, everywhere we go. About a month ago, Sophie’s Neurologist diagnosed her with cerebral palsy which is an injury inside the brain caused more than likely due to her prematurity. Her nervous system is therefore affected which means the nerves which carry messages from her brain to her legs and arms like to take a holiday more often than not. She is receiving therapy 4-5 times per week by three different therapists, and is seen by 5 different doctors of different specialties about every two months. Obviously, we all have an idea in our heads about what a typical child of a certain age “should” be doing. And so naturally, you are asking us questions (especially we have not seen you in a while) why don’t we put Sophie on the floor to play, sit, crawl, walk, or sometimes giving us recommendations to help her walk faster. Sometimes it is hard for us to explain the reasons because some people react so differently, there is usually a moment of silence, followed by an “I am sorry”, and/or words of encouragement among other reactions. So I just want to say that there is nothing to be sorry about, the definition of “normal” is different for everyone, Sophie is normal and should be treated as a normal child like Gregory or any other kid. We still do and will continue to do pretty much everything like we did before: Playground, parties, sports, etc… Life is good! It is just taking a little bit longer than we thought, but WE ARE GOING PLACES! Thanks for reading…. Now you will not be surprised when you see us wearing some cool devices Hugs and kisses, Lauren

I just finished reading "Kids Beyond Limits" by Anat Baniel

What an amazing book. I recommend it to ALL parents of kids with special needs. You will gain so much from it. To me, this book is a training guide for parents, a must read. I cannot go into details right now because it is 11:30pm and I AM TIRED., but let me just say that I cannot wait to take Sophie to the Anat Baniel Method Center in California in the summer. I know that her life will change for the better with those therapies.

The day I ran a marathon...

At around 5:30 pm, I realized that I was dripping in sweat and as tired as if I had just run a marathon. This was supposed to be my easy day. Since we try not to schedule therapy on Friday, I usually leave Fridays for one of the many doc appointments that we have every month for Sophie. Today, however there were none. It was a pretty slow day up until I got home from getting my son from pre-k. Every night around this same time is rush hour here in our household. There is me, and there are two kids who need to be bathed and fed before 7:30 pm so that they can have their bedtime story and then fall asleep so that my mommy time can begin :) Today however I was feeling like I was running a marathon during rush hour. I decided to give the kids bath together so that Sophie got a little water play time. As soon as I decided to pull her off her bathchair she cried hard. I was already celebrating the fact that she had not thrown up today. I celebrated too soon because as soon as I put her down on the bed to dress her she began to gag, once again. I have become somewhat of a professional in managing my daughter's vomit episodes, she has been throwing up almost every day now for the past two weeks due to her reflux and overactive gag reflex. So as soon as she shows the slightest gag, I detect it and run to the sink as fast as I can in order to limit the amount of vomit I will need to clean up later. We are running low on pillows, by the way. I took two pillows off duty because they were vomited on. Sorry to be so graphic but this is exactly what happens around here. Actually it almost always happens around 4am so I was lucky today. So after cleaning up and dressing both kids I sat down to feed them, one at a time. I realized then that I was sweating so much, and I felt as if I had just run a 5K marathon. As I see their sweet faces now that they are both asleep I see that running the marathon today or any day is all worth it. They are totally worth it. One day I will look back at all this vomit and just think, ahhhh.... it was all worth it.

The road that led us to starting a fundraiser. ..

Many of our close family and friends might be wondering why we decided that the only way to get help for our daughter's medical expenses was to start a fundraiser. What could be happening in our lives that made us become so humble as to put our story out there for everyone to read and ask the world for help. On this post, I will answer those questions. We thought about it long and hard... If politicians go all around the country asking for money to fund their campaigns. Don't forget that simple quesion when you file your taxes, would you like to donate $3 to the political campaign? Yes, maybe millions of Americans say yes to donating $3 to raise funds so that someone can make their way to being President. Granted that someone is a college graduate with years of work behind them and a fat bank account that they have built up from their years as Senators. Here we are over a year into physical therapy and yet we haven't had the kind of progress we would have expected. Sophie is still not rolling over, or sitting, or crawling, so the standing and walking seem to be further and further. I still wonder if it will really happen. It really sucks that she can't do those things because she really wants to walk and be mobile. She often gets frustrated and starts crying when she tries really hard to stand or reachfor toys, and it sucks, it really sucks to see my daughter struggle all day and every day. CP also affects her sleep and eating and pooping, Going #2 is a daily battle for her. Being the kind of person that I am I began to investigate how and what tobdo to help my daughter. I came across a blog called unexpected fortune. This is where I read about Anat Baniel and her almost miraculous work with kids that have special needs. I immediately purchased her book Kids Beyond Limits and started reading it. I was convinced by the middle of the book that this method could give my daughter the help she needs to walk. God had put us on the track to success. Now of course nothing comes easy. Their center is in California. It will cost almost $10k to make a 2 week trip between expenses and therapy. I talked to my friends and my sister. They were happy that there was help for my Sophie. There is someone out there who can help help become an independent adult someday. Now the trick is that the earlier she can receive therapy, the better chance that she will walk. You see, by age 3, the human brain is already 80% of its adult size. During the first two years of life it is also wired to learn many complicated tasks like walking. So this is when I realized that the clock is ticking for Sophie to be able to learn these things with ease. So my sister was telling me about a mom that was doing a fundraiser online to buy a van with a lift in order to transport her son who has cerebral palsy and is on a wheelchair. She said to me: Do you want to ask for help now and help your daughter walk or do you want to do this later when you have to buy the van with the chair lift that costs over $50k. That was my turning point. I want my daughter to overcome her challenges. I know that there are no gurantees, but I have to know that we are doing everything we can to help her. Even if it means asking others for help. Wouldn't you do the same for your child? ">

Dolphins, Florida, and Cerebral Palsy

Turns out that I have a "BEHIND THE SCENES CREW" (that is what I will call my support team cause it just sounds so cool). These are a group of people that is composed of friends and family that really care about us and Sophie's well being. Well one of my cousins sent me a Facebook message yesterday telling me about a place in the Florida Keys that does Therapy for kids with special needs with Dolphins. Very cool, right? I called them today to get some more information because my cousin also said that they have scholarships available. Here is scoop: they recommend that the child is at least 3 yrs old to start. Their programs are family oriented which means that siblings are encouraged to participate and it is free for them. Their programs have much success with helping the child with verbal and motor skills. They have a 5 day program with a cost of $2200. Parent are present with the child in therapy at all times. I hope to bring Sophie to experience this program when she us 3. Here is their website in case you want to get more info, by the way I am NOT paid for anything I mention on my blog. This is free advertising based on my very own research :) http://www.islanddolphincare.org/ Phone number: (305) 451-5884

Anat Baniel Method

Kids beyond limits... I bought this book on Amazon.com and I cannot put it down. Of course, with two kids to take care of, I am only halfway thru reading it after two days. It looks very promising. I even mentioned ut to our OT therapist today and said that she had never heard about it before. On this book, and based in my understanding of what I have read so far, Anat Baniel talks about therapies that teach the brain itself rather than the muscles to perform their normal functions. For example, during therapies (PT) Sophie is put on the walker or gait trainer even though she still has not mastered to roll over or sit. ABM is nothing like conventional therapies.The book teaches about 9 essentials that we must follow to help any child, nit just children with special needs, reach beyond their potential. So far I have read about Essential 1 and 2. MOVEMENT AND SLOW. It all makes sense and I have already begun applying the essentials to our lives. I really trust that after I finish reading this book, our lives will benefit from what I learn and I will be better train to help Sophie reach her full potential. I will post more details as I read thru this book and discover how it can help me and other parents of children with special needs. I do feel like the clock is ticking for Sophie. She will be 2 soon and I have not seen much improvement of her motor skills in her legs. She has made marked improvement in the use of both her hands. I must read fast :)

A little prayer...

Dear God, Thank you for my beautiful children. For them, I live everyday. They have made me who I am, and encourage me every day to become a better person. You have shown me that nothing comes easy in life, at least not the things that mean the most to me, to my heart. Please guide me to the tools that I need in order to my job well. Please give me the strenght that I need to care for my family even when I am sick or have not been able to sleep all night. Please give me the patience that I need when one or both of my kids wake up every hour because they are sick or uncomfortable. Plesae help me find the tools to teach Sophie how to be independent. Help me do all this with aa big smile on my face and an awesome attitude. Amen

Bathchair has arrived!

As excited as I was to get this bath chair I had no clue having it would make me feel this way.... Sophie no longer fits in her infant tub so I asked the therapist what everyone uses and she ordered us a bathchair through the early steps program. I know how this is going to make my life easier and Sophie's life happier as she can now take baths in the big tub like her brother. I see it and I think to myself if this is permanent, if we really need it yet. Am I in denial? I tried it for the first time snd she HATED it!!!! She cried the whole time she was on it. Her spastic muscles got the best of her and she was stiff even on her trunk where she is usually low tone. I am afraid to try it again.

Freaking out about seizures, Baclofen, and surgeries.

I try to live my life one day at a time and enjoy each moment not to drive myself crazy. Some days I fail at that. I have too much information right at my fingertips which can be good and bad. The neurologist has already mentioned baclofen in Sophie's future. Maybe through a pump. I have seen what this looks like and I am really scared... From what I gather most cases of spastic diplegia require surgery, add that to my worries. The Orlando Doc said that since Sophie had not experienced any seizures to date that the chance for any major seizures is low, hmmm... don't know if I should feel so great about that. All I can say is that I am really scared. I have been through a lot and I am still standing, I am an ironwoman because my kids and my husband need me. Now... how much can this iron woman take before braaking down? I don't know. Every now and then I let myself cry hard about things to make sure that I am not building up negative feelings inside and can continue to do what I need to do for my family. Last night I watched the video about Ben and I cried for about 20 minutes. The story was moving and it kicked in that is OUR reality for the rest of our lives. We are different and things will be different for us and for Sophie and that is Grand, I am not complaining, I love my life the way it is, the only thing I would add would be my daughter Grace. Our lives are filled with corkiness, I love you's (not the kind you just say, the REAL I love yous) lots of surprises, subject to change, different, hugs, family, urgency, caring individuals, strenght, outings, and the occasional naps. My family is what it is because our experiences have made us this way. We are knit together, there for eachother, always. And we are not afraid to be corky. Of course there is the more than occasional fight butwe know that we must forgive, forget, and move on because we only have eachother. My family is my life support, without them, I cannot be the Iron woman.

Milestone at 17 months old

As I was playing with Sophie inside her ball pool, I stopped giving her support on her back and she was able to hold herself unassisted for about 45 seconds woohooo!!!! First time ever!

Wishlist-17 months old

I feel very guilty sometimes because it is very difficult for Sophie to play like a typical 17 month old baby. For any type of play activity we do with Sophie we have to be 100% involved to make sure she is safe. She has to be held all the time whether she is sitting or standing. I have been doing research trying to find things we can do with her for fun. Going to the playground is always an option, but again it is a 100% hands on activity. I came up with this wishlist of things that we need to make Sophie's day more enjoyable and active. -Free concepts bike- this is a therapeutic trycicle made for children that have cp. She would benefit so much from it because it would help her with much needed muscle work in her legs. http://www.freedomconcepts.com/fc_products/f3-bike-series/discovery-series/dcp-mini/ -Music together music lessons- this would be not only a fun activity that will enrich her growth but also help her use her hands and keep those muscles active by leraning to play music instruments. -Bath chair- As she grows slowly but surely, Sophie can no longer fit in her infant bathtub. Bathing her in the big bathtub is out of the question as she cannot hold herself in a sitting position. I will continue to add items and ideas as I am able to find them.

Siblings and Therapy

This is really the most difficult part about going to therapy six times a week. Keeping my five year old son busy during Sophie's therapies is a challenge. He starts Pre-K at 1pm and all the therapies are in the morning. I am noticing that he wants attention for him too because during therapy time is all about Sophie. He waits exactly for the moment when I have to answer questions and starts yelling "Mama", look at me, look at this. Anything to bring attention to himself. Since they offer swimming lessons at the therapy center, I signed him up for lessons there so that he would receive attention during his time. Unfortunately he didn't like it and we ended up losing the last 2 classes. I continue to think of ways to help him get involved and guve him the attention that he deserves too.

The Big Surprise-This is how it all started...

Can you imagine having to choose between two of your children? Having to choose which child will live and which one will die? . Praying to God to make that decision for you. Praying to God so you wouldn't have to make that decision at all. Can you imagine hoping for a miracle that would save the lives of your two children so you don't have to choose.

That is exactly what  happened in September of 2011.

Part One-
I knew that I was pregnant with twins right from the start. I had gone through an IVF procedure which made my dream come true of becoming pregnant for the second time. Two embryos were transferred and I couldn't stop throwing up, even from before I found out that I was pregnant. The test came out positive and my stomach would get more queasy by the day. It was week 8 of the pregnancy and time for the first ultrasound. The doc saw 2 sacks right away and confirmed that we were having twins. The first heartbeat was easy to detect. He did some searching and just as he started to say that the second baby would not hang in for too long or it may even be an empty sac, there it was. Strong second heartbeat.

It's TWINS!!! The doc said to us.

I was happy and scared at the same time. I looked at my husband and smiled. I looked at my son and said: "You are having two babies!" The nurse joked around saying to my son that he would go crazy if it were two sisters....

PART TWO-
I have one word for the first trimester of my twin pregnancy: NAUSEA. Pretty severe nausea. By week 16 I had already lost 20 lbs. I attempted to take Zofran, prescribed by my doctor but I got very constipated and decided only to take it for about 3 weeks.

By week 16 I went for my first visit at the Perintologist. I was all by myself, most doctor visits were just me my husband worked many hours. That day I got to see my beautiful babies for aa long 45 minutes. Twin ultrsounds take very long. That day I was also to that we were having two girls. The were both measuring good. However, one of the twins was measuring slighly smaller, which had always been the case at my OB visits. There was nothing to worry about.

Part 3- oops everything was not ok... I guess the Peri forgot to tell me that one of my twins (the smallest one) had an Omphalocele. An omphalocele is a sac that protrudes out of the belly button. It can contain one or many organs inside and basically means some of the organs of the baby are growing outside of the baby's body.


WEEK 18 of twin pregnancy- By now I was making bi weekly visits with the Peri and considered a high risk pregnancy, only based on the fact that I was having twins, nothing else. It was time for another sonogram. One that would change my life forever. I was called into an office that day right after my sonogram. Right then I knew that something was wrong with one or both of my girls, yes, that day it was confirmed that we were having 2 baby girls. The Peri closed the doors behind her as soon as she came into the room. And then she started by telling me that twin A was slightly smaller than twin B but they were both measuring on track however Twin A had an Omphalocele. Now this Omphalocele could contain just intestines inside or it could contain some of the baby's organs. The last situation would be best believe it or not because it was a lesser chance that the Omphalocele was associated with a genetic disorder. The cure would be surgery either at birth or later on after birth. If surgery could not be done at birth then the Omphalocele would be covered until surgery was feasible. Most babies with Omphalocele s also present heart defects. As the doc explained all these major details to me, I listened in shock, tears began rolling down my cheeks. Why is this happening? This was definitely one of those You have got to be f***ng kidding me moments. Then she went on to talk about statistics how one in blah blah blah bla..... she also explained the last imperative detail, you know... I could kill my child if I couldn't bear the news that she would need special care. That is not an option doc!!! Is that clear? Omphalocele, genetic disorder, down syndrome, bring it on! She is my kid no matter what strange medical stuff is going on with her. I doesn't matter, I dont care, I want my little girl. So next the doc said she would refer me to a pediatric cardiologist who would do a sonogram of the heart for both babies to determine if any heart defects existed. She also said I should have an amnio done to anticipate for any genetic disorders. This way if any of the twins had any genetic disorders the medical team assisting the birth if the twins could be ready to act if any special care is needed. I was to have this done that very same day. I said yes, and this I will regret forever. Also, I was to give birth via c - section and at a hospital with a highly trained Neonatal Intensive Care Unit.

Part 4- THE AMNIOCENTESIS
There I was, ready for the amnio. First, the doc would star an ultrasound to keep an eye on how the babies were doing during the procedure. Then, she would insert a dye into one of the sacs in order to make sure that she didn't draw amniotic fluid from the same sac. So she poked my tummy with a gigantic needle that went on to insert the dye. She chose baby A (Grace) 's sac to put in the dye. The the doc pulled out a small amount of amniotic fluid that was to be tested. Then she poked my tummy again, but this time she pulled the fluid from the sac of Baby B (Sophie). I was to rest for the remainder of the day. She would call me with preliminary results in 2 days. And then with FISH results in 7 says. FISH were more detailed results of genetic testing.
3 days later I got a phone call with great news! My girls were free of genetic disorders. They both tested negative for down syndrome among other genetic disorders that could be detected with the preliminary testing. What a relief, now I just needed to wait for tge FISH results. I was relieved, afterall the Omphalocele wasn't looking so bad anymore when compared to possible disorders that could affect my daughters.

Part 5- IKEA
A couple of days went by as we researched online how many days the FISH results would take. Unfortunately for me, the results came earlier than expected. I decided to take a walk around Ikea that day. I had some great finds in my hands. I had a couple of baby girl towels for the twins and some organizing boxes for my son's crayons and drawing supplies.  My phone rang as I walked, it was the Perinatologist, herself.  Not the nurse, not the assistant.  I immediately knew that something was terribly wrong. I had a bad signal so the call dropped a few times before I finally walked to a good spot, talk about a nerve wrecking moment. I heard Dr. Say, Twin A tested positive for Digeorge Syndrome, also called 22q deletion syndrome. I began to cry and as I listened to Dr. Explain that my daughter will either be severely disabled or die. I ran, ran, ran, trying to find an exit to that stupid store that felt like a maze with no way out. I wanted to scream, just get me out of here!

Part 6- The Twins love to play, the twins can do backflips too.
Sitting here, thinking back, I never imagined life with Sophie but without Grace. They had become like Salt and pepper, like Max and Emme, like Carrie and Samantha, like coffee and donuts,  like thing one and thing two. In fact, that's what we called them, Thing one and Thing two. Ever since I was a little girl, I dreamed of having a baby girl. All my life I spent hours coming up with girl names, so the fact that I was getting to pick two girl names was my dream come true. One night, I sat on our dining table and grabbed a pen and a piece of paper. Gregory, Daddy and I began to brainstorm names that we would vote on later on. I had always loved the names Victoria, Grace, Katherine, and Sofi. In my dreams, I failed to realize that there would be a Daddy who would want a part in picking our daughters' names too. After much brainstorming and much voting, Gregory gave the final decision. He picked the names Sophie Elizabeth and Grace Katherine.  The names were perfectly fit for our two princesses.
Sophie and Grace started to move so much, day and night. If Sophie moved, Grace would move. I could tell the difference between each baby's movements.  They were both very active little babies. Every week, we got a glimpse of their lives inside my belly, they kicked eachother,  played with eachother.  Grace loved to suck on her tiny thumb.
At our next appointment,  we got sheduled with the geneticist.  Both Daddy and I would be tested for the presence of any genetic diseases, 25% of 22q deletion syndrome cases are inherited. On August 1st, 2011, we received information on what Digeorge syndrome was and what our lives and Grace's life would be like living with Digeorge syndrome.  There could be a number of medical conditions associated with Grace's diagnosis including: seizures, cardiac defects, cleft palate, small eyes, vision problems, strokes, small brain, slow brain growth, spina bifida, developmental delays, small limbs, and a weakened immune system. We were to make a decision whether we wanted to terminate the pregnancy for twin A only within the next few days as we were fast approaching the 24 week deadline. We immediately told the geneticist that would not consider that option. We waited for our test results as we hoped that one of us tested positive. If one of us had Digeorge, our daughter had a great chance of living a normal life. Our parental FISH  Analysis came back negative.
During my next ultrasound, I asked the tech to check for cleft palate, the answer was no, Grace did not show a cleft palate. She was a happy baby, a perfect baby, slightly smaller than her fraternal twin.


Part 7- Your dark and scary office is is giving me Pre-eclamsia, I swear doctor.

A little background. What was I thinking?

My daughter always scissored her legs, since she was discharged from the NICU. I never thought anything of it and no one ever mentioned to me of the possibility that this may not be normal for a baby. Looking back, I feel like I was in shock for the entire first year of her life after having lost her twin sister to Digeorge syndrome when she was just five days old. I will talk about that story on a separate post.

I asked her ped several times what to look for as for milestones and she always said not to worry because premmies don't catch up with their milestones until they are two years old. I remember seeing all the babies that were born after her reaching their milestones and feeling a sense of jealousy mixed with confusion.  At one point, a baby was born in my circle of friend and I remember thinking to myself I bet that baby will sit before my baby. A little after she turned one, I began to ask myself: How is she going to catch up overnight? If she has not reached her 6 month old milestones, I don't think this will happen so quick that she will be sitting and walking by age 2. I began researching online and continued to run into the words cerebral palsy. As I continued to read and go down the list of signs, I realized that it might be a possibility that my baby would have cerebral palsy. I brought this up to her physical theparist and Ped, who both said maybe. I felt betrayed because no one had mentioned this to me and still they were not telling me what I should do. I asked them both, so if she does have CP what do I need to do? They both said that we would need to continue therapy and she would eventually walk. The PT recommended that I take her to a Physio and so we did... I was not interested in taking her to a neurologist as I felt that whether or not she had CP, the course of action would be the same so why stress myself right? Well as I learned more and more about CP I changed my mind and went to the neurologist. She told me right on our first visit that Sophie had Cerebral Palsy. She said that my daughter must have received an injury to her brain either during birth or maybe before or after.  There is no way to know and there is no cure for cerebral Palsy.  She ordered an MRI which, according to her would tell us the extent of the injury.

We took Sophie for the MRI early January 2013. I scheduled the appointment to get results 2 days later...

According to the neurologists the MRI confirmed her diagnosis of cerebral palsy. My heart almost stopped for a moment. The doctor left the room really fast. I had no idea what to do next.

17 months old - This is the beginning of a difficult but rewarding journey.

This is my first Post. My daughter is 17 now months old and diagnosed on November of 2012 with Cerebral Palsy (Official diagnosis was Cerebral Palsy with Spastic Ataxic Diplegia)  She was born premature at 27 weeks and her weigh was 2lbs at birth.
I have not been able to forget those three words since the moment they were told by the neurologist as she was reading the MRI that revealed why my daughter was still not rolling over, sitting independently, or standing at 15 months old (11 months adjusted).

This is what she does as of today. I know that as parents we look for other kids the same age online with the same diagnoses to see compare milestones, etc.
Verbal: She says about 5 words clearly, and mimics sounds she heras from anyone.
Recognizes brother daddy, and mommy.
Is very smart, can recognize letter A,B,C (I teach her the alphabet on a daily basis as I did with my son)
Moves hand up and down to signal hello or good bye. (Modified wave)
Claps mostly bringing her right hand to her left.
Stands while held by her arms by someone with and without AFO's. Gets tired after about 2 minutes and falls down on the floor. She turns feet inward while standing. Sometimes I get scared thst her legs are going to break since she is so thin.
Reaches for toys with left and right arm. Right arm dominates.
She is still unable to roll over, sit or stand independently.
She is very social, makes eye contact, and says hello to any passerby.
She has difficulty using her left hand so much more than her right hand.
She refuses to eat anything solid including pureed food. Her nutrition consists of Pediasure and Gerber goodstart formula mixed with wheat cereal. She takes Prevacid twice a day and daily Curturelle Probiotics.
Therapies: we have six therapies per week. Physical, occupational, and feeding/speech. In any given month, Sophie is seen by a minimum of 3 Doctor specialists.