Merry Christmas 2014, this is our Christmas

It's been a while...
Our family has grown, and we have grown to accept cerebral palsy as a regular and very normal part of our lives. Most days we don't even know it's there. We are happy and blessed regardless of a small disability that inhibits our three year old from walking. It seems like ages ago that she was born a 27 weeker, along with her twin sister who did not survive past her fifth day of life. All that seems like it is way in the past, although our hearts acke like as if it happened yesterday.  We choose and try not to remember.  Instead, we choose to enjoy our present, which is filled with love, laughter,  full of life. We choose to ignore any differences that make our lives different from other families. We are no different,  we are six people with one gone, who choose to be happy. Merry Christmas to all those people who choose to just be happy no matter what comes their way. And to those who hurt and long for what could have been, may you find happiness soon enough in your journey.

Love,
Lauren

Is it selfish? The tale of a parent's decision for the child who has: "no chance of living"?

I was talking to my husband about the current news of the little girl who has been declared dead in California after suffering from severe hemorrhage following tonsillectomy (removal of her tonsils). I told him my synopsis of the story and we both immediately agreed that we would too keep her on life support for a period of time. Right after I said that if I were her mother, I would exhaust every resource before I give up and declare her dead, I felt connected to that mom.

For two years I have wondered daily, if keeping my own daughter Grace in life support was the right thing to do for her. Time and time again, I cried and blamed myself for being selfish, for fighting for her life. This I do not expect ANYONE to understand, unless you have been in a similar situation. Do you ever get that feeling that you wish you could turn back time to that one moment in your life when you made a life decision that complete changed your life? That is the same feeling I would get over and over again, every time I thought of Grace's fight for survival during her short five days of life. I felt guilty for her suffering, I felt pain for her struggle, and wondered if keeping her alive, and on the ventilator was even cruel. I kept thinking about how cruel and selfish I had been, and given the chance to go back in time, I would just let her go peacefully and not insist on her survival.

After sharing the news with my husband about the little girl who has been declared "brain dead" in California, I felt a page turning, a chapter ending, and closure for a terrible feeling of guilt within myself. It happened right after I said "I would do everything for her, I would not stop fighting until all hope is lost". So now, I know that even if there was a way to turn back time I would just do the same, follow the same course of action, do everything possible before losing hope for my little Grace. And I have released that feeling of guilt and I did what I did because I did not want to lose my daughter. Call it being selfish, insensitive, or whatever you think but you cannot judge us until you have been in that situation. When your child's life is on the line, you do everything possible, and sometimes even the impossible to save your child in any type of situation. You pray, you hope, you look for answers, you do everything you can imagine to save your child. Like this little girl's parents, I researched possibilities in ways no one can imagine. I talked to hospital directors, department chiefs in the best hospitals across the U.S. all this I did to try to save my daughter. Unfortunately her heart stopped beating and she gave up, but I will always know that never gave up on her.

As I read down the nasty comments on the published news story on CNN, accusing the parents of being ignorant, fortune chasers, among other derogatory adjectives, I think, YOU do not know! It is easy to judge someone when you have never been in their shoes.

To the parents of Jahi: Keep researching, keep fighting, until you cannot fight anymore. Keep on doing what you feel is best for her, until you give up hope and feel there is nothing more to be done or she decides to give up and her heart stops beating. Whatever you do, do it from your heart because you will not get another chance to do what you need to do, and if don't follow your heart, you will have to live with that guilt for the rest of your life.


ARTICLE:

http://www.cnn.com/2014/01/06/health/jahi-mcmath-girl-brain-dead/#cnn-disqus-area

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?