Today we gave in. At three years old, we have finally decided to start Baclofen, given orally. We gave the first dose of 2.5 (1/4) tablet dissolved I water and this will be the dosage for the first week. The second week, we will go up to two dosages per day. Her doctor say that it should help with:
-pain and spasms while sleeping due to spasticity.
-Better muscle control
-Maybe sit better.
I will document all about our journey with Baclofen.
Stay tuned....
Update#2- two weeks into Baclofen
Dosage- morning and night 2.5 each time.
Changes- very slight changes, legs re less stiff, slight changes in sleep pattern, no longer complains about pain at night.
Final update- Baclofen did not work! The side effects were awful (weakness all over her body) moving on to SDR... No matter if the rehab doctor thinks it will not work.
Wednesday, May 6, 2015
Tuesday, January 20, 2015
First Day of Developmental Pre-school at 3 years Old
Dear daughter,
Let's talk about your first day of school. I was overjoyed that you entered pre kindergarten. However, aside from the usual worries of whether you were ready for school or not, I wondered how much help you would need. I sat you in the yellow chair shaped like a bee that we brought from home, then I said good bye and you seemed happy. I left your school wondering, worrying, and afraid.
I had no idea what you would need for school, aside from school supplies. Pre-school was not only new to you, but also to me, although I had already been through it with your older brother. I kept thinking about you would get around in your classroom. I kept thinking about how you would defend yourself if another child tried to bite or attack you in any way, as it is usual with toddlers your age. What if you needed something you couldn't get to, how would you get around?
The morning went by and it was time to pick you up... I got to the classroom window to pick through and there you were. My beautiful princess, sitting in your bee chair while the other kids played and ran around. You seemed so content and that made me feel so happy. All the kids started to get their backpacks while you waited patiently trying to figure it all out. Then, I couldn't hold back my tears when kids came running to the door as their parents picked them up. You sat in your chair and waited, then you saw me and got so excited that I was there. You told me what a great day you had and how much you played with your friends. Your teachers said that you were such a happy girl! They made some changes and accommodations to make easier access for you, just like the other kids. Your cubby was made accessible so that you could place your backpack and lunchbox inside all by yourself. The next day, you were the first one to come out of the classroom with the help of your teachers, that was very special.
When I left you in school on the first day, I was wondering, worrying, and afraid. Today however, I am no longer worried or afraid because I see that you love school. It was a very hard decision to get you started by now I know it was the best choice I made. You love your teachers and friends. I am learning what you need as we go along so that I can be a better advocate for you.
Let's talk about your first day of school. I was overjoyed that you entered pre kindergarten. However, aside from the usual worries of whether you were ready for school or not, I wondered how much help you would need. I sat you in the yellow chair shaped like a bee that we brought from home, then I said good bye and you seemed happy. I left your school wondering, worrying, and afraid.
I had no idea what you would need for school, aside from school supplies. Pre-school was not only new to you, but also to me, although I had already been through it with your older brother. I kept thinking about you would get around in your classroom. I kept thinking about how you would defend yourself if another child tried to bite or attack you in any way, as it is usual with toddlers your age. What if you needed something you couldn't get to, how would you get around?
The morning went by and it was time to pick you up... I got to the classroom window to pick through and there you were. My beautiful princess, sitting in your bee chair while the other kids played and ran around. You seemed so content and that made me feel so happy. All the kids started to get their backpacks while you waited patiently trying to figure it all out. Then, I couldn't hold back my tears when kids came running to the door as their parents picked them up. You sat in your chair and waited, then you saw me and got so excited that I was there. You told me what a great day you had and how much you played with your friends. Your teachers said that you were such a happy girl! They made some changes and accommodations to make easier access for you, just like the other kids. Your cubby was made accessible so that you could place your backpack and lunchbox inside all by yourself. The next day, you were the first one to come out of the classroom with the help of your teachers, that was very special.
When I left you in school on the first day, I was wondering, worrying, and afraid. Today however, I am no longer worried or afraid because I see that you love school. It was a very hard decision to get you started by now I know it was the best choice I made. You love your teachers and friends. I am learning what you need as we go along so that I can be a better advocate for you.
Thursday, January 1, 2015
I can dance, I can dance like a Ballerina!
Dear daughter,
You are three years old. You are full of energy, excitement, ideas, and love for all people involved in your life. We are blessed with you, truly blessed. You have many gifts that probably seem ordinary to anyone but are actually pretty extraordinary for a little girl like you who had to fight for her life for a very long time. You can talk, you can sing, you are a funny and smart little girl. You can grab toys with your hands and play with them, you can make circles and lines, you socialize with your friends and family. You don't seem to know that any limitations exist for you. When you were a year old, we were told that you have cerebral palsy and you would "never be normal" and they were right. You are not normal, because you are better than normal, you are AMAZING! You are not what we expected, you are so much more! You are gorgeous, smart, and determined. This is your year! Every day you say you want to walk, you say you want to hola hoop and hop like a bunny and dance like a ballerina. Your journey starts here, you will do amazing things. It will not be easy, but I promise that it will be worth it.
Our journey to SDR begins today and we will work hard so you can do all those things that you are so excited about.
You are three years old. You are full of energy, excitement, ideas, and love for all people involved in your life. We are blessed with you, truly blessed. You have many gifts that probably seem ordinary to anyone but are actually pretty extraordinary for a little girl like you who had to fight for her life for a very long time. You can talk, you can sing, you are a funny and smart little girl. You can grab toys with your hands and play with them, you can make circles and lines, you socialize with your friends and family. You don't seem to know that any limitations exist for you. When you were a year old, we were told that you have cerebral palsy and you would "never be normal" and they were right. You are not normal, because you are better than normal, you are AMAZING! You are not what we expected, you are so much more! You are gorgeous, smart, and determined. This is your year! Every day you say you want to walk, you say you want to hola hoop and hop like a bunny and dance like a ballerina. Your journey starts here, you will do amazing things. It will not be easy, but I promise that it will be worth it.
Our journey to SDR begins today and we will work hard so you can do all those things that you are so excited about.
Friday, December 26, 2014
Merry Christmas 2014, this is our Christmas
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
Wednesday, January 8, 2014
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
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
Tuesday, September 10, 2013
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...
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...
Tuesday, August 27, 2013
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 5th 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.
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.
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.
Sunday, August 4, 2013
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!
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!
Monday, July 8, 2013
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.
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 :)
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