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Showing posts from 2011

A year of progress: A look back to 2011

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It has been a couple of months since my last blog; believe or not it is hard to do so. It requires commitment and dedication. I think I would add my blog to my new years resolution list, which I will not publish as it has some personal goals as well. Other than that, this is Alyssa's progress blog. 2011 has been good to her. She was discharged from the cardiologist and gastroenterologist as her heart condition and reflux resolved on it's own. Therapy had been a blessing, as she started to crawl by 10 months among other things. Her therapists, our extended family, Gloria, Dr. Dee, Dr. Shay, Maritza, Pam, Robin have been a blessing in her life. Therapy is part of our lives and will be forever just like toys are.

Alyssa has blossom from a baby to a toddler. Her face has changed, her hair had grown. She plays now. I have a blast looking at her play on her playpen. She shakes rattles, crash blocks against each other, throws things away. You must say all kids do that, but I really e…

Day 14: Wordless Friday - Alyssa visits Ana Maria Beach

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Day 13: on assignment "what I love about Down Syndrome"

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Today I am joining a few of my baby center friends and I am going to point out what I love about Down Syndrome. I really love all the cuddling time I get. Due to low tone on our children, they snuggle better when we hug her. I love to see her sleep, then I am able to inspect every little thing: her beautiful almond eyes, her tiny little nose and her tongue sticks out a bit as she is so relax. Due to her Down Syndrome, she is so little. She just turn 12 months and she is still using baby crib shoes 3 to 6 months, her hands cannot grab her 6 oz bottle, so I hold her for her while I hold her tiny fingers. I love that I still get to put her in my baby carrier as she only weights 18.7lbs. And most of all, I enjoy every minute of it, I savor every milestone and cherish it. My number one is that age is mine baby and I love her and she loves me too

Day 12: Her first mini vacation

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Hello my mom and dad are taking me to Downtown Disney and I am so ready.

First they took me to World of Disney to look around


They made me tried on some Hats from this guy called "Mickey Mouse"....first hat was a no-no


Second hat was a bit too big ...


Third hat was nice but Mom said it was even bigger....


Finally I just gave up ...maybe next time.

Day11: Precious life

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When I was pregnant with Alyssa, I had many follow ups due to my placenta previa and low amniotic fluid. I had just turned 36 years old and was offered the amniocentesis; however I refused. My quad screen test resulted in 120 in 1 for Down Syndrome, but I always said I would not abort my baby, so why do the testing. I was blindsided maybe because was scared of the unknown as I should have done it to screen for heart problems. Thanks God, Alyssa did not have any heart defect. It kinds of still scares me that my daughter might be a few of the kids left with Down Syndrome as prenatal testing has been offered more and 90% of the babies are being aborted because of a"positive"result. In the next few months, a new less invasive test will be offered to mothers to be that would detect this genetic condition within the first trimester of life. My way of thinking is this: would you abort your baby if you know he will have diabetes or cancer? Would you abort it if you knew he would h…

Day 10: A full day

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I don't think I ever had a dull day ever since Alyssa was born. Right after her birth, we were referred by the hospital to Early Intervention. Our appoitment took place when Alyssa was still a peanut at two months. They evaluated her and they did refered us to be seen by Physical therapist and an ITDS. Ever since then, Alyssa has had therapy non-stop. It belongs in our lives and we have embraced it just as brushing our teeth. After 3 month, Alyssa had had it and now she has therapy from Monday through Thursday. She has seven different therapists. On Monday, she has Occupational therapy to deal with fine motor skills such as grasping a spoon, lifting blocks, or even holding a bottle. She also has her ITDS Gloria, she is wonderful, she teaches Alyssa everything from sitting to standing from blowing bubbles to saying momma. On Tuesday, she has Physical therapy to teach her how to work her big muscles And move Around, and she also has Speech for feeding issues such as swallowing and h…

Day 9: 21 ways Alyssa changed my life

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I was thinking to write something meaningful to me, it is going to sound a bit selfish,so These are 21 ways Alyssa changed my life, in honor for 31 for 21, so here it goes:
1. She made me appreciate life as a precious gift.
2. Because of her I learn to be a better mom.
3. I wake up every morning with a purpose.
4. I accepted therapy is a way of life.
5. I have met a wonderul group of people.
6. I treasure every day as it is the last day of my life.
7. I learned that education never ends, we learn from others everyday.
8. I learned to live one day at a time and not to worry so much about the next day.
9. I noticed how well I am raising my son and how humble he can be to others.
10. I learned how to be a true advocate.
11. She has made me a better nurse and care more about others.
12. I also learn to respect other more than ever.
13. I learn that being different is just nothing but another way of saying you are unique.
14. Because of her, I am more open minded.
15. I am learning to be …

Day 8: Rambling day

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Finally I am on vacation, that means more time with Alyssa and Chris. Chris is 11, and he is already showing traits that he wants to be more independent, so I don't think he appreciates Mommy's time off like Alyssa. Alyssa has her own attitude already, at one year old, she already shows what she likes and what he dislikes. It amazes me everyday, she is just a good baby. She is very easy going, yet she only smiles to people she knows. I also thinks she is a bit "engreida", meaning "spoiled". If anybody reprimand her, she cries, but it is not a steep cry Instead it is just a fussy, "you bother me" cry. There goes that myth that all kids with Down Syndrome are "happy". She is strong too; she had two sharp teeth at the bottom which she only exposes them when she is laughing up at something Chris would do. Her jaw really could bite those hard teething cookies, so I have to be around to avoid any issue ( God forgive !) She is unique In every …

Day 7: Wordless Friday-Alyssa and her cake

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Day 6: One thing I love about Down Syndrome

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Oh Boy...I have to true to this blog to anyone who reads it...there is no one thing...there are several. Down Syndrome has typical characteristic appearance, and I will point it out with my favorite model, my Alyssa:
1. Flattened nose. It is so small a kiss can cover it all.
2. Small mouth. It is so little, but give the best slobbery kisses ever.



3. Protruding tongue. It is so cute and I know it is out when she is happy or when she is really tired.

4. Upward slanting eyes. The corner of her eyes is called Epicanthal fold. They are so beautiful and clearly expressive.

5. Wider Gap on Sandal toe. It is another characteristic of Down Syndrome.Besides of being so cute to smell and make her laugh, it is great for Sandals and to grasp toys as well.


I said it many times, Down Syndrome does not define my daughter, but her characteristics make me embrace her and love her even more.

Day 5: The "R" word

Here it goes a dreaded topic, the "R" word. Have you seen the commercials for the campaing going around? I have battle with this word before I ever had babies. Besides being a condescending word ( one and last time "Retard"), it hurts feelings and it should be avoided. Last time I heard it was at work, mind you, I work at a clinic where people are kind an care about others( truly!) well, I heard someone calling a rotten banana the "r" word. Did I do anything? Unfortunately, I did not speak up, and I have been mad at myself since then. Hurtful words that qualify a human should be avoided. Our vocabulary is so extensive and there are better ways to express ourselves. My husband and I spoke about this once. He said he hears that word almost everyday ( he works with teens mostly), he said that he cannot correct them all the time, it is who they are and how they were raised. That's where my point goes to: what are you teaching your kids, teach them it is n…

Day 4: Life expectancy

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Rewind 15 years ago, the life expectancy of a person with Down Syndrome was about 25 to 30. Mostly due to lack of medical care. Nowadays, their life expectancy has increase twice. We are now treating heart problems prior the first year.
Our kids have greater risk to be born with congenital heart defects(such as AVSD or VSD), hematologic malignancies such leukemia, gastrointestinal diseases such hirschprung disease, hypothyroidism and Altheimers disease. Target therapies and prompt interventions to this matter are beinG addressed by pediatricians, therefore, follow ups are just as important as the "3" therapies: Physical, Ocupational and Speech therapies which help our children grow up get involved in the community and helps them eventually into adulthood.
We were lucky enough to have Alyssa with no other Health issue besides gastric reflux, and I know if we stay on therapy, she will learn to be independent to her limits. I have faith that she will live the life God wants her…

Day 3: Milestones

I have to say as a second time mom, my previous experience was 11 years ago, I don't think I ever appreciate Chris' milestone like a I do with Alyssa. Babies with down syndrome due to low tone are supposed to hit the milestones a little behind that ordinary babies. I remember Alyssa's first milestone was turning from belly up at 4 months. Sitting started at 7 months, she started rocking on all for at 10 months and started crawling at 11. Now, I could only say, I have to be more careful as she knows how to crawl, she is very sleek and try to be very quiet about it, so I cannot leave it alone on the bed anymore.
All of her milestones are due thanks to all our therapist. Therapy plays a major role In our lives and I'm so glad to have a great group of therapist who taught me how to help my little one when I'm home. After therapy, repetition, repetition, repetition is a major key! But I do have to say, I enjoy every minute as we play together while working and we bond …

Day 2: What is Down Syndrome and types of it

In celebration of everyday in October, here is my day 2 tidbit about Down syndrome awareness. Down syndrome is the most common genetic condition. It noted as a person with Down Syndrome has 47 chromosome instead of 46.

There are thee types of Down Syndrome. Trisomy 21 or nondisjunction is the most common one, 88 to 95% of our kids have it. It is due to a failure of one pair of chromosomes to separate evenly. Translocation Down Syndrome occurs when a piece of chromosome breaks off and attaches to another. About 4 to 5% of the kids with Down syndrome are born with this type. Alyssa is one of them. Usually parents need to get tested as this is the only inherited one and one of the parents could be a carrier, yet it can only be an spontaneous occurrence. Mosaicim Down Syndrome is the least common type, 1 to 2%. It means some of the cells have a typical number of chromosomes and some cells have an extra one.

Regardless of which type, all Down Syndrome kids are different and unique with hi…

October is Down Syndrome Awareness month

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Welcome October!!!! I have been waiting for you with anticipation. My Alyssa just turned one year old two days ago, so it is also the anniversary of her Diagnosis. Funny thing, she was born premature, she was supposed to be born in October. Little did I know about Down Syndrome then. I was scared of it. Yes, I said it!!! Nowadays, I don't consider myself a master in the topic, but I know that Down Syndrome is not different than us. People with down syndrome have dreams, feelings, learn at their own pace(so do others), love. Maybe they do love more than others. At one year old, my Alyssa is crawling, sitting, babbling up a storm, waves bye bye, and doing her favorite thing: blowing raspberries! This month, lots of us are committed to blog 31 for 21, for all the days of October and for the chromosomes of our kids. This is my way of saying: I'm here too. Hope someone reads and learn a bit of Down Syndrome. Don't be afraid!!!!



A birth to celebrate

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I have been thinking on how to write Alyssa's first birthday post, but here it goes: A year ago, at exactly 7:22am, she was born and it changed  my life. It is normal to have a life changing experience when a baby gets born, but her diagnosis took us by surprise.Alyssa Emily Rodriguez was diagnosed with Down Syndrome at birth. I always asked what did I deserve to have a baby with DS:  why me?...I bet most of the mom with any other challeging diagnosis would have ask the same question, but why not? It was God's plan and he only knows his reasons and he probably knew regardless of her diagnosis, she was welcome into my heart. Nowadays, I have open my eyes and realized how special she is and she is mine. A year ago, I was sad and clueless on how her future might look; however, today it is a different story. I love my Alyssa with all my heart, and it has been a rough road for all of us in our family, but she has filled that fear with happiness. First and all, we have a beautiful t…

9 month journey

It is amazing how time goes by! Alyssa turned 9 months on June 29( yet she should be 8 months due to her premature birth). There is always a lot of questions: what is she doing ?, is she crawling? Is she standing? Does she says mama?. Well this post is to bring you up to date on how is she doing.
Due to her low tone issues,Alyssa does therapy almost everyday, she is off the weekends, but I TRY to do it on my own those days. In reality, therapy never ends, but it doesn't mean we are always on top of it. She started sitting on her own for 40 seconds at 7 months, now at 9 months, we are sitting for over a minute. I always say "until she feels like it". When it really happened, I was so amazed how a single milestone can bring so much hope. At 8 months, she started rocking(whoohoo!), all fours for us means we can start training on crawling. I remember my son Chris never crawled, he went to standing up and walking by 13 months. Now to the point, all kids are different, Down S…

Gracias Mami

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Tengo mucho tiempo deseando poner las palabras precisas para decir lo que mi mama ha sido ( y gracias a Dios, continua siendo en mi vida), pero que pasa, que realmente no encuentro "esa palabra". Ella ha sido mi poder, mi suporte, mi fuerza, mi inspiracion, mi ejemplo...la lista seria interminable, y realmente no creo q tengo tanto espacio para ponerlo por escrito. Sin embargo, lo unico que puedo decir es "GRACIAS MAMI", siempre has estado ahi por nosotros, y ahora es cuando me doy cuenta que eres lo mas preciado de mi vida despues de Dios, gracias por querernos y ayudarnos, por estar siempre preocupandote, gracias por el tiempo que compartes con nosotros. Gracias por tu fortaleza y amor que nos das a Chris, Alyssa y hasta Yoshi va en la lista junto con Freddy y yo. Solo queria decirte que te amamos y te queremos muchisimo.



It has been a while since I wanted to blog about my mom and I have been searching for that particular word that summarizes my feelings to her, …

Enjoying Therapy:Wordless Friday

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Six months of love

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It is amazing how time goes fast, like a blink, I still remember how hard it was to know about the diagnosis and how long it has taken to accept it. Now Alyssa is six months, she is learning how to seat, she turns at her own wish and her arms are strong enough to pick up her bottle. I do not believe Down Syndrome owns her, but I do understand it is part of her. I am so proud of her.










Dejanos Entrar ...meaning let us in

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On March 21, we celebrate Down Syndrome Day, so in honor of it, I am translating a song from Asindown. This group put a video for  the song Dejanos entrar! , Lyrics and Music by Carlos Lopez. I think we can relate and others can learn. We love our kids as they are, but others need to open their eyes and notice them more. I hope I do justice to the original song with my translation, so please forgive me if I mess up the meaning of a word. I tried to keep the translation as much close, but sometimes you can not translate something in Spanish with the same word in English.  Below the translation, you will find the lyrics of the song in Spanish, courtesy of Asidown website.

 Let Us In

You have been noticing my disability for some time
that you disregarded my abilities
and I left your bias hidden away
I propose you do the same with the "witch"discrimination.

Let us in! I have feelings and dreams just like you
Let us in! Just as a thread of voice
I fall in love with the heroe just…

Appreciation

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It is amazing how many of us don't appreciate the good things we have. Since Alyssa's birth, I have obtain a new taste in life. I thank God (really I do) literally for everything. Aly goes to therapy twice a week, and everytime she goes to physical therapy, she just amazes me as she tries her best without complaining. Yesterday, I tried to push a boundary: I fed her rice cereal. I know she is already five months and most of the babies start feeding at four, but I AM so scared due to her low tone she might choke. Feeding is no an issue I would have been worry with Christopher, but feeding Alyssa is another ball game. I sat her down in her bumbo seat, put a plastic bib on and feeding started: at the beginning she didn't know what to do, but then I noticed she tasted it and swallowed it! Hurray!!! I felt so relieved. We continue the feeding of rice cereal for about 5 spoons. She would keep her food in the mouth, taste and swallow it. We take lots things for granted, but I ca…

First Valentines Day

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As I woke up this morning, I noticed it will be Alyssa's first Valentine's day. I also noticed how much my love for her has grown. I remember when Chris was born I fell immediately in love with him, in a different way, a motherly love way. When Alyssa was born, I wish I could say it was the same. My heart was aching and  full of fears from the moment of her diagnosis, but as time has gone by, my heart is full of hope and love. Today as I hold her in my arms and embrace her, I thank God for giving her to me and making me realize of his greatness.
Happy Valentine's Alyssa..Mommy will always  love you!

Every prayer gets an answer

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Yesterday, I was in therapy with Alyssa, and I asked the therapist how do I get her to reach. She usually sits down in the bouncer and looks around the toys over her precious head, and her arms just moved from side to side, so she suggested to put a burping towel underneath her arms. So, I did once I got home, I show her she could reach and pull the lion on the bouncer to make him play music. Guess what: she did it by herself, and then she did it again, and again. I was stunned and so proud of my little one. It is such an accomplishment. I pray everyday, and just that day I had prayed for her about it and it happened, God is super good. Not only that, I had her in her crib looking up her mobile, but I guess she caught a glimpse of a giraffe my friend Wendy gave her, and she turn all on her own. Happy, Happy, Joy, Joy.....Anyway, I add myself to the list of prayers going for Peter in which my friend  from Baby Center (Patty). She even has a giveaway in her blog page a Perfect Lily as …