Tommy brushes his teeth on his Elmo step stool

Tommy's self-care skills are very good. It seems it comes very natural on him. I think it is because he is very observant. I realized how observant he is since he was 8 1/2 month when he discovered people and objects have shadows.

I introduced brushing his gums by himself since he was a baby, then the transition to brush his teeth was smoothly. Ironically, he knew to brush his teeth before he had teeth. He brushes his teeth with my supervision and help. I don't think it won't be much different until he is about 5 years old or older. Even although he is not walking yet, nothing is stopping him of experience brushing his teeth as other toddlers of his age, which make me very proud of him. 

Tommy's gross motor skills are slowing down again. He seems to be more fine motor driven again, but his team is looking for ways to keep him working on his gross motor skills while he does things he enjoys such as: "Brushing his teeth". Therefore, one of his Physical Therapists recommended to use a step stool in the bathroom because he can stand up on it while he brushes his teeth. We tried this evening and he enjoyed it. He was on his tip-toes trying to look at himself in the mirror. His PT suggested to buy a step stool of 2 steps because stepping will help him to improve his balance and have more weight shifting in his hips. Meanwhile, we will use his Elmo step stool. Enjoy the photos of Tommy brushing his teeth.

I enjoyed the snow today

But today, my mommy and my daddy took me out to play with the snow. It was my first time on the snow and I truly enjoyed it. I was so happy that I didn't want to go inside again. I cried so bad because they brought me inside anyways. But my mommy promised she will take me out to play with the snow again. Enjoy the pictures of my first time on the snow.

¡FELIZ NAVIDAD! MARRY CHRISTMAS!

This Christmas was very special to me because we started our own Christmas tradition. We will keep Baby Jesus figurine in a secret place and Tommy will put Baby Jesus in the Manger every December 25 in the morning until Tommy gets older. My sister and I used to put Baby Jesus figurine at 12 am every December 25 in the Manger because it was when baby Jesus was born. 

When my sister and I had our first Nativity, it was the most exciting experience for us because we made it by ourself. It was a Nativity Paper doll book. We had to color everything (animals, characters, houses, trees, and so on). We cut all figures and we used too much glue to keep the paper dolls in place. We added our imagination, too! We put Christmas lights and "musgo" to represent the vegetation. We put manila paper to create the mountains and the streets of our first Nativity. We borrowed a table from our grandma to display our First Nativity in the living room of our house. Mom always supports us even in our craziest ideas, she was proud of us for our initiative to have a Nativity. I remember the book was sold for the biggest Department store in Panama, "El Machetazo".  Our first Nativity wasn't that pretty, but it's the most memorable Nativity I have ever had. 

After our first Nativity, my sister and I made the decision to continue the creation of our own Nativity every year; and not for seven years as it was the original tradition by our grandparents. We designed the houses, church, bridges, streets and so on. We got collectible figurines made in Italy that were sold in "El Machetazo". I was in charge of the creativity of our Nativity since I was 7 years old. My sister and I continued our promise until the last Christmas before I came to the USA. I will heritage this tradition to my son. He will use his imagination and skills to do every Nativity memorable, as I did when I was a child. 

Bellow are photos of a Nativity, which is display in a local Mall in Panama City, Panama. My dreams is one day to create a big Nativity as it is display in the photos below.

Representation of the Announcement of

the Birth of Jesus to Mary

Representation of Mary and Joseph's Wedding

Representation of the Herod King

Representation of the Wisemen

Representation of  Mary and Joseph

asking for a place to stay 

Representation of the Nativity

Representation of the Presentation of

Baby Jesus in the Temple

Marry Christmas!

Tommy's pretend play skills

I didn't understand the importance of pretend play until I read the article "The Power of Pretend Play" by Adele M. Brodkin PhD, who says "what  are some of those values through imaginary play, children:

• Come to terms with their feelings, thoughts, confusions, wishes, even fears. 
  
  
• Change the power balance by "becoming" the adults in charge: Mommy, Daddy, policeman, teacher, doctor, carpenter, gardener, etc. Suspending the reality of their size, age, and relative powerlessness is very reassuring. 
  
  
• Fulfill some unacceptable wishes: returning the baby sister to the hospital, for example. 
  
  
• Make sense of their social environment. If you pretend to be someone else, you will get a sense of how it feels to be that other person. 
  
  
• Develop feelings of mastery and control. In their role-playing, children are clearly in charge. And the play gives them opportunities to use many of their developing skills: eye-hand coordination, language proficiency, even large motor performance on tricycles or jungle gyms. It provides an opportunity to be inventive, to take risks (social, not physical risks).
  
  
• Learn concepts and symbols — far more meaningfully than in situations that call for mere memorization and rote behavior.
  
  
• Learn from their mistakes without mortification or any sense of failure."
  

Tommy spontaneously initiated pretend play when he was about 15 month. He started to take anything that looks like glass of water and pretend to drink water. He also initiated pretend play by talking on the phone. Before, he picked his phone toy, put on his ear and started babbling. Now, he loves to dial and call his grandmas from his cell toy. See the video below, Tommy makes a phone call to his grandmas.

We are reinforcing his pretend play skills by engaging him in more activities to transform objects and actions symbolically. He has a collectible toy farm from Playmobil. He moves the animals and make the (his) animal sounds, but when he is alone. He stops as soon as he sees me and doesn't do it again. He has also brushed his stuffed animals teeth and hair. We are encourage him to do more this type of actions with his stuffed animals. He also hugs and kisses his monster puppet. The new pretend play activity is to feed a doll and he is doing an excellent job. As my sister-in-law said: "He is really blossoming and becoming such a little man, not a baby anymore." I can see it when he pretends play because Tommy's pretend playing skills are age appropiate, we are just exposing him to the proper toys according Tommy's preferences and our therapist's guidance.

I am collecting all type of cute containers, plastic jars and bottles, and boxes from our groceries. This is a way to have items to pretend play without spending money. This is a fun way to encourage language development, too. Tommy tries to say "garlic" every time I give him a empty garlic jar. Going to the grocery store is an activity for pretend play I am planning when Tommy gets older because he likes to go to the grocery store with us (he already has a shopping cart).

If you know any activity to encourage pretend play, feel free to contact me. I will be more than happy to try it.

Tommy is enrolled in Parents as Teachers

As any other parents, we want the best for our child; therefore, we are providing to our son with all the tools he needs to reach his full potential and we have great people who are guiding us to nurture our son's brain.

Tommy is currently enrolled in the Parents as Teacher program, which provides parents with child development knowledge and parenting support. The program's goals are:

• Increase parent knowledge of early childhood development and improve parenting practices
• Provide early detection of developmental delays and health issues
• Prevent child abuse and neglect
• Increase children's school readiness and school success

This is a very neat program because it is FREE. We have once a month home visit by a teacher. She gives us hand-outs about child development and positive parent-child relationships, which have became very helpful for me. Our teacher uses the same materials and activities she currently uses with other kids of Tommy's age. She hasn't modified the program because he is responding to the games and activities according to his age. She said Tommy has good attention span (it is not the first time we heard it), which is very important to learn in the school years. The activity of our last visit was about Music and Tommy was shaking his head according to the rhythm and incorporating his hands as part of his dance, he finds the way to shake is booty; even although, he is not walking yet. He is a funny guy!

I think the key of success, for kids with or without the syndrome, is STIMULATION. It seems, there are more and more kids with T21 who are doing many things according to their ages. The blog "My life with Gabriel" is a true examples of what stimulation can do. Gabriel is doing great regardless the syndrome. Read what his mom says about their Parent-Teacher interview:

T and I had our parent-teacher interview this morning before school started. We brought along the kids who played while Gabe's teacher caught us up to speed. I guess I expected more -- maybe more negative? -- I don't know -- but I came away from the meeting realizing that Gabe is doing great. In fact, he's right in line with his little peers right now. Other than needing more help in the French department, he seems to be participating in every other aspect, and his "scores" in certain areas (counting to 39, shape sorting, word recognition, patterning, etc.) are above or the same as his classmates...click here for the full story

I think we cannot know the future, but we can build a better future in the present. How we stimulate our son today will help him tomorrow.

Beautiful couple with T21

I found an astonished photo shut of a beautiful couple with T21, Christian and Andrea. I couldn't resist to share it.  http://connywenk.com/blog/2009/04/andrea-and-christian.html

Tommy rolls his Spanish "Rs"

With or Without the syndrome, Tommy has to be bilingual because my family doesn't speak English and my husband's family doesn't speak Spanish. My little boy doesn't have options! Tommy is not raised to be bilingual because he is growing up within two cultures and the spontaneous practice of two languages, English and Spanish.

Tommy is not the first child with Trisomy 21 who is raised in a bilingual family, and I am sure, he won't be the last one. I have been inspired for other parents who have raised their kids with Trisomy 21 in a multicultural environment where the kids with Trisomy 21 have learned more than two languages. Yes, more than two languages!. If you would like to know more about bilingualism in kids with Trisomy 21, click on Language Learning in Four Bilingual Children with Down Syndrome: A Detailed Analysis of Vocabulary and Morphosyntax.

For now, our target language is English; therefore, his Speech therapies are focused in helping him to speak English. Even although, he says three words in Spanish (bébe, tetita, and agua). He imitates sounds in both languages. Nonverbal communication skills are the foundation for the emergence of any language for all kids with or without the syndrome. Therefore, we are working on his nonverbal communication skills to strength his communication skills in both languages.

His Speech Therapist realized Tommy was doing the Spanish "R" during Tommy's jargon moments. He spontaneously learned the Spanish "R" sound just by listening. When we realized he can do the Spanish "R" sound, we asked him for the"R" sound because we are working on helping him to answer questions. See the video bellow, you will see Tommy rolling his Spanish "Rs".

If you are subscribe by email and you are unable to see the video, please Link to www.asuperbaby.blogspot.com

What to be thankful means for us

We are extremely thankful with God for all he has given to us. We have a perfect son, who came with a little extra, but that little extra has made us stronger as a family. That little extra has taught us what unconditional love and real support mean. That little extra have guided us through all the challenges we have faced the last past two years. That little extra has made us to be closer to God. After all, that little extra it is not what our son is, it is what our son has. 

We are extremely thankful with God because he has let us enjoy our child in a special way. The bound that we have with our son it's stronger and more valuable than platinum. We know our child more than ourselves, we don't take his developmental milestones for granted. God has given us an special child who is here to remind us God knows the future; we can just know the present, but we can change the future if we truly have faith. 

We are thankful for our families who have supported us since we knew about our son's genetic disorder. My mom has an unbreakable faith who seems to be as a God's messenger when she gives me confidence and tells me God is there with my family. My sister is my best friend and the best sister ever. When I am hurt, she is hurt, too. My dad always tells me good advises and he makes me happy when he says: his grandchild will go beyond we can ever imaging. 

We are thankful for our friends, who have been there to listening to us about our happy moments with our son or about our worries because it seems something may be wrong. 

We are thankful for our child's pediatrician, and specialists who have been in our life because of the diagnosis. We are extremely thankful with our therapists who have become as our son's second family. We are thankful for every time we have told them about something new Tommy is doing and they respond back with excitement and say: "it's age appropriate." 

We are thankful with the company I work for. They have let me arrange my schedule according to my child needs. Because of them, I can have my full time job and enjoy my career. But I can also be a full time mom in charge of all the arrangement of my son's therapies and medical appointments. Yes, it is stressful! But, I get my paid back every night when Tommy hugs me after we read. Or when he gives me a wide open mouth kiss on my cheek. Or when he tells me with a very strong voice "NO, NO, NO". Because I know he is all right!

I am thankful for my husband who is always there for me. I am thankful for having you "Baby" who always knows when I am worried just to look at my face. I am thankful for every time you snuggles with me when I am worried for our son. You always help me to see the big picture. You are the husband of the year!

Happy Thanksgiving!

Rosa, Adam, and Tommy

If you are wondering where is my photo, I am always behind the camera taking the photos. 

Aptitudes of a swimmer

I used to explain to Tommy when he was an unborn baby how good he will feel the first day he will take his bath. While I was taking my shower, I used to talk to my unborn baby how mammy will wash his little face and how good he will feel the warm water around his body. Then, an special connection happened between Tommy and the water since he had his first bath. 

During a regular check-up appointment when he was a baby, our pediatrician recommended to us to putting him in swimming classes because he saw aptitudes of a swimmer on Tommy. We knew Tommy was very excited every time he took a bath; then, we enrolled him at the local YMCA for baby swimming classes when he was 9 month old.

Because of he lack of motivation to move, the IEP put him in aqua therapy this year and it has become his favorite therapy. His PT told us today what our pediatrician told us a year ago: Tommy has aptitudes to be an early swimmer. Tommy has taken the initiative of going under the water by himself several times during the sessions. Today, he wanted to swim on his own and he pushed his therapist away and went under the water. When she took him out of the water, he was laughing. She said he has the essential movements to swim and keep his head out of the water.

We are seriously thinking to put Tommy in a swimming school because it seems it is what he wants to do. 

Little helper

My mommy was organizing her cloth yesterday.

I wanted to help, but she thought

I was disorganizing her cloth. 

Messy me

You are used to seeing pretty photos of me.

I am not always like that. But I am cute;

even though, I am messy.

Funny straws as a therapy

The use of straws as a therapeutic tool is very popular among parents with kids with Trisomy 21. Because they help with the tongue protrusion which is very common in kids with Trisomy 21 because of the low tone in their mouth (jaws, cheeks, tongue and lips). Tongue thrust in other problem that kids with Trisomy 21 may have. "Tongue thrust (also called "reverse" or "immature" swallow) is the common name given to orofacial muscular imbalance, a human behavioral pattern in which the tongue protrudes through the anterior incisors during swallowing, speech and while the tongue is at rest."

Tommy doesn't have most of the oral motor issues that may occur because of the syndrome. But he has tongue thrust because of two factors: Trisomy 21 and heritable genes. Tongue thrust is in my family, for this reason, we have been very proactive in monitoring Tommy's oral motor function since he was evaluated at his 8 month. Tongue thrust becomes a problem because it alters the oral-facial structure (teeth and mouth) if it is not treat it to break the habit. Therefore, speech problems may occur in some cases.

According to Sara Rosenfeld-Johnson, the founder of TalkTools.com, "The use of straws in speech therapy is not uncommon. For many years straws have been an important utensil in feeding and lip rounding exercises. On the client's level the straws themselves are viewed as fun and the food is experienced as a reward... Exactly what is straw drinking? Normal straw drinking requires complex movement from the jaw, lips and tongue. Through the coordination of these movements a vacuum draw is created. Each of our speech sounds are made with a different combination of these graded movements."

We introduced the straw cup to Tommy by the end of his 8 months. His OT and I thought he was too young to start with a straw cup, but I decided to give it a try. Tommy took the straw training cup right away, he didn't need training to learn to suck through the straw. It was a good sign because it proved that the low tone in his mouth is very mild. We have used several types of straw cups to strength Tommy's tongue. Now, the therapeutic treatments we are using are the Straw Kit - TalkTools® and the ARK's Lip Blocks™.

Sara Rosenfeld-Johnson describes the straw kit as a hierarchy of straws progresses through a matrix that advances from multiple sips to single sips and then from thin liquids to thickened liquids while varying the straw's diameter, overall length and the structural complexity via elbows, curves, twists and placement of a lip block."

"ARK’s Lip Blok™ comes in three different lengths: the 3/4 inch standard size, 1/2 inch, and 1/4 inch. By varying liquid consistencies, these Lip Bloks™ supplements therapies for increasing sensory awareness, symmetry, coordination, graded control for liquids, jaw stability, and lip, tongue, and cheek function."

We replaced the straw # 1 from the Straw Kit - TalkTools® for the Lip Blocks®™. Tommy wasn't adapt to the straw # 1 and it was difficult to use it for every drinking, specially, if we had to go out. The Lip Block™ adapts very well to the Munchkin straw cups.  Tommy takes all his drinks using the Lip Block™, which will help to strength his tongue faster. We have seen improvement in Tommy's lip closure while drinking from the Lip Blocks™. His tongue also looks more retracted. It will take a couple of month to complete the straw program, but it is easy to use and adapt to the kid daily routine. 

The use of the Lip Block and the Straw kit is being supervised by our Speech therapy.

I am finally teething, Yahoo!

My mommy and my daddy always knew teeth eruption delay may happen to kids with Trisomy 21. They also think I could be a late teether because there are late teether in our families. Therefore, they were not worried about me having my teeth late.

I have been cranky since last week which is unusual on me. I didn't know how to tell my mommy. I signed "hurt" several times and my mommy didn't get it.  Then, I have put my little hands in my mouth to get some relief. My mommy took me to the Aqua Therapy on Monday and I suddenly cried for no reason. My PT saw that lower gum were very swollen. We went to the family room to change my clothe after the therapy. My mommy checked my gums and then, Surprise! There are several teeth coming at the same time. There are three teeth coming in the upper gum. Two teeth already cut and one is cutting.  It seems 4 teeth will soon cut in the lower gum. It seems that I have 7 teeth coming.

My mommy and my daddy are happy because I am teething. But I am not "it hurts". My mommy gives me teething tablets and they are really good. I do "Mmmmm" every time she gives me them because they relief the pain and they are tasty. The best of these tablets is that they are 100% Natural without side effects. You know my mommy, always looking for good stuffs for me. 

I am ready for my teeth because my mommy already taught how to brush my teeth; even although, my teeth were coming late. Maintaining good oral hygiene is very important. When I was a baby, my mommy daily cleaned my gums with a Nuk brush. Now,  I do brush my teeth with supervision. My mommy and my daddy will take me to the Dentist for an examination. I will write later to let you know how my first appointment with the Dentist is. 

Eating popsicles is fun!

We have realized that Tommy as any other kid like to do things in his own way. We are looking for fun ways to do his therapies because he doesn't cooperate if they look like therapies. As his PT says: "He has a mind of his own".

We are working on strength his oral motor skills and popsicles are a wonderful therapeutic tool to increase oral stimulation and awareness. Therefore, we are giving Tommy home made popsicles (sugar free) and he likes them so much, that he gets upset when I tell him "it is all done". Oh boy! If he sees daddy eating a popsicle, he wants one, too. He is in the stage toddlers imitate their parents. Well, Tommy wants to do everything just like daddy. 

Hats on!

Playing with hats is a good way to expand children's vocabulary because we can use multiple adjectives to describe the hats. For example: The hat is golden.  See the video bellow, Tommy is wearing his Viking hat. I tell him he is a Viking every time he wares this hat. In this way, I am trying to get him in role-playing.

 

Most of the time, I play with him face to face because he can clearly see the movement of my mouth and tongue. We also try to play in front of the mirror and he can see his facial expressions. By watching himself, he will realize if he is properly moving his tongue and mouth to produce the sounds (words) I say. Hats are a great tool to promote concept development, language development and social skills. 

According to the book "The Parents Guide to Play" by Dr. Wendy Masi and Dr. Roni Cohen Leiderman, "Talking to your toddler about the hats the two of you are wearing helps expose him to new words that will someday become a part of his vocabulary. And seeing you in different hats teaches him that you're still Mommy even if you look a little bit different. When your child is a bit older, he' ll start to enjoy role-playing with  the hats, a game that will stretch his capacity for imaginative play."

We are trying to give Tommy all the necessary tools to allow him to reach his full potential. He was able to flow two step command this morning while we were playing with the hats. He gave me daddy's baseball hat and he wanted it back; then, I told him: "come and pick the hat up". He did! I didn't realize he was able to understand two-step command until a few minutes later. It was a grate feeling to be witness that my son has accomplished an age appropriate milestone. Now, we will keep reinforcing this new skill.

My 18 month check up

My mommy took me to my 18 month check up yesterday morning. As always, it  took longer than I thought, but I had fun playing Peek-a-boo while we were waiting for my pediatrician. All the nurses and Dr. Sherman were amazed how I am progressing. They said I am a very healthy and happy guy. My grow chart is good because I am a tall guy.  Dr. Sherman thinks I have a great personality, which it will help me later in my life. Every body likes me! I am not kidding, specially the ladies. I guess because I am a flirt. I got a flu shot and I impressed the nurse because I didn't cry. She said it's not usual with the other folks. 

Tommy's gross motor skills don't follow charts

Tommy's gross motor skills were slowly progressing during 7 months. His Physical Therapist (PT) thinks Tommy was choosing not to be mobile because his decreased muscle tone is mild and his body is already strong enough to get around. We got into the conclusion there are a few factors that contributed to Tommy's lack of motivation to be mobile.

• He seems to be a manipulative toddler because mommy spoils him too much. 
• He may be tired of all of us pushing him to get mobile. He may probably want to try it on his own.
• We were not giving him enough space to explore around. 

Therefore, our PT decided to do something unusual, taking him out of the therapy for a little while. We did and we were astonished of the amazing progress he has done since then. He has gone from barely moving to a lot of motion. He also got Aqua Therapy because our EIP team was worried of his lack of motivation to get around. He has accomplished in the last 7 weeks what he didn’t in 7 month. He has suddenly gone from sitting up on his own while he lays down on his back to army crawling and occasionally creeping to pull up; from pulling up to occasionally climbing in and out the couch without cushions; from standing up without support for a few seconds to cruising on the crib.

I have noticed Tommy started to sit up from a lay down position when he was about 11-12 months, but he completely stopped doing it. According to the typical milestones, babies crawl first and then they learned to sit on their own. But Tommy wasn’t crawling yet. I also noticed that Tommy was able to kick the ball forward since he was 12 month. I guess he learned this skill by watching other kids at The Little Gym. I have also noticed Tommy is able to crawl on hands and knees, but he doesn't want to do it in regular bases. If he doesn't creep before he walks, we will put him to crawl on hands and knees later because crawling strengths the body, improves fine motor skills, and supports brain development.

Currently, we are doing the "No Physical Therapy" as a therapy. Basically, we are just working on Tommy’s balance with exercises that are playful for him. 

• While he is sitting on a bench, he tries to catch a balloon or a ball.
• He is learning to push a toy, our Physical therapists agree that push toys for babies are not appropriate for Tommy because he is good size toddler. He is using a shopping cart toy that let him to keep a better posture. 
• We have created more places where he can naturally pull up. I put Safe-er-Grip
  by Mommy's Helper in the bathtub to allow him to use it as support to pull up after we are done with his bath. I also put a slip-proof bath mat.
• Let him to go any where in the house with supervision.

Tommy is doing a great progress in his gross motor skills. 

It seems that all of them at once, but the most important he

 is finally motivated to get around. I cannot wait to the day 

I see him giving his first independent steps. See the photo

 below, he is doing very good by standing against the wall.

 

31 for 21: Tommy as a model in a Fashion Show

Through the Internet, you will find hundreds of blogs talking about Trisomy 21 (T21). This is because October is the awareness month for T21 (Down syndrome). I joined to the group of bloggers who are celebrating 31 for 21.

 The little extra chromosome in my son has given me extra pride when I talk about him. The extra chromosome has changed my life with extra love, extra care, extra courage, and extra faith. Having a little extra is not bad, I think having a little extra is what make people with T21 the most powerful people in the world. I am not afraid of what the future may grant for my son, after all, I had the opportunity to know and meet terrific people with T21 at 1st Annual Fashion Show organized by the local Down syndrome Association. I was impressed of all the models and their abilities.  I consider them as the Pioneers of a new generation of super heroes with T21. 

This event was wonderful because I could meet other families and members of the Association. I got involved in the organization of the event, and off course, my son was also a model. This event was very well organized. The atmosphere was very positive and full of love, happiness, cooperation and FUN. I feel that the Down Syndrome Association is like my second family; If my son wouldn't have a little extra I would have missed the opportunity to be member of this great organization.

Thank you to our family and friends for supporting us in this great event. Enjoy the video.

 

My prenatal diagnosis (2008)

October is the awareness month for Down syndrome. I want to share our story of expecting a baby with Trisomy 21 because we were prenatally diagnosed on October, 2007. Our life went though a different path when we knew that our first child was prenatally diagnosed with Trisomy 21, but our love and faith got stronger. We never discussed if we want to keep our baby because there were nothing to discuss. My story is different because the doctors never put pressure on us for“termination of pregnancy.” They never mentioned it to us. I think that having the support of the doctors to save my baby’s life made a huge difference on how I accepted.

We were very pro-active in the way we handled the news. We became members of the local Down syndrome association the day that we got the results. I invented my own prenatally stimulation program because I couldn’t wait until he was born to do something. I told my self: You know what! There are too many things to get ready for the arrival of my son. Then, I went to shop baby books, beautiful baby cloth, cute hats, the prefect outfit for leaving the hospital, and so on. I spent a lot of time choosing the best educational and stimulating toys, including toys to strength my baby’s muscles. I had the happiest pregnancy because I didn’t have morning sickness or complications. I truly enjoyed my pregnancy!

We put all our faith in God! I had my mom supporting me as my best friend and counselor. She always told me that my baby was alright because there is nothing impossible for God. She prayed the rosary, every day for a month, asking for her first grandchild’s health and for my husband and I. She lives in Panama and I live in the USA, I never felt lonely because she always was there for me, giving support and strength on the phone.

We had support from our families, friends, coworkers, employers and strangers. Yes, Strangers! We used to received letters from a Parish in Illinois (I live in Missouri) of a prayer group telling me that they were praying for my son. We received custom made gifts for my baby (he got a prayer blanket, a prayer bear, a prayer hat and a pair of prayer booties). Catholics and Non-Catholics prayed for our son, including the Archbishop of St. Louis.

We made a decision of going through all prenatal screening and testing for our peace of mind. We knew that every second was important for Tommy’s life because we were told that unborn babies with Trisomy 21 can die in the womb or they can be premature, which is not good for a baby that already has a genetic disorder. The medical procedure for expecting a baby with a genetic disorder became tedious and overwhelming. We periodically visited the hospital. We got about 7 ultrasound level II to check our son’s development in the uterus. The first ultrasound showed the soft sings or markers for Down syndrome (fetal growth delay, calcium deposit in his heart and enlarged brain ventricles). But suddenly, everything start changing as magic. He growth improved on November, he was behind just one week. A month later, he was behind just one day. At birth, his weigh was 8 lb 4 oz and his height was 20.5" which is between 75 and 90 percentile for a newborn. Currently, his growth chart is excellent. The calcium deposit went away two month later after the first screening and during the whole pregnancy his heart function was excellent. At birth, he didn’t have heart problems. The enlarged brain ventricles didn’t increase, and for some reason, a few ultrasounds showed normal size ventricles. At birth, he did eye contact the first time I held him. He is accomplishing his milestones as any other baby. Our doctors say that Tommy pays attention, he is aware of his environment and he is curious, which it is important to learn. The ultrasounds showed improvement in his fetal development. The doctors told us by the first ECHO that he was a healthy baby boy with a normal body structure without heart defects and the possibility of not having the features on his face. The doctors always said that anything wasn’t for sure until the baby was born. The ultrasound is just a screening, not a diagnosis. We don’t know how these improvements happened, but we believe God listened to our prayers.

The last three month of my pregnancy, we spent every Wednesday evening in our doctor’s office to check our baby’s heart function and movement. Every time that we were there, Tommy used to make the nurses' job harder. He never staid in the same place. He kicked so hard that he made me jumped on the bed one day. He was very active in the womb. Now, he keeps active. He hit his head two days ago by trying to get the little guy (himself) he sees in the mirror.

After Tommy was born, he spent 13 days in the NICU because he had pulmonary hypertension. Doctors think it wasn’t related to the syndrome. It may happen because I had complications during labor. My body didn’t accept the Pitocin very well. I had contractions less than a minute apart, reducing the oxygen to the baby. The nurses tried to give me more Pitocin, but the baby’s breathing dramatically decreased. I remember the doctors and nurses running trying to stable our baby. By the third time that this occurred, I was ready to tell them “I want a c-section”, but the baby was monitored and he was alright. After 20 hours of labor, we finally had our son. Those 13 days were a torture for us by wondering if something else will come up. After he was released from the hospital, we have fully enjoyed our son. He is just like a typical kid accomplishing all his milestones, but with an extra chromosome.

Our baby boy just turned 7 month, Yahooooo! He is not showing delays right now. He has accomplished some milestones earlier. He is working on sitting without assistance, he does tripod sitting and he is able to let his hands free for a little while. Our pediatrician told us that we shouldn’t say that he is doing good for having Down syndrome because he is doing outstanding as a baby. We love our pediatrician! He never mentions anything about Down syndrome in front of Tommy because he just sees a baby.

I think the mission of my son in this world is to unify people because he did when he was an unborn baby. The exact moment he was born, there were people praying for him. We participated in the fund-raising for the Body Walk, organized by the local Down syndrome association, and we got the 7th place, but “we were the most diverse team” with donations from different states and countries, such as: England, Ireland, Belgium, Mexico and Panama. Now, People look at him an they can not resist to tell something to him, specially ladies, ha, ha, ha (a proud mom). He is adorable that you want to squeeze him. The features of the syndrome are very mild. Some people notice it and others don’t. Once, we went to the hospital and we had to tell to the nurse that he has Down syndrome and she looked at him a little bit surprised.

Nobody can predict how our kids are going to be. We can just love, stimulate and encourage them to reach their goals and they will become amazing people. We don’t know what the future grants for Tommy, but we know that he will go beyond our expectations.

I congratulate and offer my respect to all parents who have a kid with a genetic disorder because we are true examples of love, faith, care, courage and patience because we never give up, even the challenges seem impossible to conquer. I applaud to all those kids with a genetic disorder because they teach to the world what books cannot, to be true fighters for their lives.

God bless you all!