31 to 21: Play to win (Part 3)

The Cardinals won! They are the CHAMPIONS. The joy and the emotions are hard to describe. I heard people saying if the Cardinals wouldn't won tonight, they will still be champions because of the historic game yesterday night. The Rangers are a great team and they didn't made it easy for the Cardinals. I think they should be proud and come back next year as the DINAMIT team, as David Freese referred about them. The Cardinals showed the result when you believe and NEVER GIVE UP. So I belive in my son's potential and I will never give up on him. I will be fighting for him to reach his greatest potential.

GO CARDINALS!

31 for 21: Play to Win (Part 2)

Reporting live from the Ortiz-Lane Residence... Oh my Goodness! I am just with the kids, but we are going crazy here with the World Series Championship. I am taking advantage of all the emotion of the game to do sensory stimulation with Tommy. He is needing sensory input right now because this week his sensory issues have been more challenging that what I have seem before. I am doing a lot of music (maracas, tambourines, drums, etc), jumping and bouncing that goes along with game. I will try to take pictures of or craziness here, but it may not be possible because Francis has to Sleep. Soon, I will have to take Tommy upstairs because it is time to go to bed. He will star his first dance class tomorrow morning.

31 for 21: Play to win!

We cannot be more excited in our family due to the baseball game tonight. Our favorite team, The Cardinals. Our favorite player, Albert Pujols, He has a daughter with Trisomy 21. I had the opportunity to meet his wife and his daughter at the beginning of this years because of The Albert Pujols Family Foundation. Pujols and his family are committed to the families with a love one with Trisomy 21. So I just can wish the best to the Cardinals, which are a huge supporter of the Down Syndrome Association of Greater St. Louis. WHAT AMAZING GAME! We are ready for game 7.

GO CARDS! GO CARDS!

31 for 21: Listening Center

"Sensory processing is a term used to describe how the seven senses of the body are processed by the nervous system. It is the nervous system to perceive sensory information, process it, and produce a response. When sensory information is perceived by the nervous system, the brain must determinate what sensation is and if it is "okay". When the nervous system has difficulty accurately identifying information or if it interprets that information as being "no okay", then a child may react in a manner that seems disproportionate to the circumstance. The child may avoid sensory experiences, or may seek additional sensory experiences..." (Leaps and Bounds, Sensory Center).

In Tommy's case, he is under and over responsive to sensory information. He is over responsive to auditory information. This is the reason he cannot hear a crowded talking, clapping or laughing. These noises disturb him and he panics, but if I am with him I know how to clam him down. What I do is to explain to him why people are doing those noises, and it seems he understand what I am saying because he looks around like it make senses what I am saying and he doesn't cry. This make me think he is learning to control his sensory issues. I cannot say that Tommy's has sensory issues caused by a noisy environment because he loves to be in big cities. What I have observed on him is that noises coming especially for a group of people is what disturbs him.

I am always searching for ways to help my son to reach his full potential and overcome his developmental challenges. This how I found out about headphones as helpers for kids with auditory sensory issues. So we bought the "Caliphones" because they are inexpensive and cute. We took my husband old iPod and uploaded most of Tommy's favorite songs. I tried them yesterday in our way home. I observed Tommy's response and this is what I observed:

• Tommy's sickness for visual input decreased while wearing the headphones.
• His repetitive tongue movement wasn't present during the way home.
• He didn't need oral stimulation.
• His mouth was nicely close.
• He didn't grind his teeth.

This headphones are for kids from 3 to 10 years old. They have volume control, slotted baffles to protect against accidental perforation on the internal speaker and ambient noise-reducing ear-cups.

After my observation, I  hostly think that Tommy's sensory issues are not that sever and he will overcome them. We just have to work on it and he will shine like a rock-star.

31 for 21: All in a day's work

Today, Tommy has a little accident at the playground. Tommy hasn't have too many little accidents like this one. He has had just 3 band aids, including this one, in his 3 years of life. Tommy felt off the tire-swing while trying to get off. He scratched the inside of his left eye and cheek. Well, It is "all in a day's work" for a 3 year old who is exploring around regardless his diagnosis.

31 for 21: My teenager in a preschooler body

Today, Tommy didn't want to hang out with us. So he went upstair, shot the door of his room and lay down in his bed with his buddy Elmo. This made me think how it will be when he is a teenager. We are so attached to him that it will hurt us seeing Tommy preferring chatting and spending more time with his friend than with us. But at the same time, this is what we look for.

31 to 21: A dream come true

It is amazing watching Tommy going around with his trike. I never thought it will be that fast. It seems every time he rides his trike, he improves his riding skills. He just have to work on steering the trike, specially in the corners. We never worked on keeping his feet on the pedals or teaching him how to stop the trike, he just knew. I remember the first time Tommy rode a tricycle in Wall-mart Sport Department. I pushed the tricycle and Tommy just followed the pedals movement without struggles. I commented it with my mom and she told me: "You will see, he will learn to ride the tricycle very fast." My mom was right! When she said that, I smiled because I have the book "Gross Motor Skills for kids with Down syndrome, which explains the process how to teach our kids to ride a tricycle. I have also hear from therapists and parents how hard this is for our kids.

Tommy has exceeded our expectations
one more time.

I searched for many bikes before making the decision what bike will be appropriate for him. So I found adaptive bikes in adaptivemall.com, but they are too expensive. One day, I went to Toys R Us and found the Huffy Hi low Trike with a very similar design to the ones that are sold in adaptivemall.com

Huffy Hi-Low trike features:

This bike benefit any child who is learning to ride a tricycle, regardless if it is a child with developmental challenges or a child with a typical development. I think the most important feature is the Huffy pedals 'no slip grip.' Because they child will gain confident right from the beginning, so he or she will be more than willing to ride the trike over and over again. 

According to the huffy.com, this trike has 3 important stages:

• Strider. By holding onto the Strider handle, your child balances while walking behind the Hi-Low Trike.

• High Rider. Your child learns how to pedal the Hi-Low Trike! The Steer Straight^™ Technology and convenient Strider behind-the-seat handle make teaching easy.

• Low Rider. As your child gains confidence, the trike easily converts to the low rider position. It’s faster and more fun when your child is ready!

31 for 21: A milestone day for my boys (Jumping and Rolling)

Wow! My boys have accomplished the same day two important gross motor milestones. Tommy has been very focused on jumping. Last week, he discovered he could try jumping form the coffe table to the couch. So he has been practicing until today because he JUMPED. My husband and I could witness this moment and we were very excited for him. We know that he cannot take his gross motor skills for granted. He began to attempt to jump a year ago. His mind was ready, but not his body. He still has to practice more to improve his jumping skills. But it was amazing seen him getting in his tiptoes and jump. On the other hand, Francis began to roll over since last week, but we couldn't see it because we were not at home. He rolls over in both directions back to Tommy and Tommy to back. He still struggles rolling over tummy to back. I I just wish I could film it. My video camera had the battery too low.

31 for 21: Tommy's Speech (Part 2)

I am very proud of my boy! His Speech therapist thinks that Tommy's speech is advanced for his age. She mentioned in our conversation that many typical kids the same age than Tommy don't have all the Speech sounds Tommy has. If a child don't have all the speech sounds before seven, there is nothing to be worry about it because it is considered in the 'normal' range. Thinking in her words, I remember it is not the first time I have heard or realized this. I think Tommy's advanced speech is due to many factors, but the most important factor is that he has been blessed with the ability of "imitation" that opens the doors for learning.  This a skill we discovered in Tommy since he was very little.

When he wants to say a new word, he deeply focused in the person's mouth. He looks very focused at the lips movement and he mimics the movement of person's lips. People that knows Tommy knows he likes to practice his speech sounds in front of the mirror. When there is a word he cannot say, he practices that word for days, weeks and even months until he can clearly say it. It is something he enjoys!

Factors have influenced Tommy's speech

• Being raised in a multicultural environment where he hears two languages, English and Spanish. For example: For a monolingual child the sound for the letter "l" is just "l", for Tommy is "l" and "elle."
• Being exposed to listening to different languages, such as: Native american, Chinese, Russian, Portuguese, French, German, Hebrew, Japanese among others. It is not for him to learn the language, it's to train his mind to differentiate the sounds. 
• Listening to letter sounds since he was a baby. When Tommy was a baby, I used to say all the Spanish vowel sounds just for him to listen. When he was getting older, I added more sounds. Specially, the sounds that are commonly hard for a child with Trisomy 21, such as: f, l, r, s, v, x and z. Here a video of Tommy doing the Spanish "R" sound when he was a baby. The Spanish R sound wasn't teach to Tommy, he picked it up by just listening to me talking in Spanish.
• Learning the short sounds of the alphabet with the Zoo-phonics. Tommy does most of the short sounds for the alphabet. Lately, I have heard him clearly saying the letter "Z" short sound. 
• Learning to use a straw cup, as well as, blowing bubbles at a very young age.

I never thought this will help Tommy to have advanced Speech sounds, I just did it because I want to exposed him to the speech sounds so it could help him with his speech intelligibility. Some how it is working because I have heard several comments of people that they understand what he says.

Related Articles:
Our art of language -Learning the alphabet

Oral Motor

31 for 21: High Expectations (Part 3)

At the beginning of the past summer, Tommy pretended to play "Office" for about a month. It was so cute watching him everyday after we came back home climbing to the chair and pretend play working on the computer and writing. It is what he sees when I worked from home. So he may follow my foot steps in the graphic design field because it is what he has been seeing since he was a baby. Always playing beside me while I am working. This pictures warm my heart and make me stronger in keeping my high expectations for him.

My little disigner

31 for 21: Cutting with scissors

This year have been a rough year for us. I am more exhausted than ever. So I haven't been very focused on Tommy's therapies as I used to do. This make feel the guilt of not doing enough to help my son; but at the same time, I feel Tommy needs a break sometimes. After all, he is a child!

I am getting inspired again in this month, as my way to create awareness and showing how capable our kids can be.  I am ready to help Tommy with all those milestones he was ready to master before getting sick. One of this big milestones is to independently cut with regular scissors. Currently, Tommy can snip with adapted scissors with guidance. He is able to hold the paper with one hand and cut with the other hand. He does about two or three cuts by himself. We are also working with him to learn holding the scissors by himself.

Necessary Adaptations for Tommy successfully snips

• Using advertising cards that come in the mail and construction paper. I sort different paper thickness. I have grouped them by thin card stock, thick card stock and heavy card stock. This allows me add complexity in the activity. I have realized that thick and heavy card stock are harder for Tommy to cut, which creates frustration. So we are working with think card stock and construction paper for now. Using advertising materials is a way of showing Tommy the real world. Before cutting we look at the cards and point to letters, numbers, photos, and them some. It is a good way for language reinforcement.
• Making sure Tommy sits properly. I have put a step stool underneath the table so he can rest his feet on it. otherwise, his feet would be hanging that will create instability and will make him worried about his sitting position that will cause loosing his focus on the task. 
• Keep the activity short from 2 to 3 minutes and make two or three reputations through the day. 
• Use several adapted scissors to generalize the idea of cutting and find the scissors Tommy feels more successful with to avoid frustration.

Cutting advertising postcards are more exciting for Tommy

than cutting other paper material, such as: 

greeting cards or blank card stock.

(It may be from mommy's graphic design genes, ha, ha, ha).

31 for 21: A bond that last for ever

My boys are beginning to enjoy each other after a rough start. It was hard for Tommy having other child at home. He pooled the baby's hair, scratched his leg, tried to threw the baby away of  his bed. He still gets sad once and a while if daddy is paying too much attention to Francis. But things have suddenly change. Several times, he has handle me the baby bottle without me requesting his help. He tries to comfort Francis when we are busy and cannot get to see Francis right a way. So Tommy has made up his own way to comfort his little brother. When Francis cry, Tommy runs towards him and puts his finger for Francis to suck (it works, ha, ha, ha). This evening he decided that it was time to feed his little brother, so he took a little bottle that looks like a baby bottle to feed Francis. I could take a picture of this priceless moment. Francis enjoys so much having Tommy around. He smiles at Tommy and suck Tommy's fingers without complain. He follows Tommy across the room with his eyes. I am sure Francis will be Tommy's best fan.

A bond that will last for ever.

For Tommy and Francis brotherhood 

is all what matters, regardless Tommy's diagnosis.

Down Syndrome: Attitudes and Expectations

I have never seen before a doctor dominating the topic about Trisomy 21 from the medical and family stand-points as Dr. Brian Skotko, who is not a father of a child with Trisomy 21.

"Dr. Skotko has dedicated his professional energies toward children with cognitive and development disabilities. He is one of the specialists in the Down Syndrome Program at Children's Hospital Boston. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School. Dr. Skotko recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s "On Point," and ABC’s "Good Morning America." Dr. Skotko serves on the Board of Directors for the Massachusetts Down Syndrome Congress, the National Down Syndrome Society, Band of Angels Foundation, and Lettercase. He further serves on the Professional Advisory Council to the National Down Syndrome Congress."

Dr. Skotko is the best proof of how a child with trisomy 21

can changes others people's life for better and ever.

If you want to know more about Dr. Skotko,

please visit his website at:
http://www.brianskotko.com/index.php

31 for 21: High Expectations (Part 3)

Tommy's art work

A designer by nature ; )

I get excited every time I get Tommy's artwork from school.

when we got the news 3 years ago, we didn't know 

how far he could get. But we never doubt about his potential.

We don't know what he will be doing 20 years from now.

But during these 20 years to come, we will nurture his development

to achieve his full potential.

31 for 21: Tommy's Omelet

Tommy is a good eater. He has period of times where he doesn't want to eat much and period of times where he eats a lot, as any other child. The other day he ate three bowls of organic cereal for breakfast. We are blessed with Tommy being a good eater. There are a few foods Tommy doesn't like. Those are egg and avocado. But he ate them in an omelet when we ate breakfast at a local restaurant a couple of weeks ago. So I cooked an omelet for him at home. He ate it! It is a very nutritional omelet, full of good fat which is essential for brain development. 

Tommy's omelet

Ingredients:

4 eggs

1/2 red pepper, chopped in small pieces

Cheddar cheese

1 avocado, chopped in small pieces

Procedure:

Mix eggs, chopped pepper and cheddar cheese. Blend all the ingredients together. Pour the mix in a pre-heated pan, which should previously be oiled with organic olive oil. Once the omelet is done, cut it in small pieces, serves together with the avocado and frozen blueberries in a plate with Elmo's decoration, Of course! 

31 for 21: Features associated to Trisomy 21

Why I am going to have a child that won't look like me. When I read this in a online forum when I was expecting Tommy, it hurt me so much because I already loved my baby. I knew for sure he won't look like a monster, regardless the facial features he could get.

The physical characteristics of a person with Down syndrome are not exclusive to them. Those characteristics are also present in the 'typical' population, but not with the same frequency and amount as in a person with Trisomy 21.  Facial features may include, but are not limited to:

• Flattened nose. Tommy's flattened nose bridge is not exclusive from Trisomy 21. His flattened nose bridge is a heritage from my mom's genes. 
• Tongue trust. Tommy's tongue trust is not exclusive from Trisomy 21. My sister has tongue trust, but it didn't affected her as is affecting Tommy.
• Small ears. Tommy's small ear are not exclusive from Trisomy 21. I do have small ears, too.
• Slanting eyes. Tommy's slanting eyes are not exclusive from Trisomy 21. I also have slanting eyes. I have even heard comments that Tommy's eyes are just like mine.
• Epicanthal fold (The inner corner of the eyes may have a rounded fold of skin). Tommy doesn't have Epicanthal fold, but my typical son does.  
• The hands may have short fingers. Tommy's short fingers are not exclusive from Trisomy 21. Tommy's daddy also have short fingers. My sister in law have commented several times how Tommy's hands look just like my husband's.
• Single palmar crease. Tommy's singles palmar crease is not exclusive from Trisomy 21. Ironically, my husband and I have a single crease. Mine is in my right hand and my husband's is in his left hand. Tommy's single crease is in his right hand like mine.
• Bigger gap between the big toe and second toe. Tommy's bigger gap between his toes is not exclusive from Trisomy 21. My sister does have a bigger gap between the big toe and second toe in both feet.

Ironically, my son who has trisomy 21 does look like my husband and I. But we are still figuring out whom our typical child looks like. He does look Hispanic, but it is hard to tell specifically whom he looks like. So now, I have an answer for the person who wrote in that forum: Not because my son, Francis, doesn't look like us we don't love him. We know all cells of his body have our genes. As far as he grows, we will know how much he will look like mommy and daddy because of his personality, behaviors, preferences, and them some. I don't think it will be different if Tommy wouldn't look like us because of the facial features link to Trisomy 21.

Doing this post, I realized the pictures 

were taken when both were days 

before turning 3, what a coincidence!

(Look at their hands)

31 for 21: Tommy's Speech

This year hasn't been easy for Tommy. But regardless all the challenges he is facing, his speech seems to be his strength in the area of communication, according to his current Speech/Language Therapist. Since the middle of May, Tommy speech has increased. He is repeating a lot after us. Once an while, it seems we are communicating. One day, my husband and I were talking during dinner time how much we love our kids and Tommy looked at  both of us and said: I love you!

He loves to sing, and he is incorporating more real words into his singing time (which is all day long). So I am also singing more with him to introduce new concepts and words. Currently, Tommy says about 200 words, but he doesn't use them very often. But it makes very happy when I hear comments from people at school that they can understand what he is saying. The other day, someone told me that she heard Tommy counting in Spanish (uno, dos, tres). She asked him: Tommy, what are you doing? Are you counting in Spanish? and she counted in Spanish and he repeated after her. She was very excited for him, so am I. This person didn't know I am teaching him to count in Spanish and she understood what he was saying.

To help Tommy to increase his vocabulary, I am using signs again because he learns the words faster with the signs. So I am debating if I should get a bigger baby signing time DVD set. Currently, I am using the DVDs we have since he was a baby.  I also put a signing time chart on my refrigerator, so I can remember the signs to talk to Tommy using the signs.

31 for 21: Our Mission Statement

To keep our perspective what we want for our son's future, I wrote a mission statement I share with everybody involved in Tommy's development. I have a copy of our Mission Statement in our son's EIP file at school. I will share it you today:

Mission Statement:

Our mission as parents is to acquire high quality special education services for our son, Thomas Aidan Lane, that will prepare him with the academic knowledge, skills and standpoints he needs for a future post-high school education. During the period our son is part of the special education program would like to work in conjunction with IEP team, including all professional involved in our child’s education, so we can see Tommy’s communication skills improve so he can openly express his feelings and needs in English and Spanish by sustaining a conversation in any environment that will allow him to be included into the multicultural background he is part of. The academic knowledge in conjunction with the bilingual skills our son can achieve are essential for him to get a paid employment in a field of his choice; therefore, he can life a productive and independent life, to the maximum extent possible. ~ Mr. and Mrs. Lane

31 for 31: My son's immune system

When Tommy got hospitalized at the beginning of this year, I got a lot of quetions in my mind about his immune system. I had a child that had a good health regardles his diagnosis, but when he got sick with a simple cold his immune system couldn't fight back the virus, so in less than 5 days I had a child who couldn't breath on his own. The  change from a strong immune system to a weak immune sytem was too drastic. So I began to search for imformation at the hospital while he was sleeping. Here is when I made the question to myself, Should we try vitamin therapy with Tommy?


I knew about vitamin therapy since Tommy was in the womb. I even found out about a doctor who was using them in other state and I was planning to travel to meet this doctor. But it was too much to handle. I didn't have my family close to me in those hard moments. So I felt I want to enjoy my pregnancy regardless the diagnosis of my son, so we didn't travel. But I did improve my diet more than what it was already. I prepared most of my meals from scratch and increased the amount of folic acid, which was already higher than the amount recommended –I talked to my OB and she said it was OK, it won't be harmful. I drank a lot antioxidants (pomegranate) because a research conducted by Washington University revealed that Pomegranate juice may prevent newborn brain injuries: "Mice whose mothers drank pomegranate juice had brain injuries less than half the size of those found in other mice." This may be the reason why Tommy did so good as a baby.


Going through many books and booklets at the hospital, I found out about Vitamin D3 and many other supplements for a strong immune system. I wanted to know more about how all those nutrients work on in our bodys and how they boost our immune system. I decided to check for the list of nutient, vitamin, minerals and antioxidants in the multivitamins specially created for people with Trisomy 21. Then, I understood why these supplements were selected to create these multivitamins. They support the immune system, brain, thyroid funtion and muscles. A good perfomance of the thyroid is scential for a strong immune system. Many kids with Trisomy 21 have thyroid disfunction, including Tommy. Most of our kids have low muscle tone and fatigue easily. Most kids with low muscle tone have Carnitine deficiency that causes fatigue because the body cannot turn the fat in energy.  This antioxidant is included in the multivitamins designed for  people with Trisomy 21.  Small amounts of carnitiare is Ok for people who has hypothyroidism, in big doses may worsen the hypothyroidism. 


Searching for multivitamin options, I found out that there are currently three multivitamins in the market that target people with Trisomy 21. Today, I will just talked about my first multivitamin option, MBS PLUS (Dietary Supplement) by NutriChem Pharmacy and Clinic. 


Should I give it a try? Which vitamin should I should choose for my son?
I called to the NutriChem lab to know more about MBS PLUS. They explain to me I didn't have to order the vitamins, they prefered I tried them first. Therefore, they sent free multivitamins samples and the book Down syndrome and Vitamin Therapy: Unlocking the Secrets of Improved Health, Behaviour and Intelligence. The book talks about how good nutrition keep our kids healthy, the importance of supplements and how they work interconnected; the effects of certain drugs in people with Down syndrome, including antibiotics. The importance of having between two and tree bowl movement per day because decrease the risk for disease. This book also mention the casein and gluten intolerance in kids with Down Syndrome. It also talks about how the oxidative stress affects our kids faster than the typical population. The author even high-light that it is not a cure, but a way our kids can life a healthier life. Therefore, if they are heartier they can learn better. 

The multivitamin topic is controversial among parents with kids with Trisomy 21. In fact, The National Down Syndrome Congress states: "To date, no vitamin or mineral nutritional supplement is known that will significantly alter the intelligence, physical characteristics or behavioral features of Down syndrome and, thus, none are supported by the National Down Syndrome Congress."


The book has good insides about how to keep our kids healthy regardless you decided to use MBS PLUS or not. The books in the USA costs about $30 and $40 in Canada. Currently, NutriChem is giving free MBS PLUS samples with a FREE copy of the book. To get the book and MBS PLUS samples FREE call at 1-888-384-7855.

31 for 21: High Expectations (Part 2)

Despaired to find information to help my unborn baby back in 2007, I went online as many other parents when they get the news. But in my search, I found out about someone who changed my perspective about Trisomy 21.  Her name, Bernadette Resha. If you goggle Bernadette Resha, you will see how much information about her you can find online. When you see her paintings, you wish you could have her talent.

Bernadette's Bio
"Born in Nashville TN with Down Syndrome, Bernadette has become well known in the art community worldwide. Her exposure to the art world and culture started as a child attending as many art galleries, museums, concert halls and plays as her time would allow. From an early age she was encouraged to draw and color in her own style as a form of expression and therapy. This has resulted in a body of work which documents an artist developing a unique style entirely her own. With an artist grandmother and a mother fully committed to allowing her to use this medium of self expression for as far as she would care to take it, Bernadette now exhibits in numerous art galleries, art and craft shows throughout south east and attends many conventions throughout the United States showing and selling her work." www.bernadetteresha.com

I still remember when I saw her website. It was like a parenthesis in all the chaos around my husband and I. Eager to know more about her, I also found out she is a marry young lady. I  have the opportunity to see a video of her wedding because her videographer posted two videos online. What a beautiful wedding! So she gave me the inspiration I was needing in my journey to rase my son without ruling out any of my dreams for him. Click Here: Andi Cam Production, you can see the videos of her wedding.

Bernadette and her husband

Photo by Andi Cam Productions

Sometimes, I wonder what people think about me when I say my high expectations for Tommy. Sometimes, I wonder if they feel sorry for me because they don't think my son can rich very high due to myths and lack of information about Trisomy 21. But I am glad I am the one in this journey because, day by day, I can see the wonders God can do. I forgive the unawareness of those who don't know about our kids' potential. My advise to any parent out there who are receiving the diagnosis or are struggling accepting the diagnosis, keep dreaming about your son's or daughter's future as you would do it with a typical child. Along the way, they will be challenges; but, you won't know you child's potential if you don't give her or him the opportunity to try it.

Paintings by Bernadette Resha

You can buy her paintings and merchandise online at

her website:

www.bernadetteresha.com 

THE SKY IS THE LIMIT!

31 for 21: High Expectations

Since I knew that I was expecting a child with Trisomy 21 (T21), I kept my high expectations for him. I didn't rule out any possibility and opportunity for him to reach his full potential. I knew since the beginning we would have to face challenges; but with love, patient and stimulation everything can be possible. We are not going to give up until he will attend to a regular school, speak two languages, and graduate from college. 

In our journey, I have found other moms who also think as I do. I am raising my son to be a productive member of this society, this means, I want for him to get a job that allow him being independent —Not a job that pays $10 per hour. We will nurture him with opportunities to discover his talents and he will choose what to do with those talents. One talent I want for Tommy to explore is the graphic arts because it is an universal talent. He could work any where in the world without restrictions as a graphic designer. More than talent it could be a way to start his professional career. The best of all, he will have my guidance and 20 years from now to learn about the design software because I am a graphic designer.

Christmas card 2011

This is my latest inspiration.

31 for 21: Riding a bike (Part 2)!

I have to post twice today because I didn't have time to post yesterday. My first post is about a note that Tommy's Physical therapist sent home.

"Tommy worked on:

• hands & knees. tossing bean bags to put in directly in front of him.

• Tall knees. Hitting a big suspended ball and he kept both arms extended.

• Riding the Kettler trike without adapted pedals and my advantage of use of a handle"

Keeping the feet on the pedals is hard for kids with or without low muscle tone when they are learning to ride a bike, but for Tommy it has been easy to overcome. We haven't worked on him keeping the feet on the pedals. He did it since the first time he rode a tricycle at the Sport department in Walmart a year ago. Every time I was in Walmart with him, we used to go to the Sport department to try the different tricycles.

This is a little blessings I am grateful for. This is a little blessing that make him my super boy (baby).

31 for 21: Riding a bike!

Tommy's greatest challenge is gross motor. Because he lost so much strength at the beginning of this year, I decided not to continue working on riding a bike to avoid frustration. Even although, he was able to kept his feet on the pedals, he wasn't very interest as before because it was harder for him.

I decided to give it a try again this evening. He loved it! He pedaled three times and got propulsion because of the sidewalk has an inclination, so he could pedal about 8 feet. I wasn't expecting this and I am glad it happened during the Down syndrome awareness month.

31 for 21: Thank God for my kids!

Once, I was criticized for the name of my blog because my older son has Trisomy 21 (Down syndrome). But some how, I feel both of kids are super babies. They both are successful in their own way. I truly appreciate I can kiss and hugs them today, it is something I don't take for granted.

Tommy was prenatally diagnosed with Trisomy 21 when I was 3 month pregnant. My pregnancy was considered HIGH RISK as soon as he was diagnosed. It was considered high risk because most natural miscarriages happen because the human fetus has a genetic disorder. So the possibilities he could die in my womb were high. But while monitoring his development in the womb he was exceeding all the doctors' expectations. Once, he was born he confirmed to all of us how strong he is. He was a good size baby because his weight was 8lb 4oz and his hight 20.5.' He didn't any major complication of syndrome –no heart defects. According to several studies done by the doctors, Tommy's internal organs were typical developed.  He rolled over in his first months, while he was an infant he accomplished many milestones righ on track and some ahead. He didn't has delays until he was about 7 or 8 months. During his first 3 years, he wasn't sick very often —not common colds. But the beginning of this year, things changed for him. He got very ill due to the Respiratory Syncytial Virus (RSV). My boy spent 13 days in the hospital. After the hospitalization, his sensory issues got worse and it also affected his development. We were so happy having him at home after he was realized from the hospital, but it was hard to realized he lost many skills – he had a huge regression in his development. But not matter what, my boy is strong, and day by day, we are working together to get those skills back. I have seen improvement in the last weeks.

Francis was considered a miscarriage in progress when I was 3 month pregnant. The doctors told me go home and wait, there is nothing you can do to stop it. Around the same time, we got the results that we were high risk for expecting a second child with a genetic disorder, but we didn't go for further testing. We were devastated! But we kept our faith that my baby would be fine. After being in bead rest for a few days, the bleeding stop. My baby was alright! My OB detected I had a tearing in the placenta, but it healed fast. After this, the placenta was too close to the cervix, so it was developing placenta previa. If it didn't improved in a few weeks, I had to go to bed rest for the rest of the pregnancy. I was just 4 months pregnant. But we kept being strong and didn't pay much attention to it. A few weeks later, the placenta went up. After this, my pregnancy normally developed. When Francis was born, we felt a huge relief by knowing he was alright. Ironically, he was smaller than his older brother, his weigh was 7 lb and his high was 19.75.' Having Francis, hasn't been much different than having Tommy. He is exceeding our expectations as Tommy did. He seems advanced for his age, which we didn't realized until he had his 10 weeks check-up. Francis and I are enjoying his new skills, so we both sit on the floor to read —I sit behind him  I put a book in front of him to keep his attention and he can sit very well.

Not matter what the prognostics were for them before they were born, they both exceeded all the expectations. They are here today building their story, so I can tell their story. Many unborn babies may not have the change to build their stories because they were prenatally diagnosed with a genetic disorder.  Any baby that is born with or without a genetic disorder deserve to be loved and protected regardless the circumstance they are coming to this world. Not matter the circumstances, we chose our  babies first!

31 for 21: Awarness

5th Annual 31 for 21 Challenge

I have accepted the challenge to post once (at least) a day for the thirty one days in the month of October. This is a way  to raise awareness of Down syndrome. It will very challenging because I am going to go back to work full time, I have to take care of my baby and I have to help Tommy with school and therapies. It is going to be a busy month!