Wolf in sheepskin

Enjoy the transformation

of our little wolf

I think when people see Tommy, they should think

what beautiful, sweet, calm and quiet kid.

But the truth he is a wolf in sheepskin.

He is not sweet because he bites people. He is not calm

because he is all over the house; even although,

he doesn't walk yet. He is not quite because he

screams or sings with his plush animals all day

long that makes me crazy, but he is a beautiful kid.

We love our little wolf in sheepskin.

Baby Gap

When I look at my son, I just see a beautiful child that can be in the cover of magazine regardless the syndrome. The Baby Gap polo shirt was sponsored by Aunt Melissa.

A sweet poison for my son (Part 1)

How many of us love desert, candies, chocolate and sugary food. Well, I personally don't look at "refined sugar" as a sweet taste. Sugar is poison for our health, specially for my son who has a genetic disorder (Trisomy 21).

My interest for my son's nutrition started when I discovered he is high risk for juvenile diabetes because of the Trisomy 21 and family health history. This interest have brought me to discover that "refined sugar" is not good for a person who also has hypotonia (low muscle tone) and hyperthyroidism (unbalanced Thyroid hormone), which is my son's case.

Why sweeten foods are not good for a person with low muscle tone?

According to Kelly Dorfman, M.S., L.D.N., "In hypotonia, a big gap exists between what a child consumes and healthy cellular nutrition. While neurologists often attribute hypotonia to imbalances in the parts of the brain that control tone, low tone always has a nutritional component. Muscles suffering from nutrient deprivation remain underdeveloped, or if adequately developed, fatigue easily. Whether a youngster is born with low tone, or acquires it through cellular malnutrition, good nutrition can improve the condition, while the tendency toward hypotonia often remains. Eating the perfect diet is only the beginning in low tone. The nutrients must get to the cells, which must then convert them into usable energy.

Three basic strategies can improve inefficient energy delivery and boost output: increasing available nutrients, enhancing nutrient delivery, and improving energy production. All of these can be achieved with specific nutritional supplements. Nutritional therapy for low tone is a long term management plan, not a quick fix.

Increasing Available Nutrients through Diet

The first step is to control the intake of concentrated refined sugars, such as candies, sweetened drinks, and desserts, while increasing the amount of protein in the diet. People with hypotonia tire easily so they often reach for sweets and starches as quick sources of energy. Protein foods tend to contain more concentrated nutrients than sugary items, which have many calories and few vitamins and minerals. Improving nutrient density is critical because inefficient energy production result is loss of nutrients."

Why sweeten foods are not good for a person with hypothyroidism?
Several of the hormones of the endocrine system are involved in controlling the rate and direction of metabolism. Thyroxine, a hormone produced and released by the thyroid gland, plays a key role in determining how fast or slow the chemical reactions of metabolism proceed in a person's body.

Hypothyroidism is a metabolic disorder. According to Steven Dowshen, MD, Hypothyroidism is caused by an absent or underactive thyroid gland and it results from a developmental problem

or a destructive disease of the thyroid. The thyroid releases too little of the hormone thyroxine, so a person's basal metabolic rate (BMR) is low. Hypothyroidism slows body processes and causes fatigue, slow heart rate, excessive weight gain, and constipation. Kids and teens with thiscondition can be treated with oral thyroid hormone to achieve normal levels in the body.

In the book, Eat Right or Die Young, Dr. Cass Ingram explains that high sugar intake can indeed adversely affect the thyroid:

"At (a high) level of sugar intake, there is a risk of damaging or even destroying the adrenal and thyroid glands. These delicate glands must work overtime to help the body deal with excess sugar. After awhile under the pressure of constant bombardment of refined sugar, these glands literally burn out. To be sure, the glands are capable of regenerating and their function can return if you make the appropriate dietary changes and get off the sugar. There is a risk for permanent damage if you continue your sugar consumption. The more sugar consumed over the years, the more likely it is that you will have burned out a portion of your adrenal and thyroid glands."

You can imaging how much work have to do the thyroid glands of a person who has Hypothyroidism to process the "refined sugar" in a piece of cake. Because hypothyroidism usually leads to excess weight, people with the metabolic disorder need to follow a low-calorie diet, limit sugar, fat, and cholesterol.

Why refined sugar is poison?

Robert H. Lustig, MD, UCSF Professor of Pediatrics in the Division of Endocrinology, explores the damage caused by sugary foods in the population. You can imaging how major damage it can cause in a person that has a genetic disorder. Below is the link to a video where Dr. Lusting tell us why refined sugar is poison. http://sites.google.com/site/superdownsyndrome/diet-nutrition/Sugar

The best we can do for our son is to provide him with a healthy diet, including items from all 5 food groups: fruits, vegetables, breads, dairy products, meat and fish and a lot of water. Eat whole grain food; limited the processed food; read the food labled to look for low sugar percentag, get label food as "Sugar Free" and limit the consumption of sugary food. We keep a healthy diet for our son, which I think, it's one of the reason he has a good health. As his parents, we try to set the example for him and eat healthy, too.

Eat healthy, it is a good thing!

From crayons to dry markers (Part 2)

The turtle desk has been a good choice for the variety of toys Tommy has. We can use the Melissa and Doug Magnetic Chalk / Dry Erase Board with the easel. But the best of everything, he has fun.

From crayons to dry markers

My boy is growing up! I can see how his brain keeps developing, allowing his cognitive and fine motor skills emerge stronger; even although, he is not walking yet. I can see he is focused in other important areas for a child development; while, his gross motor skills are improving. Then, he will be walking sooner than we know it.

The fact he is able to play with age appropriate toys make me very proud of him. His grandparents gave to him a Melissa and Doug Magnetic Chalk / Dry Erase Board last Christmas. We scribbled on the board this evening. When I saw him scribbling, I realized he is not a baby any more. He definitely knows what to do. See the video below of Tommy erasing and scribbling with the dry marker.

His Physical Therapist recommended an easel to challenge his fine motor skills and work on his arm and shoulder muscles. I got Step2 Sit & Doodle Turtle Desk, which allow him to scribble on his own, instead of having me holding him while he scribbles on a flat surface. I am sure he will have fun with his turtle desk and I will have less back pains. ; )

Note: If you are subscribed by email, you may not be able to see the video. To see the video visit our blog: www.asuperbaby.blogspot.com

A Genuine Pearl in a T21 Shell

"Valuable pearls occur in the wild, but they are very rare". We are lucky that we got a highly valued gemstone, OUR SON. Our Genuine Pearl is very rare, fine, admirable, and valuable that came in a T21 Shell. To really see the pearl oyster, you have to open the shell. To see what a child with Trisomy 21 is capable, you have to see with your heart.

Video of Tommy's Skills

24 Month

This short video briefly shows

what valuable is our genuine pearl.

There are many other skills that were

not included.

Note: If you are subscribed by email, you may not be able to see the video. To see the video visit our blog: www.asuperbaby.blogspot.com.

My 2 year old check-up

Back in October 2009, I had my last visit to my pediatrician office. But since then, many things have changed. One of them is that Dr. Shereman won't be my doctor anymore. He is retired! My mommy and my daddy didn't told me anything, I figured it out this morning when my daddy took to see my pediatrician. I noticed we arrived to the same building complex, but we took other entrance and then we were in a different office with different people. Then, I realized I won't see Dr. Sherman anymore. I was sad but then I met beautiful nurses who told my daddy "I am cute". Of course, I paid more attention to what they were saying and then I felt better.

I met my new pediatrician: Dr. Ayers. She agrees with all my other health care providers. She said I am healthy guy. I am a tall guy, even although my mommy says I am tinny. I am 80th percentile tall in the growth chart for typical kids, which means I am almost 3 feet tall (A secret: half of my mommy's height). My doctor said I am a chunk, which means my weight is perfect for my age. She also said the word "Unusual". My mommy and my daddy have heard it since I was an unborn baby. It is unusual that a folk like me with T21 doesn't have any major health issues, no common colds or ear infections. I just have hypothyroidism, which is mild and it is not affecting my growth. Waaooo! If I wouldn't have thyroid issues, how tall I would be?

My mommy and my daddy like my new pediatrician because she can understand them very well because she also have a daughter with different abilities. I am don't know her diagnosis, but it is good to know that my mommy and my daddy have found a good doctor who also can understand raising a child who needs extra help. I think that "Papa Dios" (God) listen to my mommy's prayers to put the right people in our path.

I had fun visiting my doctor, but I will miss Dr. Sherman because he accepted me for who I am and not for what I have. He always told my mommy and my daddy, he could picture me doing more things that we couldn't imagine.

A hug to Dr. Sherman to say good bye and

kiss to Dr. Ayers to welcome her to my life.

A sweet poison for my son (Part 1)

How many of us love desert, candies, chocolate and sugary food. Well, I personally don't look at "refined sugar" as a sweet taste. Sugar is poison for our health, specially for my son who has a genetic disorder (Trisomy 21).

My interest for my son's nutrition started when I discovered he is high risk for juvenile diabetes because of the Trisomy 21 and family health history. This interest have brought me to discover that "refined sugar" is not good for a person who also has hypotonia (low muscle tone) and hyperthyroidism (unbalanced Thyroid hormone), which is my son's case.

Why sweeten foods are not good for a person with low muscle tone?

According to Kelly Dorfman, M.S., L.D.N., "In hypotonia, a big gap exists between what a child consumes and healthy cellular nutrition. While neurologists often attribute hypotonia to imbalances in the parts of the brain that control tone, low tone always has a nutritional component. Muscles suffering from nutrient deprivation remain underdeveloped, or if adequately developed, fatigue easily. Whether a youngster is born with low tone, or acquires it through cellular malnutrition, good nutrition can improve the condition, while the tendency toward hypotonia often remains. Eating the perfect diet is only the beginning in low tone. The nutrients must get to the cells, which must then convert them into usable energy.

Three basic strategies can improve inefficient energy delivery and boost output: increasing available nutrients, enhancing nutrient delivery, and improving energy production. All of these can be achieved with specific nutritional supplements. Nutritional therapy for low tone is a long term management plan, not a quick fix.

Increasing Available Nutrients through Diet

The first step is to control the intake of concentrated refined sugars, such as candies, sweetened drinks, and desserts, while increasing the amount of protein in the diet. People with hypotonia tire easily so they often reach for sweets and starches as quick sources of energy. Protein foods tend to contain more concentrated nutrients than sugary items, which have many calories and few vitamins and minerals. Improving nutrient density is critical because inefficient energy production result is loss of nutrients."

Why sweeten foods are not good for a person with hypothyroidism?
Several of the hormones of the endocrine system are involved in controlling the rate and direction of metabolism. Thyroxine, a hormone produced and released by the thyroid gland, plays a key role in determining how fast or slow the chemical reactions of metabolism proceed in a person's body.

Hypothyroidism is a metabolic disorder. According to Steven Dowshen, MD, Hypothyroidism is caused by an absent or underactive thyroid gland and it results from a developmental problem

or a destructive disease of the thyroid. The thyroid releases too little of the hormone thyroxine, so a person's basal metabolic rate (BMR) is low. Hypothyroidism slows body processes and causes fatigue, slow heart rate, excessive weight gain, and constipation. Kids and teens with this condition can be treated with oral thyroid hormone to achieve normal levels in the body.

In the book, Eat Right or Die Young, Dr. Cass Ingram explains that high sugar intake can indeed adversely affect the thyroid:

"At (a high) level of sugar intake, there is a risk of damaging or even destroying the adrenal and thyroid glands. These delicate glands must work overtime to help the body deal with excess sugar. After awhile under the pressure of constant bombardment of refined sugar, these glands literally burn out. To be sure, the glands are capable of regenerating and their function can return if you make the appropriate dietary changes and get off the sugar. There is a risk for permanent damage if you continue your sugar consumption. The more sugar consumed over the years, the more likely it is that you will have burned out a portion of your adrenal and thyroid glands."

You can imaging how much work have to do the thyroid glands of a person who has Hypothyroidism to process the "refined sugar" in a piece of cake. Because hypothyroidism usually leads to excess weight, people with the metabolic disorder need to follow a low-calorie diet, limit sugar, fat, and cholesterol.

Why refined sugar is poison?

Robert H. Lustig, MD, UCSF Professor of Pediatrics in the Division of Endocrinology, explores the damage caused by sugary foods in the population. You can imaging how major damage it can cause in a person that has a genetic disorder. Below is the video where Dr. Lusting tell us why sugar is poison.

The best we can do for our son is to provide him with a healthy diet, including items from all 5 food groups: fruits, vegetables, breads, dairy products, meat and fish and a lot of water. Eat whole grain food; limited the processed food; read the food labled to look for low sugar percentag, get label food as "Sugar Free" and limit the consumption of sugary food. We keep a healthy diet for our son, which I think, it's one of the reason he has a good health. As his parents, we try to set the example for him and eat healthy, too.

Eat healthy, it is a good thing!

A new addition to our family

Yesterday evening, My husband and I received a text message announcing the birth of our first nephew. We love our two beautiful nieces, but we are excited for Tommy because he will have a boy as his playmate. The poor guys has too many girls around. Our nephew's name is Benjamin and he was born at 6:59 p.m. It was a very beautiful moment to look at Benjamin so cute and defenseless, expecting to learn everything form us, his family.

Holding Benjamin brought us memories

when we held Tommy for the first time.

How big Tommy was and he didn't look like

a newborn, he looked like an older baby.

Tommy kept his eyes wide open, screening

everybody in the room. My son did eye contact right away

when I held him, he recognized my voice.

What a beautiful moment!

Now that I am a mom, I realized why my mom was so protective and why sometimes I wasn't allow to go to some places. Holding Benjamin make me realized that one day Nora, Mia, Benjamin and Tommy will grow up and we will learn the most difficult lesson of our lives: How to let them go. When this moment arrives, we will have completed our mission of love, nurture and guidance and we will be extremely proud of them.

We love you Benjamin!

My sister-in-law holding her baby boy

A proud daddy holding his baby boy

Uncle Adam

Benjamin's Nurse

She is a close friend of our family

Wiggles! Our new physical therapy tool

Our Land Physical Therapy will be directed for a new Physical Therapist (PT) because our actual PT is in maternity leave. Our Land PT looked for her replacement, who was her professor at the University. The new PT is very passionate about helping kids with Hypotonia (decrease muscle tone) to walk. She, better than anybody else, can understand what having Hypotonia means because she has Hypotonia.

The new PT confirmed that Tommy is holding to walk off because he has most of the skills to independently walking. According to her, It is very common that kids with Hypotonia, regardless what diagnosis, tend to take the minimum support to not make an effort and try get around by themselves; which is what happens with Tommy. Before getting into this conclusion, our new PT tested him. She stood Tommy on an rocker board and she was putting her finger tips on different part of his body while she was racking the board. Tommy leaned toward where he was feeling the finger tips and his legs got loosed. He also had a better posture and kept his balance when he was on the rocker board. Our first PT and I noticed Tommy did better when he learned to crawl on the couch and when he learned to cruise in the crib. The couch and the crib have unstable surfaces. But I didn't pay much attention to it until now. According to our new PT, the wiggle creates awareness in his muscles and joints. Making easier for him to get stabled while he is on unstable surfaces. That's why he enjoys so much roughhouse play and any type of extreme movement such as, the turbulence on an airplane. Now, we understand better our son's physical needs.

I feel a relief because I finally got an answer about why Tommy needs more sensory input. Last year, Tommy had a sensory evaluation to make sure he wasn't having a sensory processing disorder or autism. We did this evaluation because he had some type of sensory play, which are behaviors that a child engages in that are “odd,” repetitive, sometimes obsessive, but they are all inputting information into the “broken” sensory channel. The evaluation showed he doesn't have any type of sensory processing disorder, he just needs more sensory input. Even although, our team and the evaluation said he doesn't have a sensory processing disorder, I didn't get a reasonable explanation until now.

The techniques will be working on are:

• Climbing to strength his upper body, which we are currently doing.
• Not more hand supported to walk. From now on, he has to walk holding our pants while we walk backward.
• Improving his hips weight shifting. Put our hand on lateral position on his hips without holding the hips. Our hands will work as a guide for the weight shifting on his hips.
• Increasing opportunities for standing alone with his hands on a vertical flat surface.
• Working on independent standing on a bench. Practice independent standing on a high bench to make it easier for him. When he masters independent standing on a high bench, we will introduce a lower bench until he is able to independent standing from a lower bench.
• Sitting and standing on an unstable surface to create more awareness on his muscles.

We are very excited with this news strategies because Tommy is responding really good and we have just a few days working on this techniques. From now on, we will provide Tommy with more opportunities to play in an environment with a lot of wiggles. I am glad there is an inflatable play center close to our house that I was thinking to take Tommy when he independently walks, but I have changed my mind. These play center has open play days during the week, which we will star to attend. We are going to have a lot of fun with our wiggle time!

Myth & Truth (Part 1)

I have always fund very interesting how myths create a misconception in our society. "Columbus's efforts to obtain support for his voyages were not hampered by a European belief in a flat Earth (1)." Of course, having a child Trisomy 21 (T21) has made me deal with many myths about people with T21. Being part a multicultural family have let me compare how they vary from country to country and what the truth is.

1st. Myth

My favorite myth in the USA is People with Down syndrome are always happy.

My favorite myth in Panama is People with Down syndrome easily get mad.

Truth: People with Down syndrome have feelings just like everyone else in the population. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

My son is 2-year old and he is having the same range of emotions as a 2-year old without the syndrome. He started to have temper tantrums when he was getting closer to 1 1/2 year old, which is very typical. When he cannot reach his goal or we don't let him to do something, he will show frustration by crying, yelling, fighting, scratching, hitting, or biting. When he didn't have teeth, I used to laugh if he bit me. But now that he has teeth some teeth, I protect myself because he bit on my face one day. He gets very happy when he sees us coming back from work, when it is time to play with daddy or when mommy goes to his room in the mornings. What toddler doesn't get happy to see mommy and daddy!

Tommy refused to go upstairs because

he wanted to watch TV with Daddy

People with T21 are human been regardless the syndrome; they all comes from families with different customs, cultural backgrounds, social status, religious believes, moral values, and a unique set of genes. The combination of these factors creates their unique personalities, as yours and mine.

___________

(1) http://en.wikipedia.org/wiki/List_of_common_misconceptions