Tommy is motivated to move forward. We never thought that giving him a little break from his therapies would motivate him to be more mobile. His PT was right, he has a mind of his own. He reminds me when I was a child.
Tuesday, September 15, 2009
Monday, September 14, 2009
Constantly Progressing
We are a young family that is raising a boy with responsibility and a positive attitude, which is not much different from other young American families. The extra chromosome has changed a little bit of the way most people raise their kids. But because of this extra chromosome we are learning many things about early intervention that has empowered our parenting skills.
We want to share all the amazing progress our boy is having, because he is a true example that we all are God’s kids who have been blessed with a set of skills, but sometimes it takes a little bit longer for those skills to develop.
Tommy playing skills are constantly improving. He started to pretend feeding and give me my drink a while ago. We also pretends to talk on the phone. He put his hands on his ear, his phone toy or the actual phone when he talks on the phone to "ita" in Panama. He is also pretending to brush Fred Bird's hair. He is hammering his peg toy and playing the drum. His toy preference is changing because he likes more simple toys. He is stacking blocks. His bigger tower was from 4 empty shoe and toy boxes. He was able to match his puzzle (the sheep figure) three times a few weeks ago. We are now playing with flash cards and he recognizes 42 cards, Yahoo!
Our boy is a singer. He likes to sing in baby language. He sings and does hand play with Twinkle-Twinkle. I love to see him doing the shapes of the diamond when we sing Twinkle-Twinkle. He also enjoys the song: Row, row your boat. We sing “Head, shoulders…”. He knows where his head is, and he is leaning where his nose, mouth and feet are. He likes to sing even opera with Daddy on the car (Those two have fun when they are together).
Our boy is a good imitator, too. He likes to imitate sounds and actions which is very important to learn. He does like the cow, sheep, turkey, horse, dog and car. When it is time for desert and he sees the little bowl, he does "mmmmm". I went to Baby’s R Us the other day and I suddenly heard Tommy doing “mmmmm” and looking at the baby food. He also does the refreshing sound from the old Pepsi commercial.
Tommy has good communication skills. He is becoming verbal. He says a few words, those are: hi, no, yeah, agua (once an while), “tetita or teta” (milk or cup), and "tita or ita" means "abuelita" (granny) in Tommy's baby language. He also says "Hi dada" and "No ma". He said yesterday "Ok" while he was with his Speech Therapist. He already initiates waving and high-5 on his own to interact with others. Tommy does 2 gestures that he converted into sign language. One gesture is that he rub his head with one hand, this means he wants massages on his head. The other one is that he wipes his hands, which means use hand sanitizer. Once, I changed his diaper and I picked him up from the changer and he refused. He did the gesture of wiping his hands and I immediately understood I didn’t use the hand sanitizer. He let me hold him after I used the hand sanitizer. I was extremely happy because his expressive communication is coming along.
Tommy's self-care skills are very good. I think this is because he doesn't have sensory issues. He likes to "bush" his hair and his teeth (Well, his gums because his teeth are taking forever to come out). He also takes his cloth off with a little bit of help and he is trying so hard to put his cloth on. He is actually able to put one leg of his pants on. Impressive! His Occupational therapist says that taking his cloth off is age appropriate, but trying to put his cloth on is for an older kid.
We want to share all the amazing progress our boy is having, because he is a true example that we all are God’s kids who have been blessed with a set of skills, but sometimes it takes a little bit longer for those skills to develop.
Tommy playing skills are constantly improving. He started to pretend feeding and give me my drink a while ago. We also pretends to talk on the phone. He put his hands on his ear, his phone toy or the actual phone when he talks on the phone to "ita" in Panama. He is also pretending to brush Fred Bird's hair. He is hammering his peg toy and playing the drum. His toy preference is changing because he likes more simple toys. He is stacking blocks. His bigger tower was from 4 empty shoe and toy boxes. He was able to match his puzzle (the sheep figure) three times a few weeks ago. We are now playing with flash cards and he recognizes 42 cards, Yahoo!
Tommy loves rough-housing play. We think he will do extreme sports when he gets older. He enjoys to be up-side-down, to sewing very fast in the swinger, to wrestle with daddy, to bounce on his big ball (the faster the better for him). We have a lot of fun!
Our boy is a singer. He likes to sing in baby language. He sings and does hand play with Twinkle-Twinkle. I love to see him doing the shapes of the diamond when we sing Twinkle-Twinkle. He also enjoys the song: Row, row your boat. We sing “Head, shoulders…”. He knows where his head is, and he is leaning where his nose, mouth and feet are. He likes to sing even opera with Daddy on the car (Those two have fun when they are together).
Our boy is a good imitator, too. He likes to imitate sounds and actions which is very important to learn. He does like the cow, sheep, turkey, horse, dog and car. When it is time for desert and he sees the little bowl, he does "mmmmm". I went to Baby’s R Us the other day and I suddenly heard Tommy doing “mmmmm” and looking at the baby food. He also does the refreshing sound from the old Pepsi commercial.
Tommy has good communication skills. He is becoming verbal. He says a few words, those are: hi, no, yeah, agua (once an while), “tetita or teta” (milk or cup), and "tita or ita" means "abuelita" (granny) in Tommy's baby language. He also says "Hi dada" and "No ma". He said yesterday "Ok" while he was with his Speech Therapist. He already initiates waving and high-5 on his own to interact with others. Tommy does 2 gestures that he converted into sign language. One gesture is that he rub his head with one hand, this means he wants massages on his head. The other one is that he wipes his hands, which means use hand sanitizer. Once, I changed his diaper and I picked him up from the changer and he refused. He did the gesture of wiping his hands and I immediately understood I didn’t use the hand sanitizer. He let me hold him after I used the hand sanitizer. I was extremely happy because his expressive communication is coming along.
Tommy is signing and able to understand English and Spanish (too many communications going on). But we think the sooner the better. He signs all done, more, eat, baby and his version of drink. He learned to sign "baby" by watching the video. I knew because I was singing a fragment of the video song that says "baby, baby, baby signing time" and I saw him very excited signing his version of baby and you can see it in the following video.
Tommy's self-care skills are very good. I think this is because he doesn't have sensory issues. He likes to "bush" his hair and his teeth (Well, his gums because his teeth are taking forever to come out). He also takes his cloth off with a little bit of help and he is trying so hard to put his cloth on. He is actually able to put one leg of his pants on. Impressive! His Occupational therapist says that taking his cloth off is age appropriate, but trying to put his cloth on is for an older kid.
His gross motor skills are slowly progressing, but progressing. His Physical Therapist (PT) thinks Tommy is choosing not to be mobile. Because his decreased muscle tone is mild and his body is strong enough to get around. We got into the conclusion Tommy is being a little bit manipulative because mommy spoils him too much. She also thinks Tommy is tired of all of us pushing him to get mobile. He may probably want to try it on his own because he is very independent. Therefore, she decided to do something unusual, taking him out of the therapy for a little while. We did and we are astonish of the amazing progress he has done since then. He has gone from barely moving to a lot of motion. It sounds ironic, but it is true!
Our PT says that it is the first time she suggested "No therapy" as a therapy without having any medical study supporting the "No therapy". She talked to an experienced PT who said that it is very rare that this happens, but it happened to her twice in her 25 year of experience. Our PT thinks that Tommy has a mind of his own.
His therapists also think he is not walking yet because he seems to be completely focused on his communications, fine motor and playing skills than on his physical skills. The most important for us is that he is constantly progressing.
We feel God chose us for parenting Tommy because he knows our hearts. He knew Tommy would complete our lives with or without the extra chromosome. He knew we would fight for building a future of opportunities for our son.
His therapists also think he is not walking yet because he seems to be completely focused on his communications, fine motor and playing skills than on his physical skills. The most important for us is that he is constantly progressing.
We feel God chose us for parenting Tommy because he knows our hearts. He knew Tommy would complete our lives with or without the extra chromosome. He knew we would fight for building a future of opportunities for our son.
We don’t know what the future grants for Tommy, but we know he will keep surpassing our expectations.
Friday, September 11, 2009
Moments of my life
This slide show displays some spontaneous moments in my life. If you scroll down, you will see videos of me doing all kid of stuffs -Tommy.
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| Make a Smilebox slideshow |
Saturday, July 25, 2009
The True Story Of A Super Baby
My name is Thomas Aidan and I was born on March 16th, 2008. I am 7 month old. I wear some 9 month cloth because I am a big boy. I am a very happy and active baby. I enjoy life as any other baby of my age and I have an extra chromosome, which has made me “a super baby.”
My mommy and my daddy knew that I had an extra chromosome since I was a little tiny curious fetus. My mommy was about 3 1/2 month pregnant when her blood test showed that I may have Trisomy 21. It wasn’t until a month later that my mommy and I had the amniocentesis. I wasn’t scared when the needle got close to me. I could heard my mommy’s thought telling me “move to the other side”. I just did! I didn’t move until the doctor finished. After my mommy got home from the hospital, she rested the whole day and when my daddy got back from work, I kicked as hard as a little wild bull to tell them I was alright. I remember, they were so happy. How many mommies do remember the date of your baby first kick? My mommy does, it was on the evening of October 26th, 2007. It was a happy Friday.
My mommy and my daddy got the results from the FISH test on October 31st, 2007. It was positive, I had an extra chromosome. They cried a lot because they didn’t want anything wrong to happen to me because they already loved me without knowing how I would be. My mommy cried a couples of time, but two weeks later she was smiling and happy again because she always knew that I was alright. We had a special connection that just mommies are able to understand.
My mommy and my daddy never gave up on me. My mommy instead started a battle against Trisomy 21. One day I could feel she was very tired at work and she was thinking of me, she was petting her belly and I wanted to make her feel better and then, I kicked back. Immediately, she thought if she could keep me very active, it would improve any low muscle tone problems that I may have before birth. I was a very active unborn baby, but for my mommy wasn’t enough. She invented a prenatal stimulation program. Sometimes, I heard her making weird noises, shaking me and talking to me. I didn’t understand so much, but to make her happy I played the game. I kicked back in the same place I heard the noise. I used to have long conversations on the phone, while I was in the womb, with my Granny Nella and my Aunt Ibeth from Panama. I didn’t understand a word of what they were saying, but I kicked about three times because I knew they wouldn’t let me sleep if I didn’t kick where the phone was. Maybe my mommy’s crazy prenatal stimulation program helped me to be “a super baby” or maybe not. But what it is true is that I am surpassing all the expectation of having Trisomy 21 since I was in the womb, as my mommy said in her e-mail to announce my birth:
“Most of you know, or maybe not, that Tommy is a baby with Down syndrome. We feel that God has blessed us in all ways with our son because he has united people praying for him; even although they don’t know us. He was considered a very active unborn baby, when babies with Down syndrome are not active; He reached an average size when some babies with Down syndrome are under weight and tinny at birth; all his body structure is normal which means he won’t have most of the sever complications for having Down syndrome; his heart has an excellent heart rate and function, which means he won’t have an open heart surgery as many other newborns with down syndrome. Most babies with Down syndrome have low muscles tone, but Tommy seems to have good muscles tone and excellent reflexes. We couldn’t have a better baby, because he is already perfect surpassing all the expectations of the Down syndrome.”
I continue surpassing the expectations of the Trisomy 21 because I am accomplishing all my milestones at the same pace than typical kids and some of them a little bit earlier. The first time my mommy and my daddy saw me holding my head, I was just about 40 hours of being born. My pediatrician and my therapists agree that I have an excellent head control. I have smiled since I was 5 days old, the average for typical kids is when they are 1 month old. I tried to flip over since I was two weeks old. I finally flipped over for the first time on April 14th, 2008. I flipped over again on April 16th, 2008 (the day I was one month old) and I keep flipping over since then. I started mouth play with toys since I was 3 month old, most typical kids do when they are 5 month old. I have responded to my name since I was 4 month, this is an emerging intellectual skill that babies do between 4 and 7 months. Just say my name and I will look at you!
Now, you know my story of how I became a super baby! My mommy and my daddy have given me the opportunity to experience a full life of love, care, stimulation, toys, clothes, formula, baby food, a lot of diapers, kisses, hugs, and friends. Would you do the same?
My mommy and my daddy knew that I had an extra chromosome since I was a little tiny curious fetus. My mommy was about 3 1/2 month pregnant when her blood test showed that I may have Trisomy 21. It wasn’t until a month later that my mommy and I had the amniocentesis. I wasn’t scared when the needle got close to me. I could heard my mommy’s thought telling me “move to the other side”. I just did! I didn’t move until the doctor finished. After my mommy got home from the hospital, she rested the whole day and when my daddy got back from work, I kicked as hard as a little wild bull to tell them I was alright. I remember, they were so happy. How many mommies do remember the date of your baby first kick? My mommy does, it was on the evening of October 26th, 2007. It was a happy Friday.
My mommy and my daddy got the results from the FISH test on October 31st, 2007. It was positive, I had an extra chromosome. They cried a lot because they didn’t want anything wrong to happen to me because they already loved me without knowing how I would be. My mommy cried a couples of time, but two weeks later she was smiling and happy again because she always knew that I was alright. We had a special connection that just mommies are able to understand.
My mommy and my daddy never gave up on me. My mommy instead started a battle against Trisomy 21. One day I could feel she was very tired at work and she was thinking of me, she was petting her belly and I wanted to make her feel better and then, I kicked back. Immediately, she thought if she could keep me very active, it would improve any low muscle tone problems that I may have before birth. I was a very active unborn baby, but for my mommy wasn’t enough. She invented a prenatal stimulation program. Sometimes, I heard her making weird noises, shaking me and talking to me. I didn’t understand so much, but to make her happy I played the game. I kicked back in the same place I heard the noise. I used to have long conversations on the phone, while I was in the womb, with my Granny Nella and my Aunt Ibeth from Panama. I didn’t understand a word of what they were saying, but I kicked about three times because I knew they wouldn’t let me sleep if I didn’t kick where the phone was. Maybe my mommy’s crazy prenatal stimulation program helped me to be “a super baby” or maybe not. But what it is true is that I am surpassing all the expectation of having Trisomy 21 since I was in the womb, as my mommy said in her e-mail to announce my birth:
“Most of you know, or maybe not, that Tommy is a baby with Down syndrome. We feel that God has blessed us in all ways with our son because he has united people praying for him; even although they don’t know us. He was considered a very active unborn baby, when babies with Down syndrome are not active; He reached an average size when some babies with Down syndrome are under weight and tinny at birth; all his body structure is normal which means he won’t have most of the sever complications for having Down syndrome; his heart has an excellent heart rate and function, which means he won’t have an open heart surgery as many other newborns with down syndrome. Most babies with Down syndrome have low muscles tone, but Tommy seems to have good muscles tone and excellent reflexes. We couldn’t have a better baby, because he is already perfect surpassing all the expectations of the Down syndrome.”
I continue surpassing the expectations of the Trisomy 21 because I am accomplishing all my milestones at the same pace than typical kids and some of them a little bit earlier. The first time my mommy and my daddy saw me holding my head, I was just about 40 hours of being born. My pediatrician and my therapists agree that I have an excellent head control. I have smiled since I was 5 days old, the average for typical kids is when they are 1 month old. I tried to flip over since I was two weeks old. I finally flipped over for the first time on April 14th, 2008. I flipped over again on April 16th, 2008 (the day I was one month old) and I keep flipping over since then. I started mouth play with toys since I was 3 month old, most typical kids do when they are 5 month old. I have responded to my name since I was 4 month, this is an emerging intellectual skill that babies do between 4 and 7 months. Just say my name and I will look at you!
Now, you know my story of how I became a super baby! My mommy and my daddy have given me the opportunity to experience a full life of love, care, stimulation, toys, clothes, formula, baby food, a lot of diapers, kisses, hugs, and friends. Would you do the same?
Saturday, May 23, 2009
Communications skills
We have been monitoring Tommy's speech and language development since he was 6 month old because it is very common that kids with T21 can have problems in this area. We also introduced sing language to him at a very young age because it helps kids to learn more words faster.
Signing has many benefits, such as: increase self-esteem, reduce frustration for parents and babies, enhance language skills, and increase IQ. Tommy is currently signing "all done” and "More". He started to sing weeks before to our trip to Panama and he constantly does it now. He is learning to sign "milk". Maybe he will soon have a whole vocabulary in sing language. I have seen other kids who by age 0f 2 sing 30 or more words. We would like that Tommy could develop sign language as an extracurricular skill. See the video below, Tommy is signing "all done" and his variation of "more" (he claps and holds his hands).
According to the last assessment, Tommy's comprehensive language is in the average range for a kid of his age. Currently, he understands English and Spanish. His expressive communication has a mild delay, it could be because he has mild decrease muscle tone in his mouth and he is learning English and Spanish at the same time. As a bilingual person, I know that learning two languages is not easy, but it is beneficial. It is easier when kids learn a second language when they are little because they pick it up faster and they don't have accent. Be bilingual increases the IQ. It also gives better opportunities in this global world.
We thought it would take longer to hear Tommy's first word beside Ma-ma and Da-da, but he started to say “hi” at the end of his 12-month, but we didn't believe until our ST confirmed it to us. We were so excited because of his first word, and then on May 15, we were watching a Spanish program for kids about the water. The last word in the program was "agua"(water). Tommy just repeated "agua" with a perfect Spanish accent. I immediately told him say "agua" and he repeated. Days later, I took him for a walk and I was showing him the lake and I told him look at the "agua" (water) and Tommy again said "agua". I will try to capture the moments when he is saying hi and "agua". Our boy keeps surpassing our expectations.
Signing has many benefits, such as: increase self-esteem, reduce frustration for parents and babies, enhance language skills, and increase IQ. Tommy is currently signing "all done” and "More". He started to sing weeks before to our trip to Panama and he constantly does it now. He is learning to sign "milk". Maybe he will soon have a whole vocabulary in sing language. I have seen other kids who by age 0f 2 sing 30 or more words. We would like that Tommy could develop sign language as an extracurricular skill. See the video below, Tommy is signing "all done" and his variation of "more" (he claps and holds his hands).
According to the last assessment, Tommy's comprehensive language is in the average range for a kid of his age. Currently, he understands English and Spanish. His expressive communication has a mild delay, it could be because he has mild decrease muscle tone in his mouth and he is learning English and Spanish at the same time. As a bilingual person, I know that learning two languages is not easy, but it is beneficial. It is easier when kids learn a second language when they are little because they pick it up faster and they don't have accent. Be bilingual increases the IQ. It also gives better opportunities in this global world.
We thought it would take longer to hear Tommy's first word beside Ma-ma and Da-da, but he started to say “hi” at the end of his 12-month, but we didn't believe until our ST confirmed it to us. We were so excited because of his first word, and then on May 15, we were watching a Spanish program for kids about the water. The last word in the program was "agua"(water). Tommy just repeated "agua" with a perfect Spanish accent. I immediately told him say "agua" and he repeated. Days later, I took him for a walk and I was showing him the lake and I told him look at the "agua" (water) and Tommy again said "agua". I will try to capture the moments when he is saying hi and "agua". Our boy keeps surpassing our expectations.
Tuesday, May 19, 2009
Tommy's play time
Playing with toys is the best part of the therapies for us. Tommy spends a lot of time playing with Mommy and Daddy and it could be one of the reasons Tommy is progressing very well. Tommy's hands and body coordination are getting better every week. When we play with Tommy we don't look for perfection because understanding the concept behind the game is the most important. Perfection will come later with practice. Following there are some things Tommy is doing with objects, which are appropriate for his age.
• Throw and pick objects
• Open and close drawers
• Take the stocking rings out of the pole and stocks two rings in the pole, Yahooo!.
• Drop things into containers. The video below shows when Tommy was learning to drop in.
• Empty and fill containers. He needs more practice in filling the containers.
• Activate switches on the three button pop-up toy, activity table, little leaps video game control, and other toys. As an additional activity, he turns the light off his room. He likes to activate the peek-a-boo books with animal and transportation sounds.
• Spin whiles. For example, he began to spin the phone disk toy with his index finger.
• Pouring water in the bathtub, but he needs more practice. We are working on pouring into and out of containers.
• Put objects through openings. He is occasionally dropping the coins in the opening of his piggy bank toy. He likes more to move the coin up and down in the opening. We keep working on this game.
• Take pieces apart. He takes starts apart and pull the cord of his bathtub toy, but he needs more practice to put pieces together.
• Blow bubbles in the water when he drinks from a straw or from an open cup. This is a great emerging skill because it is the beginning to blow with a bubble blower.
• Manipulate simple locking devices. For example, he opens shoeboxes.
• Kick, throw and catch the ball. He perfectly understands the concept. One his therapist was amazed how precise is Tommy by kicking the ball, even although he is not walking yet. He is also trying to catch the ball, but it's too fast for him. Therefore, we use a balloon instead to play catching the ball. He likes to throw he ball to anyone who plays with him.
• Place objects in upright position. Tommy place his bubble maker toy in an upright position when it falls.
• Build a tower of blocks. Tommy is building a tower of two boxes. Tommy likes empty boxes more than his stacking blocks.
We are working on Tommy's playing skills and we would like to hear your advises, ideas, or activities that we can try to stimulate him. Please feel free to leave your comments in this blog or send me an email.
• Throw and pick objects
• Open and close drawers
• Take the stocking rings out of the pole and stocks two rings in the pole, Yahooo!.
• Drop things into containers. The video below shows when Tommy was learning to drop in.
• Empty and fill containers. He needs more practice in filling the containers.
• Activate switches on the three button pop-up toy, activity table, little leaps video game control, and other toys. As an additional activity, he turns the light off his room. He likes to activate the peek-a-boo books with animal and transportation sounds.
• Spin whiles. For example, he began to spin the phone disk toy with his index finger.
• Pouring water in the bathtub, but he needs more practice. We are working on pouring into and out of containers.
• Put objects through openings. He is occasionally dropping the coins in the opening of his piggy bank toy. He likes more to move the coin up and down in the opening. We keep working on this game.
• Take pieces apart. He takes starts apart and pull the cord of his bathtub toy, but he needs more practice to put pieces together.
• Blow bubbles in the water when he drinks from a straw or from an open cup. This is a great emerging skill because it is the beginning to blow with a bubble blower.
• Manipulate simple locking devices. For example, he opens shoeboxes.
• Kick, throw and catch the ball. He perfectly understands the concept. One his therapist was amazed how precise is Tommy by kicking the ball, even although he is not walking yet. He is also trying to catch the ball, but it's too fast for him. Therefore, we use a balloon instead to play catching the ball. He likes to throw he ball to anyone who plays with him.
• Place objects in upright position. Tommy place his bubble maker toy in an upright position when it falls.
• Build a tower of blocks. Tommy is building a tower of two boxes. Tommy likes empty boxes more than his stacking blocks.
We are working on Tommy's playing skills and we would like to hear your advises, ideas, or activities that we can try to stimulate him. Please feel free to leave your comments in this blog or send me an email.
Tommy, a funny guy
One thing that we like about Tommy is his emerging personality. He makes us laugh all the time. He likes to make funny faces. I have captured some of them in my photos. He started to occasionally do funny faces when he was about 10 month. Now, he constantly does it to make us laugh. Bellow are videos that briefly display Tommy's silly moments. The video tittles are: "The Fake cough" (This video doesn't display his best performance) and "The Latin Latin rhythm in my vines".
We are extremely proud of our son. The extra chromosome is not what our son is. It is what he has, which doesn't stop the little person he is. He is a very funny guy!
We are extremely proud of our son. The extra chromosome is not what our son is. It is what he has, which doesn't stop the little person he is. He is a very funny guy!
Tommy loves to hug Mommy
Expecting a baby with an extra chromosome didn't change our perspective of how parenting would be. Expecting a baby with an extra chromosome didn't change the love for our baby. Now, having a baby with an extra chromosome hasn't changed we can fully enjoy our son. Then, It won't change the illusion of a great future for our son because I can feel it every time he gives me a hug. (This video was taken when Tommy was 11 month old).
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