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!