What to be thankful means for us

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

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

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

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

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

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

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

Happy Thanksgiving!

Rosa, Adam, and Tommy

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

Aptitudes of a swimmer

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

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

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

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

Little helper

My mommy was organizing her cloth yesterday.

I wanted to help, but she thought

I was disorganizing her cloth. 

Messy me

You are used to seeing pretty photos of me.

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

even though, I am messy.

Funny straws as a therapy

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

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

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

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

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

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

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

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

I am finally teething, Yahoo!

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

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

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

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

Eating popsicles is fun!

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

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