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!