Sunday, September 25, 2011

Bombo Chair?

Hi, I am Francis I am a two month old baby boy. My mommy has a dilemma. When I was a newborn, my mommy and my daddy put me in the Boppy pillow as they used to do it with Tommy (my big brother), but they soon realized I was moving. Believe or not! I could raise my head high enough that I almost sat up, so I couldn't control my balance and I went forward. My mommy and my daddy decided not to use the Boppy pillow with me anymore. But when I was about a month and half, I began to use my tummy muscles to sit up while my mommy and my daddy were feeding me. My mommy told my daddy that she was thinking to use the Bumbo chair when I turn 2 months, but my daddy said 'NO' because I was too little. But I keep sitting up while they are holding me!


I had my 10 weeks check-up last Friday. My pediatrician said that I am like a 4 month old baby because I am bearing weight on my legs, using my tummy muscles to sit with assistance, a good head control and lifting head and shoulders when lying on my tummy and I move side to side because I am trying to roll over.


Today, I also initiated my first game with daddy.  My game is simple, but FUN! I speed the pacifier out and my daddy put in my mouth over and over again. I smile, laugh and giggle every time my daddy pick the pacifier up and put it in my mouth. We had a good time playing this morning. My daddy, my mommy and my big brother where laughing at me. 


I am doing many things at my age. I can gurgle, coo and blow raspberries. I am also making expressions and sounds to communicate. My mommy knows when I want to listen to the mobile toy attached to my crib because of the expression of my eyes and face. I visually tracks moving objects. My mommy has a image glue to a cardboard and she is using it with me to play visual tracking. I discovered my little fingers, so I am sucking on them once an a while. I am beginning to grasp objects. I am a grown-up baby!


My mammy is wondering if I am ready for the Bumbo Chair.
She gave it a try this afternoon and I can perfectly sit.
BUT DON'T TELL MY DADDY! 

Friday, September 23, 2011

Vote for Tommy to WIN Pediped Casting Call!

Vote for Tommy to WIN Pediped Casting Call. The winner will feature in the Pediped website and promotional materials. The winner will also get a $750 gift card to spend in Pediped shoes, as well as, all expenses cover to travel for the photo-shut.
Pediped is a well-recognized shoe brand that designs stylish shoes to comfortably fit and ensure healthy foot development. This is the shoe brand that Tommy wears because he has low muscles tone, so his feet muscles can still get input for its strengthening while wearing shoes. Search for Thomas or Thomas, St. Charles. Here is the Link to vote: http://www.pediped.com/castingcallgallery.aspx  


This is the photo I submitted for the contest

About Pediped
"pediped® footwear was created in 2004 by Angela and Brian Edgeworth. After their first daughter Caroline was born, Angela started to do a lot of thinking about footwear and the kind of shoes that would be best for her child. She wanted a shoe that was comfortable and stylish and that could be worn both indoors and out. Most importantly, she wanted a shoe that was healthy for her daughter’s feet.
After doing a lot of research, Angela discovered that doctors recommended barefoot walking or soft leather sole shoes, but the choices for infants and toddlers were limited.That is when Angela and her husband Brian decided to create the perfect shoe, which would be “the next best thing to bare feet”.
pediped® has become one of the fastest growing children's footwear brands in the U.S. and offers more than 120 designs spanning EU sizes 17-33. pediped’s three footwear lines include Originals® (soft soled shoes for children ages birth to 2), Grip ‘n’ Go™ (soft rubber soled shoes for children 9 months to three years) and Flex® (rubber soled shoes for children 1-8 years). pediped® is sold all around the world." www.pediped.com

Friday, September 16, 2011

Wednesday, September 14, 2011

The "R" Word

The "R" word is very controversial.  It is not about right or wrong. It is about RESPECT for those who happen to be sons, daughters, brothers and sisters regardless their developmental challenges. I have never comment about what I think about the "R" word. I personally don't use it, not in Spanish nor in English. I remember when I was a child, my mom always told me: "Never joke or laugh about other peoples' disadvantages, you never know when it can be you." She is right!

I have the opportunity to play with developmental challenge kids when I was in Elementary school. I knew they had challenges, but what we all did in my class was to play with them, they were included. I don't remember how many kids were in the IPHE (translation: Panamanian Institute of Special Abilities) class, but I remember all of them have different diagnosis, and there was a child with Trisomy 21, who was very popular in the whole school. I have a vivid memory of this little kid giving high five to one of my favorite teachers. There were not differences!

When I was in 3rd grade, one of my neighbor's kid was in the same class with me. One day, my mom and my neighbor were talking at my house. I remember my mom called me to come to the leaving room. My neighbor explained to me her daughter's diagnosis and why it was so important that I played with her and helped her in the class. What was told in the conversation to me, I never told it to any classmate in my class. I did what I was told to do because it made me feel good. I learned about TOLERANCE and ACCEPTANCE. I learned that we all are DIFFERENT, but we can be INCLUDED.

My mom was always teaching us about everything she could, but the best of all, she didn't forget to teach us about moral values. Are you doing it with your kids?


Please watch this powerful video that
teach about TRUE LOVE.
So next time you use the "R" word think about it.

This video was created by the daughter of the leader
of our local Down Syndrome Parents Group. She didn't know 
her daughter posted this video in YouTube until recently.
She decided to share it with the group.

Monday, September 12, 2011

Tommy's new diagnosis —Sensory Processing Disorder

Deeply in my heart, I had a feeling long time ago about Tommy having some type of sensory issues.  The way I realized he was having some type of sensory issues it was when he began to do repetitive movements, such as, head shaking, rocking himself and sucking his tongue. My husband and I decided to take Tommy to a private paid evaluation when he was 20 month old. The evaluation didn't show any concerns at that time, it might be because he was too young.

Strange repetitive movements kept appearing, as he was getting older, such as: rolling his tongue, shooting doors, spinning, jumping on the bed. But he also stopped doing some of these repetitive movements and some of these movements where age appropriate, but I never felt they were right. Previous to that, we noticed Tommy was sensitive to some sounds, but he overcame most of the aberration for the specific sounds because we intentionally exposed him to these sounds until he could tolerate them. But we still noticed he gets over-responsive when he doesn't know where a strange sound comes from or high pitch sounds, including some people’s voice.

Understanding what pooled the trigger
I have been very optimistic and proactive since Tommy was prenatally diagnosed. This brought me to provide a sensory smart environment for him without knowing he was having Sensory Processing Disorder, so I provide the sensory balance Tommy needed during his infancy and toddler-hood. I began to see Tommy’s sensory issues, as soon as, I took the Fisher-Price bouncing zebra away because he was getting too tall for it. Around the same time, I quit giving Tommy his daily massages —they were providing the sensory input he needed. Tommy began to rock himself and rolling his tongue in an incontrollable way —this was his way to calm himself because he wasn’t getting the sensory input I was providing. I talked to our EIP team at that time about my concerns and a sensory diet was created for him. Any of us didn't noticed any serious concerned after this.

By the end of January, Tommy got very sick due to RSV and he had to be hospitalized. He spent 13 days in the hospital. Kids who are seriously ill with the RSV turn aggressive, so the best solution is “Sedation.” Being sedated enormously affected his balance and he lost strength in cord muscle, too; he couldn’t walk for several days.

Tommy received services from the EIP (Early Intervention Program) until the week before his birthday. This means he had just a month of services after he was realized from the hospital on February 2nd. Tommy used to receive aqua therapy once a week since he was 18 month old, but we stopped to taking him due to the services ended. Therefore, he suddenly stopped getting the sensory input from the aqua therapy.

Tommy had to face more changes and challenges in a short period of time after he was realized from the. He got sick again and again, and again. He hasn’t been so sick before and so often. Something wasn’t working inside his body. This was the first sign for Asthma due to RSV. While all this was happening inside his body, Tommy had to handle other big change in his life, Pre-school. School is an over stimulating environment for children that have sensory issues. This made his sensory system even more disorganized causing problems in his performance at school. When we have our firsts meeting with the school district, I mentioned the possibility of Tommy having sensory issues. Eventually, the school district decided to make an evaluation; which showed that Tommy has sensory issues.

I started to notice Tommy wasn’t the same child after the hospitalization. His repetitive movement increased. He didn’t enjoy bath time as before (it may be because this remind him the first time he took his bath at the hospital). He began to showed aggressive behaviors. His attention span decreased to almost nothing. He began having difficulty following directions. He seems deaf, but his hearing is fine and so on. Big Red Flags! Tommy needs help.

The 13 days he was at the hospital were a torture for him, too many changes and emotional situations at the same time. Therefore, his sensory system couldn't carry over all the sensory information and got completely disorganized. Additional to these, he wasn’t breathing properly for about 14 days, so his brain wasn’t receiving enough oxygen. There were a few occasions he took the mask off and fight against the nurses. While he was fighting he wasn’t getting the oxygen and he turned blue in one occasion. This was a huge transition in his life that I don't think any 3 year old can handle it so easy.

What is Sensory Processing Disorder?
I understand what sensory processing disorder is, but it is not quite easy for me to explain. Especially, when one heard that there are 7 senses instead 5 senses. But I have found this short video that explains it in an easy way.

I also found a trailer of Autistic-Alike: Graham's Story. The film makes it clear that there is a difference between autism and sensory processing disorder. Washing the little boy in this video, it is like watching Tommy because their behaviors. Please watch the video so you can understand a little bit more what families and kids go thru when a child is diagnosed with Sensory Processing Disorder.

Sensory Processing Disorder can happen to a child with a typical development  or a child with developmental challenges. Please be aware of the signs.


As soon as, Tommy's sensory system get organized he will be able to easier improve in his gross motor skills, fine motor skills, social skills and attention span, so he can overcome some of the developmental challenges he is facing due to his genetic disorder.

What is the next step?
Finding what was affecting his sensory system was the next step. But before we got a private paid evaluation, which diagnosed him with Sensory Processing Disorder. I can understand now why he behaves so differently out of the house by insolating himself from other kids, family members or a big group of people. Why he is sensitive to certain type of noises. My little boy is a fighter because he is looking for ways to communicate what’s going on inside him; this is the reason why he made it up his on sing for people to rub his head when he was a year old, why he is excessive passionate about music, why he enjoys so much big cities, why he does repetitive body movements. These things calm him. Now that we have a diagnosis, we can find a treatment that will help him to overcome his sensory issues. There is HOPE!

Searching for a Certified OT. Finding a certified therapy center that specialized in sensory issues is crucial to get the right treatment. I found a specialized therapy center that is very passionate about helping kids with sensory issues, which is located at 15 minutes from my house and 1 minute from Tommy's school. 

Working with the school and daycare. We need the cooperation of the School and daycare staff for Helping Tommy to overcome his sensory issues so he can be successful in any environment. Our OT will be leading the strategies that should be implemented at home, school and extended care, so Tommy can meet the goal of over coming his sensory issues in approximately a year and half or so.

Going back to the old days. I will retake the activities that were providing a calming effect on Tommy to deal with his sensory issues. Those are:
  • Therapy massages. I will massage him daily with deep pressure as I used to do it before ­ — they are great to increase blood oxygen that will help him to be more calm and pay better attention because the brain will get more oxygen.  
  • Swimming. This is a great activity for Tommy getting the sensory input he needs. Once a week, we will take Tommy to the swimming pool as we used to do it before. I started last week, and he enjoyed so much. I found a great source that will guide me on how to teach swimming to Tommy.
  • Sensory Smart Environment. Finding new toys that can please Tommy’s sickness for movement. So he can get the sensory input he needs by himself. Follow the sensory diet and create a sensory box I can carry with me everywhere we go, so I can help him to calm in any enviroment.

Sleep Test. I will request a sleep test. I know the doctors were not concern by the time he was realized from the hospital because his lower oxygen level while sleeping was 96%. I even asked if he needed a Peak Flow Meter to read his oxygen levels at home, but the doctor said that it wasn’t necessary for him. But I want to make sure Tommy is receiving enough oxygen in his brain because this essential to function and pay attention.


I believe in my son's potential. I keep praying for wisdom 
and finding new ways to help him. I will never give up on him. 
I keep my high expectations for him because the sky is the limit.
Any challenge is a predicament, any sacrifice is enough.
This is what unconditional love is about. 

Friday, September 9, 2011

Dealing with asthma

Tommy had a check-up appointment with the pulmonary doctor yesterday. The doctor was very please because Tommy had just two asthma episodes during the summer and they were not long episodes. He checked Tommy's overall health and he said: Tommy is healthy!

The doctor thought in the possibility of taking Tommy out of the preventive asthma medicine, but as a precaution, the doctor decided just to decreased the asthma medicine; so Tommy's asthma doesn't get worse during the flu season.

With the arrival of the winter season, Tommy's asthma can get worse because he has viral asthma, this means, Tommy's asthma is caused by virus. It is good and Bad! It is good because his asthma will go away as he gets older because his immune system will get stronger. It is bad because there is not medicines to treat virus and he is more sensitive to virus, which means he will get sicker than other child that catches the same virus. So this let him on his own fighting against any virus he can catch.

I am very grateful for blogging because I have found great blogger friends, who also have a love one with Trisomy 21. I am very thankful with Andi Durkin the writer of Down Syndrome: A Day to Day Guide because she contacted other bloggers and moms to gather great information to boost Tommy's immune system. Thanks Andi!

This visit to the pulmonary doctor has made me feel so good because we were so used to having a healthy child who always impressed his doctors for how healthy he was –No major health complications due to the syndrome; no common colds, except a few times during cold and flu season and a good growth pace. But I know things can change due to the syndrome, so I keep praying for my boy being healthy. If he is healthy, my husband and I are strong to fight against any consequence of the syndrome.

The whole family will be working on being healthy this winter.