Asthma test results

Our waiting for the asthma test results is over. I took Tommy to his appointment at 10:30 am yesterday, June 9th, with the pulmonary doctor. When we got there I had to fill out some paper work about our  family health history. They did the routine check-up for hight, weight, blood pressure and temperature. All was perfect!


The doctor came to the room with a nurse and allergy specialist. They checked his healthy history and they asked me how often he was sick with pneumonia, ear infection or any other health issues before the RSV. Honestly, before the RSV Tommy didn't get sick quite often, just like any other child without the syndrome.  A month before RSV he got sick with a diarrhea for about a 26 days, but according to our pediatrician it was a virus that it was around and they had a lot cases like Tommy's. I also heard that other kids at the daycare were having the same issue. But after the RSV, he began to get sick very often.  I also mentioned to the doctor, Tommy got a virus with similar symptoms of a virus called Parvovirus, which make our pediatrician worry for my unborn baby because if it was this virus it could cause a lot of health issues to the baby. We did  the test for Parvovirus, it came back negative. So we never knew what virus Tommy had. After this virus, Tommy got another virus that make him sick for a week. The last virus he had was two weeks ago, but this time he didn't get so sick. Tommy was also exposed to the company of a dog two days before he showed asthma symptoms, he spray a daddy's cologne on him and we took him to a park when the pollen levels where too high, which all these things together may be the asthma trigers. The pulmonary doctor was taking notes of what I was saying and he decided that an allergy test and a x-ray were necessary.

Tommy is with a rash due to the weird

virus he got. It was very itchy!

Tommy did great while they were checking his oxigen levels that was 96%, which is good. After they checked him, they did the allergy test.  The allergy speciallist was thinking that the test could be positive for allergies. She did the allergy test in Tommy's back, which was a little uncomfortable for Tommy because they were very fine needles. We have to wait for about 20 minutes or so to see the reaction on his skin. When she came back and checked his back, she said: "HE IS NOT ALLERGIC TO ANYTHING." She and I were happy for the results. But I was wondering, What is causing my son's asthma? 


We went to do the chest x-ray while they got together in other room discussing the allergy test results. After the x-ray, we came back to the room and wait for a few minutes. The doctor came to the room an explain to me that according to the x-ray,Tommy still has patches of mucous on his lungs due to the RSV, but it is nothing we should be worry about it. Tommy's body will get it out by itself. He also mentioned that Tommy was still at the age of high risk for getting RSV  in January because he wasn't quite 3 years old; even although, he was a few months to turn 3. The reason Tommy has developed asthma is strictly related to the RSV, which has made Tommy sensitive to virus; therefore, every time he gets a virus he will get sicker than any other child, in other words, it seems Tommy is allergic to virus.  


Can Tommy's asthma be more sever due to he has Trisomy 21?
The doctor says: NO! It is very weird that kids with Trisomy 21 get asthma. Tommy's asthma is a viral asthma as result of the RSV, it is not related to the syndrome. Tommy's case is not different from typical kids that have been through a sever RSV.


How to help Tommy to get through the viral asthma?
Due to Tommy's lungs are now sensitive they get easily irritated; therefore, we should avoid odors from perfumes, deodorants, body wash, cleaning products, smoke, air freshener, oranges, flowers with strong fragrances, onions, smoke and among others. In other words, we should avoid any strong odors. He is not allergic to the strong odors, but they make his lungs get more irritated, which cause the lungs produce more mucous. We want to avoid as much as we can the mucous because the congestion can cause ear infections and this can cause a lot of trouble in Tommy's language development. Specially now, that he seems more interested to talk. The good news is as he gets older he will grow of the viral asthma. It won't be forever!


We also have to give a lot of water to Tommy because it helps to release all that mucous out of the lungs. So I am doing my best to make him to drink water at home because he doesn't like to drink water at home. 

Good hygiene habit are important to help Tommy, so keeping Tommy's hands clean is other way to keep him healthy. We do a lot of hand wash before meal time, playing outside, touching an animal, and so on. When we are out of the house, we use hand sanitizers in gel and wipes. We also keep a hand sanitizer in his room, so before hugging him in the morning we sanitize our hands. We get used to it since he was a baby. We will just keep encouraging Tommy to wash his hands so when he gets older we don't have to be worried about him washing his hands. 

I am looking for ways to boost his immune system because it has fight harder and more often with all virus are in the air due to the viral asthma. I will talk to our pediatrician to run a Vitamin Test Profile and/or Nutrient test. In this way, we will know if Tommy is having nutritional deficiencies, which is common in kids with T21 due to extra genetic material their bodies don't absorb all the vitamin and nutrients as it should be. If this way, we can get nutritional supplements that can support and make his immune sytem stronger than ever.

We are very happy that Tommy can enjoy 

outdoor activities because he likes to play outside
without being worried about the asthma trigers. 

Our art of blowing —Party Blowers

Since Tommy's was very little I encouraged him to drink with a straw and blow whistles and bubbles to strength his oral muscles. I still keep incorporating new blow toys to the art of blowing so he can practice using different complex blow toys that can be found at dollar stores, such as: whistles, party blowers, horns, pipes, bubble blowers, flutes and among others. 

A few months ago, I got party blowers and they were difficult for me to blow, so I put them away because I thought they would be too difficult for Tommy. Yesterday evening, Tommy took his blow toy box and open it. He found the party blowers! I gave him one party blower while I was blowing other one. Then, he blowed the party blower over and over again. I was surprised! Those are quite difficult to blow. I felt my oral muscles working while blowing the party blower. So watching Tommy blowing these party blowers was very impressive because of the fact he has Hypotonia (low muscle tone). He has to work his oral muscles twice harder of what I do. He enjoyed blowing the party blowers and I know for sure his oral muscle are stronger.

I know my letters

Wow! It was my expression when I discovered in the evening of April 15 my son was learning the alphabet capital letters from his teacher and not from me. In that week, his teacher was working on the alphabet letters with different activities. I thought it will be good to take out our foam alphabet letter to play in the bathtub and reinforce what his teacher was doing during the week. When we started to put the letter in alphabet order after the "letter A" I gave Tommy the "letter B" and he began to sing "beeh, beeh, beeh" with he tune of the alphabet song. I was surprised because I have never taught him the alphabet capital letters or their names –I have been doing the letter short sounds with animal lowercase letters from the Zoophonic program. I took the letters and I asked him: Which one is the letter A, the letter B, the letter C...? Until the letter G because he didn't want to continue. He chose the right letter every time I asked him. 

On April 26th, I discovered Tommy could recognized more capital letters of the alphabet during bath time, too. So I took the next 7 letters and he recognized all of them. He got a little confused with the H letter, but he named J, K and L after me. By that Time, my boy recognized 14 capital letters name that he learned in the classroom.


Early in the morning of May 8th, after I did Tommy's Asthma treatment around 5:45 am, I thought it was a good time to play with Sesame Street Alphabet Cards because we both were fresh and we couldn't sleep anymore. For my surprise, Tommy recognized the whole alphabet. Before I discovered he recognized the alphabet, I was thinking it will be confusing to teach him the alphabet letter names because I have been teaching the letter sounds first, but in lowercase. Everything worked out better than I could expect. We are extremely proud of our little man who keeps exceeding our expectations regardless his genetic disorder. He is learning wherever he goes, even his communication barrier don't allow us to know how much he knows.


The book that Tommy's teacher uses to teach the alphabet is Chicka Chicka Boom Boom. She told me this book has been a hit in her class. So I am reading this book to Tommy once an while to reinforce the alphabet letters and I point to the letters while I read. I am also singing the ABCs songs.

I am glad God gave me the skills of 'observation' because I always discover when Tommy is accomplishing a milestone or has learned something new regardless his communications barrier. I always knew the path to raise my child would be different, but not less rewarding. 

Enjoy the video of Tommy recognizing the alphabet letters

This video is dedicated to Miss M., Tommy's teacher, 

for her dedication and passion for teaching a world of knowledges to her students. 

Learning to live with Asthma

Tommy's first three years were amazing happy and healthy. We were very grateful for having a child with a genetic disorder that barley got sick. Suddenly, everything changed since December last year when he began to get sick too often. In January this year, he got RSV and our boy had to spend 13 days in the hospital. Before leaving the hospital, we were aware he may get asthma due to the severity of the RSV he got. We were hoping it wouldn't happen, but  life can change in a second! 


Tommy got his first asthma signs since last Monday April 25th at night, but I didn't realize it. He began to cough while sleeping. The asthma symptoms got worse through the week. But we were thinking it was just a cold. But on Sunday night, I noticed Tommy was breathing using his neck and tummy muscles. I knew immediately it could be asthma, so I went to our room for the asthma action plan and I gave him 1 nebulizer as it written in his action plan. It worked for a while! Through the nigh the symptoms were getting worse and he had high fever, so we took to the doctor in the morning. The doctor say: I think he is developing asthma. After she checked his ears, she said: He also has an ear infection. It seems he got the ear infection due to asthma. The guy was feeling miserable! So  she said that we had to do more testing, which is already scheduled for June.


The doctor asked about things that could pull the trigger, I mentioned Tommy's favorite friend, Seumus, a dog.  She just said mmmm! I mentioned to her that he is a hypoalergenic dog. She said every dog produces dander that is in their skin, urine and saliva; which is an asthma trigger. She said that it is better to keep Tommy away from the dog until the testing is done and then they will determinate if it is safe for him. I remembered other things that pull the trigger. My husband left a cologne in the leaving room and Curious Tommy reached it and spray it on him the week he was getting sick. The day before his first asthma sign, we took him to a park and the pollen was too high for allergic and asthmatic people. 


Tommy was  spinning around this evening, then he got ditzy and felt hitting his chin against the tiles, so he got scared and couldn't control the emotion. Then, he stopped breathing! I felt life stop in a second, I didn't know what to do. I picked him up and run to call 911, but when I reached the phone he began to breath so I gave him his asthma medicine and everything when back to normal, except that I still has that moment in my mind. IT WAS SCARY! Today, we were just accepting the idea of him getting asthma and beginning to learn about how to deal with it when Tommy has first asthma attack. 


I still don't know much about asthma. But I will learn as much as I can to help Tommy to live a healthy life with asthma and teach others around him what to do if he has other asthma attack and avoid triggers that cause asthma. There is a possibility the asthma goes away as he gets older, so I am praying for that. 

My little monkey

My little monkey is learning to pill a banana by himself. We usually pill the banana for him and cut it in little pieces he can eat with the fork, but I thought it is about time he can learn to pill the banana by himself. I cut the end and I pill the banana just at the beginning and I give it to him. He finishes pilling the banana, but I check he takes all the skin off because sometimes he leaves one side of the banana with the skin. This is an easy way to put the hand fine muscles to work and gain independence while having fun. I laugh a lot looking at my little monkey learning to pill a banana. Enjoy the photos of my little monkey eating banana.

Act Now to Save Funding for Postsecondary Education Programs for Students with different abilities

From the National Down Syndrome Society:

Act Now to Save Funding for Posseconday Education Programs for Students with Intellectual Disabilities

SUMMARY:

Congress is currently considering two budgets: one to fund programs for the rest of the current year (fiscal year 2011) and one to provide funding for the next fiscal year (2012).

The Higher Education Opportunities Act of 2008 included a new program to provide opportunities specifically for students with intellectual disabilities, called “Transition Programs for Students with Intellectual Disabilities into Higher Education, or TPSIDs.”

So far, this new program has not been cut in any of the funding bills under consideration.  However, so many programs are being cut or eliminated advocates are concerned that this new program will be targeted.

In addition, the President’s funding proposal for next year (FY 2012) would consolidate or mix the program into another program.  Advocates are concerned that if that happens we could lose the focus on serving individuals with intellectual disabilities.

TAKE ACTION:

Contact your Senators, in person or by phone/email with the following message:  

Please support funding to continue the Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) and the TPSID National Coordinating Center by the Office of Postsecondary Education in the U.S. Department of Education. These demonstration projects are developing models of effective ways to ensure that students with intellectual disabilities have access to postsecondary education and increased employment outcomes. These programs should be protected and supported in the FY 2011 and FY 2012 funding bills.

Click on TAKE ACTION NOW!. This link will take you to the website of the National Down Syndrome Sociaty (NDSS) where you can directly email to your Senator using the NDSS Mail System. You just have to fill out the electronic form. 

Your support is important for my son and my family. We believe every person with physical and cognitive challanges deserve be included as an active member of our society through a higher education as any other typical person. Your support will contribute on building a better future for our son, Tommy. Thanks for your support!

Looking for an University for my baby boy

Should I think about a higher education for my child who has Trisomy 21?
I have always known the answer, YES! We have never lost the illusion of a bright future for our son, not even when we got the positive results for Trisomy 21 when Tommy was an unborn baby. 

Email announcing we were expecting a baby boy with Trisomy 21.

Wed, 28 Nov 2007 00:37:52

Hi everyone,

Adam and I have a great news to announce (Some of you may already know what it is). We are expecting a baby boy! We are very excited because we truly want to have a son and God has blessed us with one. A surprise came with this great news that we weren't expecting, but we have accepted because we love our son no matter what. Our baby boy has been diagnosed with Down syndrome. It was a little bit shocking in the beginning, but we are happy and enjoying our pregnancy because we love our baby without limits.

85% of unborn babies are aborted for having Down syndrome in the USA every year. These babies are just killed because they are not what their parents were expecting. Some how, we are glad that we are the ones in this situation because we have the courage to fight for our unborn baby.

Down syndrome is not too bad as many people think. They are able to do pretty much everything that typical people do. But it depends of how much stimulation, care, and love they receive from their parents. We will protect and educate our baby as a typical kid with the same opportunities. We are keeping the illusion of our first baby and weare not going to give up until he will attend to a regular school, speak two languages, graduate from college and get married...

We always have given and will give the opportunity to our son of trying before we assume he cannot do something due to his genetic disorder. Make accomadations along the way is a way we can help him to reach his full potential. This is the reason since Tommy turned 2 years old, I began my search for programs, colleges and universities that support young people with different and exceptional abilities to continue a higher education. I have found two great programs, Project Succes and Think College. Those programs help young adults who wants to persue a higher education regarless their cognitive or physical challenges. 

• Project SUCCESS is a Model Demonstration Project to ensure quality higher education for students with disabilities sponsored by the U.S. Department of Education (USDE). The Colleges and Universities receive grants from the USDE to provide the accommodations students with disabilities need to continue with a post-secundary  education. There are three Universities, I am aware of, that offer Project SUCCESS, those are: Missouri State University, Buffalo State College and University of Wisconsin. The services offered can differ greatly across post-secondary institutions. 
• "Think College is an initiative of the Institute for Community Inclusion (ICI) at the University of Massachusetts Boston. ICI has been a leader in the area of postsecondary education for people with intellectual and other developmental disabilities for over ten years. As interest in postsecondary education for people with intellectual or developmental disabilities has expanded, so has the need for research and training in this area. ICI currently has three federal grants designed to conduct research, training, and technical assistance for professionals, families, and students related to post-secondary education for individuals with intellectual and other developmental disabilities." Think College has designed a website to share updated information about post-secondary education, resources and tools for students, families, and professionals.  This website show strategies, training events, and networking with data base of all colleges and universities participating in this program where transition aged students as well as adults attending or planning for college can search for the college or university better serve their needs.  

Thinking about college for a person with cognitive or physical challenges is not out of reality. It can be possible! Over the last years, the number of students with different abilites seeking to continue a higher education has increased.  By the time Tommy will finished senior high-school, my husband and I will be ready with all the information to guide and help our son to make a decision about his future in continuing a post-secondary education that will lead him to an independent life to the maximum extend possible. When the moment arrives, maybe there would be more and better programs for our son to succeed during his colleges years until his graduation. My husband and I know now we will have to star a saving education plan that economically support our son's college tuition. I have browsed for possible universities and colleges that Tommy may like to attend, this warm my heart and brought a big smile to my face because I knew 3 years ago it was possible for my son to go to college, but I didn't know when or how to start, but now I have the information I need and many years to get ready. 

"THE SKY IS THE LIMIT."

Our art of blowing —Lip Whistles

Our former Speech Therapist brought a lip whistle in one her visits in February to work on oral motor with Tommy. I searched online for the lip whistle just in case the one she left gets broken. For my surprise, I found the lip whistles in a website that sells therapeutic tools for oral motor therapies at $11.95 (12-pack). Howsoever, the lip whistles are also sold at $5.99 (48 pieces) in  orientaltrading.com (a party supply store). Before buying any blowing toy as a therapeutc tool for Tommy's blowing kit, I check prices and availability in local party store supplies or online because many of the whistles, horns and flutes used as oral motor therapeutic tools are also sold in party supply stores at a cheaper price.

The lip whistle is great to work on strengthening the lip muscles to achieve a good lip closure. This whistle is more difficult to blow than the other whistles we have in Tommy's blowing kit.  Tommy couldn't blow it the first time, but after three of our session he was able to blow it. He cannot hold the whistle with his lips and blow at the same time. When he is able to hold it with his lips and blow it, then, he will master this whistle. Meanwhile, he holds the whistle with his hand or I hold it for him. This whistle is fun as party favor or a therapeutic tool. So it has become one of our favorite blowing toys in our art of blowing.