Posts

Showing posts from 2012

Good bye 2012

Image
Good bye 2012! It has been quite a year for us. Alyssa has been going to school full time at Debbie School. Best decision ever! Therapies are doing well, she has shown great progress: started walking at 19months, but fully in dependant at 24 months, goes up the stairs and comes down with help, our major setback has been speech, she says mama, Dada, "atupe" ( we think she means Christopher. . lol), otherwise she call him "DA" . waves bye, says hi to everyone, very attention grabber and popular unlike you could tell she is Freddy's daughter as my husband is very extrovert and friendly. She signs : mom, dad, food, eat, milk, dog, more, jump. We have been in the hospital three times: RSV, Croup and the last one in the PICU for over 5 days for Pneumonia. We went to our first buddy walk! Total success thanks to my coworkers we were able to raise over 200.00, so thank you everyone for your cooperation and support. We went to our first X

Alyssa's First Buddy Walk

Image
Hello everyone, It has been a while that I blog anything (shame on me!), but I have been so busy, went back to school, work full time, kids are both at school, wife, blah, blah, blah. I will post a separate blog about Alyssa's up to date later, but today I will be talking about our first buddy walk. First let me tell you how I started. I have been wanted for the last two years to attend, but either Alyssa was still at little peanut the first year (2010) when the buddy walk took place, or she was sick (2011) and we could not make it. This year, I decided not to miss it. I asked my boss at work if I could do a bake sell at work to raise some $ in honor for our team. She said "Yes", so Alyssa's Blessing Team had a head start. I do not know many people nor I do lots of money, so I had to bake at least twice a week in October to raise some money for  Broward Gold Coast Down Syndrome Organization .This organization allows our kids to have activities and help with scho

3/21/2012 Celebrating Down Syndrome World Day

Image
It is official! Our big family has gone global. Down Syndrome is going to be celebrated around the world. There are activities in different website and bloggers around the world, and we are all united to raise "AWARENESS"  around the world. Parents of kids with Down syndrome celebrate it everyday; but 3/21 is to say to the world is that we are here and we advocate for our loved ones! We love their differences and appreciate that extra chromosome that makes them unique. March 21 represents  the uniqueness of Down syndrome in the triplication of the 21st (trisomy) chromosome. As a parent of a baby with special needs, I only want for her respect and the opportunity that others deserved. That's why we want to spread the world, to tell others and to teach them that kids and adults with special needs are persons with feelings as well. Alyssa is a baby now, but she will grow up and I would like her to be included in activities like her peers. I want her to get a job and be r

Sad, mad and other mixed feelings

I know this is a blog about my child, but I really need to vent my feelings somewhere. I have been heart broken since I last read on Thursday about Amelia, a girl with special needs that is being denied a lung transplant due to her condition, you can read her mother's painful story here . As a mother of a child with special needs, I am angry just to think that mother could be me someday; as Nurse who cares for chronic patients, I am jealous that some patients who are still in self destructive mode can be treated; yet a little girl is being denied her right to live. I always try to be an advocate for my daughter and many of the wonderful mothers that I met through BabyCenter and the Down Syndrome Community push me to be better everyday; but sometimes I try to have my own family involved on the process and it just make me feel so alone that my own husband does not want to hear about it; I am a wife who is feeling all these awful negative feelings and can not express them to her own

Good times, yet still scared

Image
On Monday, I got home at 530pm from a BBQ get together with friends that I am blessed to work with. For some of them, it was the first time they meet Alyssa. I have taken her to work once when she was 3 months old, she was still hooked to the apnea monitor and we went close to my job for our early intervention appointment. Well they loved her!!Alyssa was a bit shy at the beginning, but she loves kids and she felt right at home with them. It took a little to warm her up to the adult crowd, but after half an hour she was all smiles and flirting around. It makes me so happy find out she is just charming with others than our family members. She was playing with the kids in the trampoline and loved being held by my friends until she felt sleep on my buddy's arms. I loved to see the acceptance within my friends. It reassures me that she has her own personality and she will be accepted by others than her peers. It stills scares me to think about her future. Last week I read about a blog