Deedee's Eye Gaze System Donated to SMA Family

We think that Deedee must be happy about this...

An SMA teen received Deedee's eye-gaze system as a donation from us. Deedee's speech therapist helped us find the right family, and it is certainly very fitting that another SMA fighter get it to have another tool for improved quality of life... and for communication. We know that Deedee must be smiling from Heaven...

Deirdre Granted a Star at GKTW

Deirdre Valeria became a star of her own in October 22, 2012. Nevertheless, it weighted heavy in our hearts that she did not get to complete her Make a Wish trip which was scheduled for December. The plan was to take a train from Newark, NJ and travel down to sunny Florida where our Diva would meet Pocahontas and Mulan in person! We were asked if we wanted to do this trip in September, but we went with the idea of December as we wanted her to see Disney in Christmas... We would have stayed in Give Kids the World for a week, and she would have visited her favorite princesses. Sadly, this did not happen...

During the past two weeks we had the privilege of meeting two other families who were close to us through our journey. These families have two SMA princesses: Sophia Gaynor and Stella Turnbull. Both girls celebrated their birthdays visiting the Magic Kingdom.

Sophia made her dreams come true through Make a Wish and was staying at GKTW.

 

Stella had her Make a Wish trip three years ago, and ever since she travels once a year to celebrate her birth. Stella visited GKTW to have some family fun.

During our second visit, we asked the GKTW crew if it was possible for Deedee to have a star since she almost made it there as a wish granted by MaW. After some consideration, and to honor hr memory, they handed us a sparkling star... This sweet gesture deeply moved us. We wrote a small message for Dee in its core, and handed the star to the Star Fairy so she would take it up to the sky and place it in its rightful constellation. Soon we will receive an invitation to go see the star, that should be placed in the Castle of Miracles tower...

Thank you, Give Kids the World. Right now we are completely uprooted and have no physical place to visit Dee as her resting place is in Puerto Rico. Knowing a star with her name is in such a meaningful place inspires us. We are really grateful for this gift of love.

Deirdre Valeria Medina Rivera. Forever loved, forever missed. May the whole world know: She was here on Earth, a living miracle. Now she walks with us as our guardian angel, and as our North Star.

As A New Year Begins

Reminiscing on Deirdre's life, acknowledging that our lives were changed forever for the better. Deirdre brought the best in all of us, and she will keep on making things happen. We know it.

From the beginning me and my husband understood that there was no space for pity or for helplessness. Deirdre needed tools and actions, and so we tried our best to comply. We love her for all she is, for all her accomplishments, for all her dreams. She did not let anything stop her. She dreamed big. She worked hard, so she could have the "privilege" of partying hard. She saw and experienced the world. We are always very proud of everything she did and everything she is doing right now... because we know that as an angel she keeps on being very busy.

Thinking about all that Deirdre inspired, I wrote this in my personal professional blog... Nothing but the truth.

2012

"This year marks big changes in my life. The focus was basically a big lesson on how life should be lived to the fullest, and about the simple fact that if you want to do something just do it. Some people may see that for the past 5 years I vanished from the workforce, but the reality is plain opposite. For 5 years I ran the most important entity that I will ever know, Deirdre Medina. I was in charge of all administrative duties and well as services and public relations. Deirdre demanded a caregiver and an advocate that had an iron fist for “business matters”, as well as a compassionate spirit. This has been the most challenging job that I have mastered… a job with many hats, unpaid in monetary terms, with high stress 24/7, and where all decisions were life or death matters (literally).

As administrator I had to run a sound finances and accounting department so all of Deirdre’s needs were met. Therapists, therapies, equipment, medicines, doctors, and nurses where part of the daily activities and daily expenses. Deirdre needed specific care, and supervision of her physical and mental health was a daunting task. I had to become Deirdre’s R&D team so I could find answers to her daily dilemmas… answers that normal service providers would not give. And so her challenges inspired answers that helped other families with kids in her situation. I researched every single day for 5 years. I looked for answers as professionals gave us the cold shoulder… and got them. Creating and maintaining Deirdre’s website we raised awareness about her illness, guided new families, gathered funds for her needs, and promoted all the important events of her life.

Thanks to Deirdre Medina  I have been web designer, graphic designer, marketing team, research and development, assistive technology professional, event coordinator, accounting/finance department, human resources department, physical therapist, alternative medicine practitioner, occupational therapist, special needs advocate, special education advocate, special needs media specialist. And underneath all this, I was also honored to be her mother.

It has been the most demanding, hard job that I have ever done. I never even imagined I would learn so much, and put into practice so many things I learned from co-workers and friends. I never imagined that my knowledge in Information Systems would be the main tool that would facilitate my daughter’s learning and daily life. Thanks to technology she was able to have a voice via an eye-gaze system. Thanks to technology she could play with a toy even if she could only barely move a finger… activating it via movement detection sensor. Thanks to technology she enjoyed books, and she aspired to become an animation artist. Helping her I learned so many possibilities for special needs kids! She gave me the biggest gift in my life, she showed me how to love technology because of what it can do within a positive environment.

2012 was the end of my world, I lost Deirdre. But I see her alive in my finding out how to reach others and teach them all I have learned… Running the Deirdre Medina empire assured me that I can do anything when I put my mind to it, and that without sacrifice there is truly no glory. Sacrifice, hardships… challenges that develop your character… experiences that make you grow. Things are different in every way. 

I hope that 2013 is the year where the command of “just do it” comes true. I’ll keep dreaming my diva’s dreams (Deirdre was known as Deedee the diva), and I’ll use all within my power to make them all happen. True happiness comes when you help others with your heart in your open hands. I look forward to becoming a media specialist and keep on gaining knowledge in AT and special ed. I also look forward to creating Deirdre Medina’s Foundation… for helping SMA kids who are abandoned in hospitals, and to raise awareness about SMA… But that is another story…

Right now 2012′s last days are bittersweet, as it is the time to enjoy my homeland as I am getting ready for a new journey. Florida, here we come! May Deirdre guide my path, and smile from Heaven… as I look for my destiny."

From Vivian Rivera: Artiste & Techie, "2012"

IN LOVING MEMORY

IN LOVING MEMORY OF OUR BELOVED DAUGHTER

Deirdre Valeria Medina-Rivera
"Deedee The Diva"
Aug 17, 2007- Oct 22, 2012
Forever 5 years old

"The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: He leadeth me beside the still waters. He restoreth my soul: He leadeth me in the paths of righteousness for his name's sake.

Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou prepare a table before me in the presence of mine enemies: Thou anoint my head with oil; my cup runneth over.

Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever."
-Psalm 23


Deirdre Valeria Medina-Rivera was buried on Sunday, October 28th, 2012 at Vivaldi Cemetery in Mayaguez, Puerto Rico. Deirdre had two funerals, one in New Jersey (where her life actually took place, touching the lives of many people) and one in her homeland (so family could meet her and see her for a last time).

Our family wishes to thank all the people that one way or another were touched by our diva. The love and support we got from you all through this hard time has been overwhelming and humbling. Thank you.

4:55 AM

It is with a heavy heart that I have to announce that Deedee The Diva was called to Heaven today at 4:55am. She was not sick, she had no plugs, she had no lung collapse. Her heart gave up, and then internal bleeding followed. This came out of the blue, for no reason. We will update with funeral plans soon. Right now... we are assimilation, re-grouping... and trying to make sense of all this.

Synagis Shot Approved!

After getting an initial denial, insurance approved the doctor's appeal for Synagis shots for Deirdre. One less fight in the neverending battle for what Deirdre needs. Thanks to Mrs. Llibre, Dr.V and Dr. M for their effort.

RSV season is here, and the Synagis is a shot that protects against RSV. Parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.

The Respiratory Syncytial Virus causes a cold in older children, but it can cause serious life threatening infection in younger high risk children, and children with neuromuscular illness and respiratory distress. These children can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections and pneumonia.

SMA kids should get the RSV shot, especially if they go out of their house during fall/winter season. It is not an absolute remedy, but a precaution. As always, use sound judgement and take other profilactic precautions. 

"Children usually develop symptoms about 2-8 days after being exposed to someone with an RSV infection (the incubation period). These symptoms initially include just a clear runny nose, but as the virus spreads, symptoms may worsen, and may include coughing, vomiting, fever (which can range from low grade to very high), rapid breathing with retractions and nasal flaring, wheezing, and poor feeding. In severe cases, children may have apnea and respiratory failure.

Like most viral infections, treatment of RSV infections are usually symptomatic. In children with wheezing and difficulty breathing, nebulized treatments with albuterol may be helpful. In general, though, breathing treatments only help about 25% of children with bronchiolitis, so if your child doesn't have a good response to a breathing treatment, your doctor will likely not continue them.

Other treatments may include supplemental oxygen and intravenous fluids if your child is not able to eat and drink well. Treatment of bronchiolitis with steroids is controversial, and is generally not thought to be helpful. Since it is a virus, treatment with antibiotics is also not usually helpful, unless your child develops a secondary bacterial infection.

Although most children with RSV infections can be safely treated at home, those with a chronic medical condition, need to be hospitalized and closely monitored. Occasionally, children with severe difficulty breathing and/or apnea need to be placed on ventilator to help them breath. RSV can also be fatal in some hildren."

-from About.com pediatrics

Bantam Stander Arrived!

After a quest of more than 5 months, the new stander for Deirdre arrived! We had sent it out to insurance in April, but the paperwork got lost at both ends (insurance & DME). Nevertheless, persistence finally paid off... Deirdre has a BANTAM stander that hopefully will help her achieve many physical goals.

Right now the main concern is that her knees began contracting thanks to going for so long without a stander. It is very dissapointing when details like this goes unnoticed by the service providers... their negligence and lack of interest has this consequences. Now we have to work with Deirdre to see if it is possible to go back to where she was... no contractions whatsoever, and the ability to stand in her stander for up to 6 hours without problems.

Right now we go back to begin with endurance, tolerance, use of knee brace AFO (Ankle foot orthosis), and use of her TLSO (Thoracolumbosacral orthosis: This is one of two main types of braces used to correct the lateral (sideways) curve of the spine in scoliosis. Right now Deirdre has no curvature in her spine, and we want to keep it that way. The main problem is that her TLSO is hard and very tight... We need to seek further advice about this as it is obvious that it hinders her breathing.

We have researched myofascial release therapy, a specialty PT that may help with the knee contractures, but as usual insurance becomes a big problem... We still have to see if we can find a PT for this specific purpose and validate its use for Deirdre.