Deirdre was born in San German, Puerto Rico, in August 17, 2007. Our diva was a beautiful, healthy baby that was all grown, with a beautiful mane of hair! She proved to be a very serious baby that only showed a hint of a smile when food was in the horizon... or her Godfather. Everyone was surprised by her big blue-green eyes, and her very serene demeanor. She made a raspy noise that called Mommy's attention, but the pediatrician said that it was something normal... The concern grew along with her lack of strength when holding toys and still we were assured that she was fine, just a “ late bloomer”. Deirdre's name means " Lady of sorrows" , and it is from a Celtic legend. Her second name is Valeria, meaning " with valor and courage". Her name describes exactly who she is... She faces the sorrow of having SMA, but she is quite a warrioress who holds valor and courage in everything she do and accomplishes.
She was baptized, and enjoyed her first Halloween and first Thanksgiving. But when December 17, 2007 arrived, just when she turned 4 months old, Deirdre had a respiratory arrest that landed her in the hospital with a collapsed lung and both lungs filled with fluids. That day I had run errands with her, and she was alone with me in our house in the countryside of Hormigueros, PR... I had placed her in bed, and something told me to check on her. As I held her up her eyes rolled up and she became completely limp. I brought her back with four big breathes, placed her in the car-seat and drove to the nearest clinic... It was a 30 minute drive that seemed eternal to me... Upon arrival the ER crew thought the baby had choked on milk and that I was overreacting. When they saw she was blue, then they moved... And transferred us to the pediatric hospital in our hometown, Mayaguez...Doctors said she would not live, and they did not know what else to do with her... She had draining tubes on her chest, and oxygen... but she showed little improvement. Our whole world stopped... and hope was very thin... Christmas Day arrived, and all we asked for was simply for our baby to live. We were very grateful to God for granting such a wish... Miracles happen everyday, at every moment... People should become more aware of that simple fact.
In January 2008 results came back from the lab and confirmed that Deirdre has Spinal Muscular Atrophy Type 1, Werdning-Hoffman... We were devastated... That night we sat down to internalize everything, what the diagnosis meant, how helpless we felt... I wrote everything that had transpired in Deirdre's blog, a journal that I keep for her since before she was born. For the next days we battled doctors and were asked for decisions we could not make... And then we realized that there were messages in the blog from families from all over the globe... families dealing with SMA. These people gave us answers. We realized it was time to stop the distress and start the action... Crying for our baby would not help her. We understood whatever we were to do had to be done fast.
Deirdre was transferred to the pediatric hospital in San Juan, PR... There, the quest for ctor's help began. In the end we had to go to a place where they understood what to do with SMA patients... We were granted a Catastrophic Funds flight, an air ambulance that would take our baby to Newark, NJ to the University Hospital were Dr.Bach and a specific PICU staff that face SMA everyday would try helping Deirdre... We had been denied 4 times that flight, but we didn't give up... We left our normal life back in the island... friends, work, family, house, car... everything... But leaving everything was the trade-off for giving Deirdre a chance at life. Deirdre was 8 months old when she finally reached New Jersey. And turns out that on the third day of her arrival she was successfully extubated to bipap. She stayed a week in the hospital as they made sure she was fine, and that we were well trained to keep up with her care at home... And our new home became Newark, as we could not go back to Puerto Rico. The island has the technology and the medical prowess to support SMA patients, but the system makes everything hard especially for blue collar workers... Maintaining a PICU environment or equipment at home is very difficult over there, government help is almost absent. And then the doctors egos come into play... Only one pulmonologist in the whole island actually see ventilator patients... a big shame!
The first two years were really difficult. We had no transportation, and Deirdre was in the hospital often. But after she turned 3 years old she started to be more stable. We also cut the parade of nurses that was going on, and kept only two nurses (thus controlling the exposure to outside germs and people who did not know how to handle her). Deirdre started Pre-K at home. Her teacher is amazing and has stayed giving her home instruction for two years now. Deedee just finished her second Pre-K year, and will start Kindergarten next month. During Summer, she gets home instruction in the mornings and she has attended for two years in a row to the Camp Jr at the Newark Museum where she has made many friends and has learned much about different cultures and arts and crafts.
Deedee gets different therapies through the day: physical therapy, occupational therapy, speech therapy... and assistive technology assessments. She uses eye-gaze technology to speak with her communication computer, and uses various switches to activate favorite toys and games. She is currently under evaluation for hippotherapy and aquatic therapy. She loves traveling and has demonstrated interest in animation art... especially the art depicted in Wonder Pets. Apparently she has the artsy streak that her mom has. She is also very fond of nature documentaries, and Disney movies (especially those with strong willed girls like Mulan and Pocahontas). Deirdre is very bright and has quite a strong personality herself!
Deirdre will turn 5 years old next week. Her journey has been amazing, and it gives proof that there are no expiration dates and that where there is a will there is a way. SMA kids can do anything, they just need the tools to do so. We are here to provide those tools, and enjoy the ride. Deedee has made our lives better in so many levels! She touches many lives, and she inspires many to live live to the fullest... and just do things. Dream big, and make dreams happen! SMA cannot stop that.
Deirdre's website is www.DeirdreMedina.com. It is in English and in Spanish, we wanted to share all the information with other families that did not speak English as well as we wanted to raise awareness and share Deirdre's journey. The site is all about Deirdre: Equipment, doctors, pictures, videos... and information about SMA. It links to Deirde's blog, the little journal that saved her life and which we had named "A little mage in the family: Chronicles of a Spellbound Baby" . Wow, our little Deirdre turned out to be quite the sorceress after all! Her magic spreads to everyone who dares to get to know her. Give us a visit, it's just around the riverbend!
"Embrace The Suck"
To donate and help find a cure for Deirdre and all of her friends please go to www.sophiascure.org/donate. Help us end SMA today.
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