Martha One of my calls was to a dear friend and former supervisor Martha who suggested I look for a neurologist in Central Florida and ask for recommendations for places close to home. And so I did. I learned some facilities would not take David because the time allotted for acute rehab had elapsed or he had used all the time authorized by the insurance. Other places could not accept David because according to policy - he was too old. 27 years was old? Health insurances and assistance providers separate the benefits into 2 primary groups: the group up to 18 years of age and the group over 18 years of age. For the system - David was considered old to receive certain rehabilitation benefits. This was mind-boggling.
Now the journey became challenging. Finding a place for David that could offer him the medical benefits he needed was not an easy task.
The Director of one of the rehabilitation centers in Avalon Park called to schedule a visit. I looked forward to it and we all hoped this would be the facility God would guide us to. The place looked beautiful on the website. The rooms were well furnished; it had a pool and many different activities as part of their rehab program. It was only about 30 minutes away from home in Casselberry.
In the meantime, David was becoming more alert and would sleep less during the day. There was something different about him which I couldn’t pin point but there was an unveiling happening and I could feel it.
His therapist Stacy would continue to introduce a variety of food that included meatloaf, rice and macaroni. David’s endurance at different exercises during physical therapy continued to grow. He would initiate the routines, follow commands, worked hard at standing up and tried to eat on his own.
The Director of one of the rehabilitation centers in Avalon Park called to schedule a visit. I looked forward to it and we all hoped this would be the facility God would guide us to. The place looked beautiful on the website. The rooms were well furnished; it had a pool and many different activities as part of their rehab program. It was only about 30 minutes away from home in Casselberry.
In the meantime, David was becoming more alert and would sleep less during the day. There was something different about him which I couldn’t pin point but there was an unveiling happening and I could feel it.
His therapist Stacy would continue to introduce a variety of food that included meatloaf, rice and macaroni. David’s endurance at different exercises during physical therapy continued to grow. He would initiate the routines, follow commands, worked hard at standing up and tried to eat on his own.
He would have to learn how to manage everything with his left side. David’s right side had been seriously affected to the point where there was barely any movement of his right leg; his arm was bent from his elbow up, his wrist curled in and fingers firmly closed to his palm. His arm would place so much pressure against his chest, we had to constantly monitor for pressure sores.
We continued to be held by prayers from so many and blessed by the act of faith by others. A dear friend of my mother, Aguie , had sent David a picture framed of St. Raphael the Archangel, who in the Christian tradition performs all manners of healing. A relic of St. Padre Pio in Italy had touched the picture frame. Another friend of hers, Vito sent David 2 medallions from his visit to the Saint Ann’s shrine in Canada. He shared the miracle of a relative who in the past had walked after visiting the shrine. While in Rome, Gaby mounted the Holy Staircase or “Scala Santa” on her knees, praying for David. The holy 28 marble stairs are reputed to be those walked up by Christ on his way to trial before Pontius Pilate. The staircase was brought to Rome in c.326 AD by St. Helena, mother of the Emperor Constantine, who was a pioneering collector of relics.
 St. Raphael the Archangel  Jesus on the stairs with Pontius Pilate |  St. Ann's Shrine in Quebec, Canada  Holy Staircase brought to Rome in c. 326 AD by St. Helena, mother of the Emperor Constantine. |
Special visits continued to bless our days, Zi came to cut David’s hair again and had a fun time listening to his stories. A long time friend from high school, Jonathan and his wife Luisa also spent some special time with David. The “Sandwich King” cafeteria owners Gustavo and Lily also visited and told David how his sandwich had become such a premium item and most popular in their menu. Sebastian and Raydel from Segafredo surprised David one evening and smiled at Raydel when he asked if he recognized him.
Jonathan and his wife Luisa came to visit David.
 Gustavo & Lily |  David recognized Raydel. |
The regular lunches with Eddy and pedicure, shaving and manicure sessions with Ana were so therapeutic as well as the every 3 weeks visit from Gaby who would point out the progress and work with puzzles and games with David to encourage his cognizant improvement.
It was evident that all these visits had a great effect on David and were part of the healing process.
My sister and brother in law, Noemy and Hector were traveling back to Miami and were preparing the traditional Thanksgiving lunch for family and friends. It was hard to accept we would be celebrating the holidays away from home. Ana Carolina was adamant about David having the traditional meal even if it had to be finely chopped. She decided to bake her first turkey, a sweet potato casserole and green beans just for him to have.
It was evident that all these visits had a great effect on David and were part of the healing process.
My sister and brother in law, Noemy and Hector were traveling back to Miami and were preparing the traditional Thanksgiving lunch for family and friends. It was hard to accept we would be celebrating the holidays away from home. Ana Carolina was adamant about David having the traditional meal even if it had to be finely chopped. She decided to bake her first turkey, a sweet potato casserole and green beans just for him to have.
The neurologist at Jackson Memorial recommended a Baclofen pump to treat David’s stiff muscles and spasticity. The surgeon would place a pump system – a round metal disc, under the skin of the belly near the waistline attached to a catheter (a small, flexible tube) to deliver baclofen directly into the spinal fluid. A tiny motor moves the medication from the pump through the catheter. The doctor would refill and adjust the medication every 1 to 3 months and at the end of the battery’s life span (usually 5 to 7 years), the doctor would remove and replace the pump system
The other option was Botox injections, which had been discovered to help patients with spasticity. Botox is a nerve impulse ‘‘blocker.’’ It is injected directly into the affected muscles. The fluid attaches to nerve endings and prevents the release of chemical transmitters, which carry the ‘‘message’’ from the brain that tells a muscle to contract.
 | The neurologist persisted on the pump because the insurance would not approve the amount of Botox needed for an effective treatment plan. Both options were not 100% guaranteed. After researching and getting feedback from professionals and patients, as a family, we chose the Botox treatment. David would be scheduled to begin in mid December with the first injections. |
After much anticipation, the Avalon Park center representative never showed up for the scheduled appointment. My heart sank. I was so disappointed. Preparing for his visit had involved the staff and the family. The therapists coached David so he would demonstrate his ability to respond to commands. This opportunity promised a step closer to home. We waited for hours hoping he was just late. He didn’t even call.
It took all my energy to stay focused on my mission. The thought that “loving others was a form of penance” personally resonated deep within me. Instead of allowing my frustration to turn into resentment, I prayed to rely on the constant whisper of trusting in the Lord and pray for every person I would come in contact with - including those who would fail on their promises. It was not easy… especially because it wasn’t about me. I had to surrender to love regardless of my disappointment. It was not easy… because our pride always gets in the way. The need of being right or first or taken seriously or being respected - is in our nature. It was not easy… to avoid the temptation of being able to justify the injustice or wrongdoing against us. It was not easy… to keep away from hardening my heart through the experience of resentment and bitterness.
It took all my energy to stay focused on my mission. The thought that “loving others was a form of penance” personally resonated deep within me. Instead of allowing my frustration to turn into resentment, I prayed to rely on the constant whisper of trusting in the Lord and pray for every person I would come in contact with - including those who would fail on their promises. It was not easy… especially because it wasn’t about me. I had to surrender to love regardless of my disappointment. It was not easy… because our pride always gets in the way. The need of being right or first or taken seriously or being respected - is in our nature. It was not easy… to avoid the temptation of being able to justify the injustice or wrongdoing against us. It was not easy… to keep away from hardening my heart through the experience of resentment and bitterness.
I kept reciting the Lord’s words which had been given for David to read from Jeremiah: 29: 11-12 – “For I know well the plans I have in mind for you… plans for your welfare and not for woe, so as to give you a future of hope…
This was a journey of love, of trust, of patience, faith and endurance. I was not going to fight against what I had no control over and instead I offered up my disappointment with love. Tomorrow would bring something new.
(Jeremiah: 29: 11-12; 1 Corinthians 13:4-8)
(Jeremiah: 29: 11-12; 1 Corinthians 13:4-8)
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