Rocco is currently continuing his road to recovery at home surrounded by the love of his family. Any contributions toward his nursing care and therapy are truly and deeply appreciated.
August 21, 2021
Good Morning Everyone,
I just wanted to give you all a quick update on Rocco's surgery. Unfortunately due to a schedule conflict with his pain management doctor, the surgery needed to be pushed to September 23rd. Also, we were made aware that a new innovative Baclofen pump just received FDA approval. It would provide a broad spinal cord coverage more rapidly and enable programming modes of intermittent flow of the Baclofen depending on his need at that time. It also features a 10+ year battery life which can significantly reduce the number of future surgical procedures required to replace expiring pumps. This new pump is reserved for the most severe cases of spasticity, and his pain management doctor really feels that Rocco is a candidate for this new pump. During the time leading up to September 23rd, Rocco's pain management doctor and surgeon will be coordinating to make sure they are one the same page for the new pump.
While we are disappointed that this surgery had to be postponed another month, we want it done right and we want his pain management doctor to be there since he has followed my dad's case for over 5 years.
Thank you all for your continued love, support and prayers.
August 6, 2021
Good Morning Everyone,
Thank you all for your prayers, support and positive energy. Everything went well with my dad’s trial back in July. The trial was a success. Although it took a bit of time to kick in, ultimately his spasticity decreased and his range of motion improved in 3 out of 4 limbs. His doctors believe that he is a good candidate for the bacolfen pump. Rocco is currently undergoing the required pre-op testing and his surgery is scheduled for August 19th. We are so relieved that he passed this crucial step and we humbly ask you to continue to keep Rocco in your thoughts and prayers as he prepares for surgery. This will be his first surgery post stroke, so of course we are all a little nervous. However, we really believe this will greatly improve Rocco's quality of life so it is something we need to try.
Thank you again for all of your love, support and prayers.
July 13, 2021
Good Morning Everyone,
I hope you are all well and enjoying your summer! I just wanted to send out a quick update because my dad is going to undergo a pretty significant procedure tomorrow, July 14th. He will go through a trial to see if he would be a good candidate to receive a baclofen pump.
Baclofen is used to treat pain and certain types of spasticity (muscle stiffness and tightness) from multiple sclerosis, spinal cord injuries, or other spinal cord diseases and neurological disorders. Baclofen is in a class of medications called skeletal muscle relaxants. Baclofen acts on the spinal cord nerves and decreases the number and severity of muscle spasms. It also relieves pain and improves muscle movement. Baclofen can be taken orally, which is what Rocco currently does. He takes a high dose multiple times a day because the body develops a tolerance to the medication over time. Right now, that high dose does not seem to be helping him anymore, which is why the baclofen pump would be a great solution. The baclofen pump is an intrathecal delivery system, which provides the baclofen right to the target site in the spinal cord. It is an extremely effective way to deliver the medicine. A smaller dose, approximately 1/20 of what Rocco is currently taking, delivered right to the spinal fluid will give more relief than the oral medication and significantly reduces the amount of medication his liver needs to process. It is also a smart system that distributes the baclofen to the spinal fluid when needed. We are very hopeful that this will improve his quality of life and give him much needed pain relief.
The first step in seeing if Rocco is a candidate for the pump is to undergo a trial at that hospital where a very small amount of baclofen will be injected into the spinal fluid. Following the spinal tap he will be observed for 8-12 hours to see if his spasticity decreases. This is supposed to be an outpatient procedure, but there is a chance that he could need to stay overnight for observation. We really hope that doesn't happen because Rocco typically has bad experiences staying overnight in the hospital.
Our family really believes in the power of prayer and positive thinking. It would mean the world to us if you could please say an extra prayer for my dad and send your positive thoughts and energy that everything will go smoothly tomorrow. We hope and pray that he has no complications during the trial, his spasticity decreases, and he is approved for the pump.
Thank you for all of your love and support.
I hope you and your families are well and safe during these unusual times. It has been a very long time since my last update, but I wanted to let you all know how Rocco’s journey has been going over the course of this very crazy year. 2020 proved to be a very challenging year for everyone, and our family was no exception. However, this year has revealed some very hopeful avenues for us to explore with Rocco which has led to some great progress.
In one of my last updates I talked about how my mother (along with the assistance of the previous live in caregiver) had been taking my father 3 times a week to Easton, PA to receive Photobiomodulation (PBM) which utilizes a laser light to stimulate and replace dead cells with more efficiently functioning cells. While we found this treatment to be very hopeful and interesting, the 2 hour and 20-minute round trip drive to Easton 3 days a week was a lot on my parents. At this time, Rocco was also battling with extreme car sickness which took a lot out of him. We were extremely disappointed because at the time this was the only alternative therapy, we were exploring for Rocco that gave us a lot of hope, but we knew this was not sustainable. I did some research and found that CORE Therapies in Florham Park, NJ had recently started offering PBM. Our family is very familiar with CORE Therapies and Dr. Jason Sonners who owns the practice. When my dad was about to be released from the sub-acute rehab facility, I was so desperate to find some sort of hope for our family. I researched all different kinds of alternative therapies and found a lot of hope in Hyperbaric Oxygen Therapy (HBOT) as you know from some of my earlier updates. I reached out to anyone who would listen to me begging for help, and out of the goodness of his heart Dr. Jason responded. He worked tirelessly to get us an Oxygen Chamber and Oxygen Concentrator in my parents’ home at a discounted medical professional rate. I feel like whenever I lose hope or things seem dark, God always points us back in the direction of CORE Therapies and Dr. Jason to renew our hope and open doors to new possibilities.
After reconnecting with Dr. Jason, he informed me that they had brought on a Neuro Rehab Specialist, Dr. Marc Funderlich, who could help. From the very first day we met Dr. Marc, really wanted to take a comprehensive holistic approach to Rocco’s recovery. The first step was to do intensive and comprehensive bloodwork to see if there are any other afflictions that are preventing my dad from progressing in his recovery. The bloodwork revealed that Rocco had EXTREMELY high inflammation levels. When a person’s inflammation levels are raised, any therapeutic efforts automatically try to fight the inflammation before the actual source of the problem. We heard this might be a risk when we were trying the Adult Stem Cell Therapy in San Diego. We knew that the stem cells might try to fix any inflammation first instead of the actual brain injury, but we did not know that you could identify a person’s inflammation levels through their blood work. This was the first time in Rocco’s recovery that a full and comprehensive blood panel was even suggested. In order to assess a person’s inflammation level, one must look at the CRP number on the blood test results. CRP stands for “C-reactive Protein” which is produced by the liver and if there is a higher concentration of CRP than usual, it is a sign of inflammation in the body. An average person’s inflammation number should be under 0.5. Rocco’s number was 116.63 which signified a “massive inflammatory response”. We felt like we finally had an answer as to why certain things had not been working for my dad. Dr. Marc put Rocco on a strong treatment of liquid supplements called Turmero and Resvero which has lowered his inflammation significantly. The initial test was done in August of 2019, and by October 2019, his CRP went down to 2.71. His last test in July of 2020 showed his CRP to be 1.09. We will find out the results of his latest bloodwork in the coming weeks. However, even though we have seen this great improvement, there is still a lot of work to be done. The bloodwork also revealed that Rocco has a low Red Blood Cell count and some Iron deficiency which we are working towards improving. Dr. Marc feels very strongly that recovery will be more effective when all these ailments are stabilized which gives us a lot of hope. We have actually seen some great improvements over the course of this year that we attribute to his inflammation levels lowering. While we are so disappointed and frustrated that we only learned about the importance of examining Rocco’s bloodwork to understand the healing process at the end of 2019, we must move forward and be grateful that we have this knowledge now.
In addition to the bloodwork analysis, Dr. Marc also utilizes a laser therapy like PBM but specifically targeted for stimulating the neurons in the brain. This therapy along with his physical therapy and occupational therapy at TheraFit were a part of Rocco’s weekly routine and we were starting to see some great progress. However, once March came around and the Covid-19 pandemic started surging in the USA it forced all the momentum we had with Rocco’s recovery to come to a screeching halt. From March until June Rocco received no therapy and he unfortunately did regress physically. The one silver lining is Roz made incredible progress with him with eating. Since she was going to be home all the time, she made it her mission to get my father eating again. I honestly could not be more in awe of her for taking on this very daunting task. By the end of 2018, Rocco was completely tube fed. He had too many swallowing issues and would vomit spontaneously which made it impossible to continue feeding him by mouth. Every day since March, my mom has prepared, mashed up, blended, pureed and fed my dad with the most incredible amount of patience and perseverance. I cannot stress this enough how difficult this task is because some side effects of therapeutically feeding a person with a traumatic brain injury are coughing, spitting, gagging sounds and neck tightening. I personally find it very difficult to do and so does our caregiver, Martin. However, my mother can do it because she and father have a very special bond. She understands his responses, knows what he needs and helps him get past the challenging parts. Thanks to Roz’s perseverance, Rocco eats 2 meals a day. He used to receive 4 bags of liquid nutrition through his feeding tube, but now he only needs 2.5 because of the meals he is orally consuming. Although everything he eats needs to be mashed or pureed to achieve a certain consistency some foods my dad has been able to enjoy are: Pancakes with butter and syrup, yogurt, scrambled eggs with cheese, applesauce, chili, meatloaf, chicken, mashed potatoes, cauliflower, and broccoli. He also can drink thickened water of the “nectar” consistency as opposed to the thicker “honey” consistency which is a great improvement. I am so proud of my mom and my dad.
In June when the cases started getting a little bit better, we had a Physical Therapist who we have known for years come to the house to work with Rocco. He was struggling to even stand with assistance which was something he used to do so well. While his right leg was still strong, it seemed that any progress he had made with the left leg was gone. We also started seeing Dr. Marc again for the laser treatment as well as looking into options for pain management. During the quarantine Rocco became very tight and stiff especially in his neck and right hand. Dr. Marc thought acupuncture might help and recommended an acupuncturist that practices out of CORE Therapies in the same building. She did a couple of treatments on Rocco but strongly recommended that we take him to see Dr. Clayton Shiu at the Shiu Clinic in Manhattan. He specializes in Neuroscience-based Acupuncture and she had taken a couple of courses that he taught. She said that she would do as much as she could to help Rocco, but if anyone could help him it was going to be Dr. Shiu. Dr. Shiu created the Nanopuncture System which is designed to optimize the brain and body through Neural Flush Treatments. The Neural Flush is a series of acupuncture points that resets the brain and nervous system like the way in which we reboot our phones or computers. The result is the body resets its neural control points to the correct settings optimizing the brain and body’s functions. This could be extremely beneficial to someone like Rocco whose brain and body are not working together due to the traumatic brain injury. So, we went to NYC on July 1, 2020.
Rocco has been seeing Dr Shiu every week for a double session since July 1st. My mother, father and Martin arrive in NYC around 11am for the first session which takes about an hour, they wait in a private room for 1-2 hours and then my father goes back in for a second session. This minimizes the amount of driving my mom must do each week in order for my dad to get the required amount to treatments. Dr. Shiu is a very compassionate man who has become extremely invested in Rocco’s recovery and Rocco responds so well to him and the staff. He always cooperates and often talks or responds to questions during treatment. Dr. Shiu is often amazed at some of the responses he makes and is impressed with his good cognition. For example, on my parent’s 39th wedding anniversary on August 7th he said the month and year they were married and said that they were married 39 years. Also, when my sister, Lisa, gave birth to his first grandson, Theo Rocco, he was able to respond that Lisa had a baby boy and that the middle name was Rocco when asked. We have so many anecdotal experiences like this over the past year of impressive moments of speech, but unfortunately his speech is very inconsistent. We will keep trying and praying that one day it clicks, and we can have conversations with him. One phrase my father frequently says with my mother is “Miracles happen to those who believe,” so we will never stop believing. Additionally, since he has started seeing Dr. Shiu, Rocco’s left leg has improved immensely. His left hand is also getting a little stronger too. When my dad went back to rehab at TheraFit in August, the therapists were shocked to see how Rocco was using both his legs while walking and showed strength in his left hand that he never exhibited before. Rocco’s swallowing has also improved. We really believe Dr. Shiu is helping him and unlocking parts of his recovery that we were unable to access before. Although the pandemic is surging again, we are continuing to take every safety precaution to make sure that Rocco can still receive therapy and treatment during this time. Although he has made so much progress with everything thrown at him this year, he is still making up for that big physical regression in the beginning of the year so stopping therapy again is not an option. I ask that you please keep my mother and father in your prayers for continued good health and safety during this time.
Finally, I wanted to thank each and every one of you for your generosity to this fund. One of my biggest fears and anxieties is that I don’t provide you with enough updates and we appear in some way ungrateful for your support. Nothing could be farther from the truth. Unfortunately, the more time that passes through the ups and downs of this new life that our family has, it gets more and more difficult to put my father’s recovery process into words. Passing the 5-year anniversary of Rocco’s stroke was especially difficult. Please know that if it were not for your generous donations, we would not be able to even explore any sort of road to recovery for my dad. It financially would not be an option. Insurance pays for only some of the Neruo-acupuncture but not all of it. Rocco goes once a week for treatment, and we hope to continue it indefinitely, so as you can imagine the out of pocket expenses add up. Also, the laser treatment and the supplements are not covered by insurance at all. Aside from the alternative therapies mentioned in this update, this fund has helped pay for Rocco’s caregivers, a handicapped van, extra in-home therapy sessions, Neurofeedback, a Hyperbaric Oxygen Chamber, an Oxygen Concentrator, Adult Stem Cell Therapy, PBM Laser Therapy and so much more. Without the financial cushion of this fund, we would not be able to explore these alternative options that are giving Rocco a fighting chance and our family so much hope. “Thank you” doesn’t begin to express the gratitude we feel. There simply are no words. Please continue to keep Rocco in your prayers and positive thoughts. Our family really believes in the power of prayer and power of positive thinking and visualizing Rocco recovering. Your love, support and hope mean everything to us.
I just want to leave you with my favorite moment of 2020 with my dad. I was over my parents’ house a few weeks ago trying to do some occupational therapy exercises with him at the kitchen table. As you can imagine, due to the pandemic my interaction with my dad was significantly impacted and it felt like every time I saw him this year, he was stiff and unresponsive. On this day again he was extremely tight and stiff and had both of his eyes closed shut. When his eyes are closed you can pretty much expect not a great therapy session. After struggling a lot to help him get his left eye open with the help of medical tape, he was able to participate a little bit but still not great. Out of no where he let out a big cough, which is typical for him due to his brain injury, which triggered his left eye to open wide. I felt like a saw my dad, like my old dad before the stroke, and he could see me for the first time in the longest time. His limbs and hands loosened. I said “Hey, Dad! There you are!” and he smiled. His face looked so relaxed. I asked him to touch my face, and he reached out to lovingly touch my cheek. We sat there in complete silence with his hand on my check, happy tears softly falling from my eyes, just staring at each other. That was the most at peace I had felt in a long time.
I know this year has been awful for pretty much everyone. So many lives have been affected and lost due to the global pandemic. As we leave this year behind and enter 2021, please hold those you love close. If you can’t be with them physically, hold them in your heart.
I wish you and your families all a very Happy and Healthy New Year!
August 19, 2019
Good Morning Everyone,
My dad has been making great strides in physical therapy with walking over the past couple of weeks. He is moving his left leg on his own to take steps without the use of a ball as a stimulus and with very minimal help from his therapist!
On the heels of this great accomplishment, I thought it would be a great time to give you all the information for the 5K Run/Walk for Brain Injury Awareness on Saturday, October 12th! Here is the general event information:
Where: 5th Avenue Pavilion in Bradley Beach, NJ
When: October 12, 2019
Check-in Time: 8:00 AM
5K Race Start Time: 9:00 AM
Walk Start Time: 10:00 AM
NOTE: There are 2 different sign up websites. One for the 5K Run and one for the Walk. Please pay attention to which one you are joining. Here is how you join:
To participate in the 5K Run, please register using the following link (Note: The only way to join "Team Rocco" through the site is to set up a fundraising page.): https://raceforum.com/bianj-5k-bb
To participate in the Walk, place register using the following link. When given the option to "Search for an Existing Team" click that option and enter "Team Rocco". Then select the option to "Join Team Rocco": https://sna.etapestry.com/fundraiser/BrainInjuryAllianceofNewJersey/walk2019/aboutEvent.do
This is the first time we are participating in this event, so there may be some sign up glitches. If you have any trouble registering please feel free to contact me at email@example.com.
We hope you can make it out to support a great cause providing support to TBI vicitims and their caregivers as well as raising TBI Awareness. Seeing all of the love and support of his friends and family at these Walks/Runs really lifts Rocco's spirit and encourages him to keep pushing towards recovery.
July 24, 2019
I'm sorry it has been so long since my last update. There have been quite a few changes and some uncertainty over the spring and summer with some changes that had been happening, but now I feel like we're at a place where I can write an update. It's important to me that I keep you all in the loop because you have been so generous to our family with all of your love and support.
First of all, a lot of people have been asking about the JFK Miles for Minds Walk/5K. While the therapists at JFK have been so great to my father, he unfortunately does not receive therapy at that rehab facility any longer, so we are not going to be participating in the even this year. It was a difficult decision to change therapy locations, but it's good to get a different perspective and approach. We still keep in contact with some of our favorite therapists who have since left JFK and they occasionally make house visits. However, on a bi-weekly basis Rocco now attends Physical and Occupational Therapy at Therafit Rehab in Middletown, NJ. Therafit's mission is to help people who have been affected by Neurological disorders become more independent, active, and mobile again. We are optimistic and are looking forward to Rocco making great progress here.
Don't worry, we are still going to participate in a walk/race event. It's a great way to motivate my dad and really feel the support of all of his family and friends. We are looking forward to participating in the Brain Injury Awareness 5K/Walk in Bradley Beack, NJ on October 12th. More details to follow, but mark your calendars!
Additionally, we have had to part ways with our caregiver, KJ. Change is never easy when it comes to finding a good full time caregiver so as you can imagine this was a difficult time for our family. However, since Easter we have been very fortunate to have found a new caregiver to live at the house with my parents. His name is Giga and he has been a great addition to Team Rocco. One thing we really appreciate about Giga is how motivated he is about providing Rocco with extra stretching and physical therapy throughout the day.
Something else that has been going on is 3 times a week since April, Rocco has been attending sessions at Hope Laser Institute in Easton, PA to receive Photobiomodulation. Photobiomodulation (PBM) is the use of a laser light to stimulate cells. The stimulation assists the cells to function more efficiently, repair cells when they are damaged from free radicals, and replace new cells when they die. This also believed to work in conjunction with the Hyperbaric Oxygen Chamber Rocco has at home and the Stem Cell Treatment Rocco received back in October. So far we have seen some good progress and this treatment is giving us a lot of hope. For example, the use of his left hand which was previously non-functional has greatly improved. He actually initiates spontaneous movement with that hand much more frequently and it using it to hold onto a walker. He also has more frequent speech (though still extremely minimal and not consistent) with his own independent responses not just repeating words. Finally, for those of you who have seen him recently, you can attest that he holds his head up much straighter now instead of having it droop to one side. If you would like to learn more about PBM and and Hope Laser Institute please visit their website: http://hopelaserinstitute.com/
Since this treatment is out of pocket and not covered by insurance, once again thank you from the bottom of our hearts for your donations. It's such a shame that many alternate therapies are not covered by insurance, but right now they seem to be our only hope. We have to try everything for Rocco. He deserves that.
February 10, 2019
Hi Everyone. First of all, I’m sorry I have not posted an update in 4 months. I know a lot of you look forward to these updates and it has definitely been weighing on my heart. My mother, sisters and I deeply appreciate all of your generosity, prayers and support, and it is certainly not my intention to keep you out of the loop. As I have said in years past, the holidays and winter months are the most difficult time for our family. Reminiscing of holidays past, the shorter days and cold weather makes it very difficult to stay positive sometimes. On top of this, it always seems that Rocco is extremely susceptible to illness and accidents in the winter. My father has endured stomach bugs, sinus infections and on Friday when I was initially trying to write this update, I got a call that his feeding tube fell out and he needed to be admitted into the hospital to await surgery. Thankfully the surgery went well and Rocco is back at home and doing well, but this is why it has been difficult to write an update. I really try to keep these updates positive and hopeful, but this time of year always proves difficult to do so. I hope you can understand.
Back in October, the Adult Stem Cell Therapy went well. Rocco did great flying across the country, and everything with the procedure went smoothly. As I stated in my previous update, it can take anywhere from 3-9 months to see results. While we have had some low points this winter, we have had some extraordinary positive moments that have really lifted our spirits and could very well be from the stem cell treatment. Rocco has been trying to open his right eye lately. Even though he can’t lift it on his own, due to the 3rd Nerve Palsy in his eyes, he will try to lift the eyelid with his finger until we tape it open for him. Also his left eye has begun to significantly straighten. There have also been times when on his Nu-Step Bicycle he has swiveled the stool on his own and pulled himself up as if to get off the bike because he has finished his exercise. He has also had great moments of talking/communicating which is very hopeful. The consistency of these occurrences is still an issue. One day will be great, and the next week will be nothing. We’re hoping that in the months to come this will improve.
Now more than ever my dad really needs the support of his friends and family. As time continues to go on it is very easy to lose hope and give up. Thank you to everyone who keeps reaching out with positive messages of motivation for Rocco. It means the world to us and to him. Please continue to keep him in your prayers, visualize him as he once was and reach out when you can. Phone calls, FaceTimes, visits, text messages, emails etc. are the best medicine for his spirit. I know he will walk again, talk again, eat again and live a life worth living again. We have to be persistent, keep him motivated, never give up, and most importantly never give into fear. It’s so easy to be afraid, but I refuse to let that fear sink in.
(Photo is of Rocco and Roz on Christmas Day)
I’m sorry that it has been so long since my last update. We have had a lot of things in the works this summer, and now I feel like I can finally share them with you. The picture at the top of this update was from yesterday when the whole family went apple picking together. Rocco had a great time doing his favorite fall activity!
First of all, thank you, thank you, THANK YOU to everyone who donated and came out to join Team Rocco on July 29th for the 10th Annual JFK Miles for Minds! Including day of donations and last minute registrations, Team Rocco raised just over $2,000 to benefit the Center for Brain Injuries. This is the most we have ever raised, and this year Rocco crossed the finish line with his walker! Some nurses and therapists were there from the Brain Trauma Unit where Rocco was first placed after the stroke and they were blown away by his progress. Here is a link to the full video of my dad crossing the finish line with the help of his two therapists, Christine and Angie:
In my last update I talked about our struggle with Rocco’s nutrition. We bought Liquid Hope, an organic whole foods feeding tube formula and meal replacement that is made with blended real food, but it was too thick to go down his small feeding tube. In August, Rocco had a tube replacement surgery to replace the small tube with a bigger one and it was a success. We are now able to give him the organic food blend which is much easier to digest and better for his brain development and overall healing. Also, in the beginning of September, Rocco had another eye sling surgery. It seems that overtime his eye sling, which helped his left eye open up when he raised his eyebrows, got very loose. We started having to tape his eye open again instead of my father having the independence of opening his eye on his own. During this second surgery, the doctor tightened the eye sling and removed some loose eyelid skin. So far this surgery seems to be a success, however his eye is still a little swollen which makes it hard for him to open it all of the way. This is expected and a part of the recovery process. The eye is a very sensitive area, so when it undergoes surgery it can take weeks for swelling, bruises and soreness to go down. There are moments where Rocco does open his eye and it looks great! Here is a video of my mother talking to my father about a week or so after the surgery:
As you all know, our family is constantly looking into new treatment options for Rocco. He has shown so much excellent progress and we refuse to give up on him. This summer we have been extensively researching Adult Stem Cell Therapy. Before I continue, please do not confuse this with the very controversial Embryonic Stem Cell Therapy which is not performed in this country. Adult Stem Cell Therapy is the process of extracting a person’s own stem cells from their own adipose cells, or fat cells that make up fat tissue. The adipose tissue is extracted through a minor liposuction procedure. Although Rocco is very thin, the amount of fat needed to be extracted is very minimal and it can be taken from his belly, thighs and flanks if necessary. Once the stem cells are extracted from the adipose tissue, they undergo an intense filtration process, photo activation under LED lights and are combined with platelet-rich plasma to wake up the dormant stem cells. After this process, the activated stem cells are injected vascularly through the nasal cavity where they are absorbed through the blood-brain barrier. Normally the blood-brain barrier blocks anything from being absorbed into the brain, however, during this procedure Rocco will be given mannitol. Mannitol is a natural sugar that will trick the blood-brain barrier into thinking that it is dehydrated which will trigger it to absorb extra fluids, including the activated stem cells. Rocco has undergone various extensive blood tests to ensure that nothing bad will be absorbed into the brain during this process. Due to their natural homing ability, once his activated stem cells are through the blood-brain barrier they will seek out Rocco’s brain injury, and regenerate themselves into new healthy brain tissue replacing the damaged brain tissue. We are told that it can take up to 3-9 months to see results, although some people start so see results sooner. During this time Rocco will be on a strict diet of the organic food that I mentioned earlier, extensive use of the Hyperbaric Oxygen Chamber that we have in the house, and extra physical, occupational and speech therapy. Since these are my father’s own cells, there is no risk that his body will reject them. The main risk is that it will not work, and that is a risk we are willing to take. Rocco deserves a chance to try.
While Stem Cell Therapy is practiced and performed in the United States and there are many clinical trials, it is not FDA approved and it is completely out of pocket. Although it is not FDA approved, I must inform you that in September of 2017 the U.S. Senate passed the “Right-to-Try” Bill, and in August of 2018, the President signed the bill putting it into law. The “Right-to-Try” Law allows the gravely ill to bypass the FDA for experimental medicines and treatments. Therefore, our family seeking this treatment for Rocco and the facility performing the treatment is not illegal. As you can imagine, with a non FDA approved treatment we have had to weed through many facilities, practices, practitioners, etc. that we did not feel were legitimate or knowledgeable enough to entrust my father in their care. We have decided to go with StemGenex located in San Diego, California. This is the only facility for which I have found legitimate testimonials showing the before and after of patients as well as the only facility that I have found with a testimonial from someone with a traumatic brain injury. StemGenex also operates out of the Pacific Coast Surgical Center which is a Nationally-Recognized Accredited Surgical Facility by the Accreditation Association for Ambulatory Health Care. They also have several registered clinical trials with the FDA.
I assure you, my mother and I have dug up all of the dirt we could find on StemGenex. We looked into every lawsuit that has ever come up against them and any of the doctors. We have read court documents, been on long phone calls with patient advocates, doctors and lab directors asking extensive and deep questions into this procedure and the facility. The lawsuits are minor and are usually because the procedure did not work on some people, which is a known risk. They do not promise a cure, they promise a treatment. If the concept of lawsuits makes you nervous, I urge you to google the name of any major hospital of your choice with the word “lawsuit” after it and you will see MANY results of lawsuits against them. Lawsuits, unfortunately, are a big part of the medical world. With all of this said, as a family we have decided that this is still the right decision and the best chance we can give Rocco.
Next Sunday, October 7th, Roz, Rocco and Giorgi (Rocco’s temporary care giver) will be flying from NJ to San Diego. I will already be in Seattle for my brother-in-law’s wedding from the night before, so I will meet them at the San Diego Airport. On Monday, October 8th, we will go to StemGenex for my father’s pre-procedure appointment where we will meet the doctors, nurses and lab director. On Tuesday, October 9th, Rocco will undergo Adult Stem Cell Therapy. On Wednesday, October 10th, we will have a follow up doctor’s visit at StemGenex where we will also go over the necessary things to do at home in order to give the stem cells their best chance of working. Then we all fly home together later that night.
As I mentioned before, this treatment is not free and is not covered by insurance. Overall it is costing us a little over $17,000. This would not be possible without all of you and this fund. We are sincerely and totally grateful for you all, which is why I feel so terrible keeping you all in the dark for so long about what has been going on. I just wanted to make sure everything was finalized and definitely happening before I said anything. We are so truly blessed to have such an amazing support system of friends, family and sometimes even complete strangers.
We ask for your prayers and positive thoughts as we make the journey to San Diego and as my father undergoes his Stem Cell Therapy and in the following months after. As I expressed before, we did not make this decision lightly or on a whim and while we are confident that this is something we need to do for Rocco, we still are very scared and nervous. Even though it is definitely out of our comfort zone, my father deserves the right to try. This is the most hope we have had in a while and it is something we must pursue. He has expressed to us that he wants to do this and he is not giving up, so we can’t give up just because this is far away.
Please keep praying and believing. He will get better. He will have his own life back again. He will overcome this.
July 28, 2018
Tomorrow is the 10th annual Miles for Minds 5K and Fun Run/Walk at Roosevelt Park in Edison, NJ to benefit the JFK Johnson’s Center for Brain Injuries. Since Rocco’s stroke, our family and friends have participated in this event every year. This will be our third year, and so far it’s turning out to be the biggest Team Rocco yet! Even though pre-registration is over, you can still join us tomorrow and sign up when you get to the event. Registration starts at 7:30am, the Fun Run/Walk starts at 8:30am and the 5K starts at 9:00am. I know it’s an early start to the day, but it is such a great morning filled with love, hope, and support. It also serves as a celebration for how far Rocco has come over the past year. Join us as we give back to an institution that has given so much to our family.
Rocco has an excellent team of therapists at JFK who are always going above and beyond to help him achieve his rehabilitation goals. They push him to be the best he can be while also remaining kind and compassionate. They truly believe he will recover and enjoy being a part of his journey. Pictured with my parents above is his incredible team, (from left to right) Angie, Nicole and Christine. They will all be at Miles for Minds tomorrow as members of Team Rocco, along with Aly, an additional speech therapist that has started to come to the house. Since he is doing so well in Physical and Occupational Therapy, their current goal is to have Rocco cross the finish line at the end of the walk! Here is a link to a video of Angie and Christine working on walking with Rocco:
As you can see, we have started to have to tape Rocco’s eye open again even though he already had the eye sling surgery to be able to open it. We have been talking to the surgeon and he feels that over time the sling may have gotten loose and therefore another procedure should be done to tighten the sling. Since Rocco has 3rd Nerve Palsy due to the stroke, he needs this assistance to open his eyes on his own. We are still only doing the procedure on the left eye as the right eye is not completely centered. In the future, we would like to correct the right eye as well, but once that eye is open Rocco will have to undergo extensive vision therapy in order to get both eyes working together again. This can be extremely frustrating and lead to a lot of painful headaches. Right now Rocco has a long way to go with his physical, occupational, speech/swallowing therapies that we don’t want to necessarily throw this into the mix. Right now procedure to correct the left eye sling will be on September 5th, but we’re hoping they can fit him in sooner.
Another challenge we are currently undertaking is Rocco’s quality of nutrition. Since receives his main sustenance through his feeding tube, we are looking into tube feed that is real food and not the canned gloop that is primarily made of corn syrup for pure caloric intake. A lot of people who have GI tubes like Rocco have said that the canned feed makes them extremely full, nauseous and is hard to keep down. We have had this exact problem with my dad. We are hoping that by changing his diet it will promote proper digestion and lead to him feeling hungry again to ultimately try eating orally more consistently again. We are working with his primary care physician in order to get “Liquid Hope” approved by Medicare. Liquid hope is an organic whole foods feeding tube formula and meal replacement that is made with blended real food. We have paid out of pocket for the first case, and unfortunately found that the mixture is very thick and difficult to get down Rocco’s tube. If you remember, Rocco had to have emergency surgery a while back when he pulled out his feeding tube. Due to the nature of the emergency procedure, the replacement tube that was put in, was much smaller than the original tube. We are now working with his gastroenterologist to schedule a time to have a bigger tube put back in. We don’t want this to get in the way of proper nutrition. There have been many studies about how certain foods help brain function and brain development so we are really hoping this pushes Rocco in the right direction.
Thank you for always keeping Rocco in your positive thoughts and prayers. We are trying our very best to give him the best chance and the best quality of life possible. As I always say, he’s not giving up so we’re not giving up.
June 17, 2018
Happy Father’s Day!
Rocco had a great day spending time with the whole family today at our little shore house in Lavallette, NJ. As many of you know, Lavallette is my father’s happy place and this little house holds such a special place in his heart. His parents bought the house with the dream of having many future generations of the Casso family enjoying the Jersey Shore and making memories together. After they passed away, my father took it upon himself to carry on their dream as his own. When Hurricane Sandy hit the Jersey Shore, Rocco was so distraught he was actually sick over it. Watching the news coverage of the devastation and not knowing if our little house had survived was agonizing. The minute homeowners were allowed back down to check on their properties, my father was there. There was 5ft of water in the house, but thankfully that was the main extent of the damage. Others were not so lucky. With the help of his brother, Frank, and his two son-in-laws (who were his future son-in-laws at the time) as well as other friends and family who would come by to lend a helping hand, Rocco was able to save the shore house. He was determined to keep his mother’s dream alive to have her grandchildren and great-grandchildren enjoy this little house. Now, since my father’s stroke, we have all come together to keep the shore house as a place where we can all enjoy the beach, a good barbecue and most importantly, each other. Today Rocco spent the day with his wife, brother, sister-in-law, daughters, son-in-laws, nieces, nephews, great-niece, great-nephew and his little granddaughter. My mom said to my dad, “Rocco, wouldn’t your mother be proud? This is what you always wanted,” and he nodded with a big smile on his face. Family is everything.
In addition to this great day, Rocco has been making great progress in all of his therapies. Here is a video of Rocco working with his awesome Physical Therapist, Christine and two other therapists on the treadmill:
He is really initiating all of his steps, especially with the left leg which is has always been a struggle for him. Even though the two therapists are guiding his legs, they he would not be able to be moving so quickly and consistently if he was not putting in the work. Rocco is also making great strides in speech. My mother is very determined to get him to talk again. Roz has been working with his speech therapist at JFK in order to come up with exercises that she can do with him at home. They have determined that Rocco has Apraxia which is defined as the “Inability to perform a movement or task when asked despite having the desire and physical capability to carry it out.” This means that even though he may want to say something, he may not have the ability to do so at this time. His Speech Pathologist, Sabrina, has done a great job of coming up with speech exercises that cater to this disorder. Recovery from Apraxia is all about spontaneity. Rocco does much better when asked random questions that he can freely respond to rather than the “repeat after me” method. While his speech is still not consistent, when he does talk he is able to get a lot more out. Recently, when working with him at home, Roz started asking him random questions. She asked, “How do you bake a cake?” and he responded, “Put it in a pan.” Then she asked, “Then what?” and he responded, “Put it in the oven.” She also asked, “What do you need to fly a kite” and he responded, “Wind.” Another highlight was when she was working on opposites with him. She asked, “What is the opposite of good?” Most of us would say bad, but Rocco responded, “Evil.” All of these are this independent thoughts that he is able to get out with spontaneous conversations. My mother has such a gift for carrying on these conversations with my dad. I normally get overly excited and run out of things to say, but my mom is so patient and creative with her speech therapy. By being persistent and challenging him, she was able to determine that Rocco can actually read and spell. She wrote HOLLY very big on a dry erase board and she asked, “What does this say?” and my dad responded, “Holly.” Since he was doing so well, when she asked him to spell some things she decided to record it. Here are 2 videos of Rocco spelling (I was completely blown away when I saw this):
Last but not least, I just want thank everyone who has donated and/or signed up to join Team Rocco at the 10th Annual Miles for Minds 5K and Fun Run/Walk to raise money for the JFK Center for Head Injuries. No one’s brain trauma, mental disability, stroke, etc. is ever the same. Each patient’s recovery and needs are unique to that individual and needs to be treated as such. It is so important for the Center for Head Injuries to keep up with the latest treatments, therapies and methods in order to give their patients the best quality of life possible. We would be totally lost without the incredible therapists at JFK and this is a way for us to give back. The event takes place at Roosevelt Park in Edison, NJ on July 29th. If you’re on the fence about signing up, I urge you to take the plunge and join us! Registration starts at 7:30am and everything is over by around 10am. It’s a really great event that really energizes our family and especially Rocco. Seeing all of the love and support that he has around him gives him that extra push to keep going. If you’re interested in joining Team Rocco or learning more about the JFK Center for Head Injuries please visit: http://5k.jfkmc.org/goto/TeamRocco2018
Thank you all for taking the time to read these updates and for always keeping my father in your thoughts and prayers. Please continue to think of my father as you knew him and visualize him getting better. He is getting there, and any positive energy, thoughts and prayers you can send him will only help. As long as we continue to believe and never give up, there’s nothing he can’t achieve.
I love my father with all of my heart. Even in his current condition he is still my hero and my role model. He continues to teach me about patience, perseverance, unconditional love, compassion, empathy, tenderness and inner strength. He is so strong. His spirit is so strong, and when he can’t be strong I’ll be there to lift him back up. I am so thankful every single day that Rocco is my father. He is the best there is. He was then, and he is now. Happy Father’s Day, Daddy.
May 7, 2018
Good Morning Everyone!
Rocco continues to do really great with his physical and occupational therapy. He continues to take more initiative with his left leg and is starting to use it to support his weight while standing. It still isn’t at the level of the right leg, but he is definitely making progress. We continue to work with him on standing with the walker at home. His current record for standing using the walker with no one touching/helping him is 1 minute and 10 seconds.
At therapy, they have started putting him on a treadmill using a harness to support his weight. This is an excellent way for Rocco to practice the movements of walking without worrying about falling and really promote moment with that left leg. In a recent therapy session, his therapist said that he did the best he ever did on the treadmill!
We are going to try a different approach to address the swallowing/saliva issue. A recent theory is that his neck muscles have weakened making it difficult to swallow. This makes sense because most of the time, Rocco does not keep his head upright. In order to strengthen his neck and hopefully promote easier swallowing, Rocco will be fitted for a special neck brace. We are hoping and praying that this will help him swallow so that he can eat again. We really want him off of that feeding tube. We are so appreciative of all of your thoughts and prayers for Rocco regarding this struggle. We really believe in the power of positive thinking and prayer, so it really means the world to us. We’re not going to give up.
Now that the weather is getting nicer, we’re looking forward to doing more outdoor activities with my dad like fishing and taking day trips to the beach. Another thing that comes along with the warm summer weather is the Miles for Minds 5K & Fun Run/Walk! This year, the event will be held on Sunday, July 29th at Roosevelt Park in Edison, NJ (same location as the years before). As I have said before, we are so blessed and thankful for the exceptional therapists at JFK Medical Center, who continue to go above and beyond to help improve Rocco’s quality of life every day. Join us as we show our support the JFK Johnson’s Center for Head injuries in their constant fight for better solutions and treatment for people like Rocco. This will be our 3rd year participating and it is something we all look forward to. It is a wonderful morning of love, support and hope that really rejuvenates our spirit to keep fighting. Last year Rocco even crossed the finish line at the end of the walk!
If you would like to join us this year, please visit http://5k.jfkmc.org/goto/TeamRocco2018
March 27, 2018
Good Morning Everyone,
I know it has been a very long time since my last update. I find that winter is probably the toughest season for our family and Rocco. Ever since the stroke, things just seem to go wrong in the winter. Sickness, hospital visits, being cooped up inside and therapy sessions being cancelled due to weather. It’s overall a depressing couple of months, so I chose to take a break from the updates for my own mental health and spend this time focusing on my father. I really enjoy writing these updates, but when there’s no good news to report it can get very discouraging.
Thank you to everyone who has reached out to see how Rocco is doing and to all of you for keeping him in your thoughts and prayers. They are working, we just have to be patient. Being patient, however, is torture sometimes. Although we had a rollercoaster of a winter, since my last update he has made so much more progress so I wanted to do a brief synopsis to get you all up to speed on how Rocco is doing.
Shortly after Christmas, we made the decision along with his speech therapist, to go back to primarily feeding him through his feeding tube. Rocco was coughing, gagging and vomiting far too regularly for us to safely feed him orally. This does not mean that he will never eat again. Everyone seems to believe that this excessive coughing and gagging is neurological. The hope is as his brain heals, it will get better and we will go back to feeding him orally. In the mean time we will still work on his swallow at a therapeutic level, but he has become so thin that our priority is for him to get proper nutrition and get his weight up. The only way we can guarantee the amount of calories he is consuming is through the can. Ever since this switch, his vomiting has gone down significantly. There have been one or two occasions due to the excessive coughing, but it used to be 1 or 2 times a week. His coughing as also gotten a little bit better. While some days his cough is horrible, some days he doesn’t cough at all which is extremely hopeful.
Unfortunately, we had one hospital fiasco at the end of February. Rocco pulled out his feeding tube. I will spare all of you the frustrating details of dealing with the incompetent people in the Overlook ER who kept us waiting for over 4 hours and then told us that we waited too long to put the tube back in. Long story short, Rocco has a new feeding tube, and thankfully there was no infection or bleeding when all of this happened.
Not everything that happened over the winter was negative. Since we were trained by his therapists, my husband, Alex, and I have been working with Rocco on standing using a walker a minimum of twice a week. The progress he has made since the New Year is amazing. His left leg has always been very weak, but recently he has started planting his left foot and using it to support his weight. His left hand and arm are also getting stronger. He is initiating much more with that side which is exciting because Rocco has always been a lefty. Alex and I have also been working a little bit on walking, kneeling and reaching with him. Overall, his core strength is getting much more stable as well. At the last insurance evaluation, Rocco was able to sit up without any support on a raised mat for 3 minutes and 45 seconds. Getting trained by his therapists has proven to be extremely beneficial to my father’s progress. His therapists can see the difference and improvements in his sessions, which allows them to set higher goals for Rocco. Currently, Rocco goes for a one hour session twice a week where his physical therapist and occupational therapist work together with him. Since he has been doing so well, they want to extend his sessions to be 30 mins Physical Therapy, 30 mins Occupational Therapy and then 30 mins Combined Therapy. Here is a link to a video of Alex and I working on standing with my dad:
Rocco’s speech has also improved, although I do have to unfortunately report that it is not consistent. He has been doing excellent in his speech therapy sessions, so much so that his therapists are all extremely excited by his progress! What is a little bit frustrating about this, is we don’t normally see this at home. We hear how great he is doing and scoring between 90-100 at his speech sessions, but then when we try to talk with him, he is usually very quiet. However, last Thursday my mother had a little conversation with him. Some of the highlights were when Roz asked him “Who takes care of you?” expecting to hear him say KJ, Rocco responded “Jesus.” Then when asked “Rocco, do you know why you’re in a wheelchair? What happened?” his response was “Blackout.” Then when asked if it was scary, he nodded his head. This exchange is so significant because these are not phrases that our family ever says to him. While we are very strong in our faith (it is the only thing that gets me through the day sometimes), and while we pray with Rocco, we have never used the phrase “Jesus is taking care of you.” That was his own independent thought. The same thing with calling his stroke a “blackout.” Over the course of the 2.5 years we have never called his stroke a blackout. That was his memory of the day that it happened. As heartbreaking as that is to hear that he remember the blackout of his stroke and the fear that he felt, this is such great progress not only for communication but for his memory. Another highlight (especially for all of you who are a part of my father’s fishing family) happened later that evening when my parents were watching a fishing show and Roz said “What are they fishing for?” and Rocco correctly responded “Steelhead.”
I apologize for the extremely long update, and I’m sure that I’m leaving some stuff out, but for now I think that is a pretty solid recap of how Rocco’s winter has gone. I promise I will be doing these more frequently again so they won’t be so lengthy. We are hopeful for new beginnings in the spring and more great progress from Rocco. Please continue to keep my father in your thoughts and prayers, and send some positive energy his way. The endless support of this community of friends and family helps more than you will ever know. My father is an extremely loved man not just by all of us who have known him before his stroke, but even by many people who have come into his life since the stroke. KJ (his caregiver) calls Rocco his American father, takes exceptional care of him and truly believes that he will get better. Georgi (our temporary caregiver when KJ has time off) works on stretching and resistance training with Rocco and is overcome with joy as he watches my father progress. JulieAnne, Christine and Sabrina (his therapists) always say how Rocco is their favorite patient and they go above and beyond to come up with the best therapy plans for him. JulieAnne’s father even mentioned how special and inspiring Rocco is to JulieAnne during his speech at her wedding. My father has so many positive people in his life lifting him up and rooting for him, not to mention the incredible drive and persistence that he continues to exhibit every day. He is too special of a person not to overcome this. I know he will get there.
December 19, 2017
As Christmas is fast approaching, I am so thankful that I have some good news to share! Yesterday, Rocco’s therapist said that since he is doing so well, she wants him to start using a walker at home. This doesn’t mean that he won’t be using the wheelchair anymore, but it definitely a step in the right direction. The fact that it is safe enough for us to work on his standing and walking with a walker at home is amazing progress. Along with his stationary bike, we can really work with him on his balance and muscle strength.
Rocco also did extremely well in speech therapy. His therapist usually gives him a percentage score as to how responsive he was with her, and yesterday he scored a 95%! That is the best he has ever done in speech. I know this may be confusing because Rocco still struggles with speech and his talking is definitely not consistent, but once again this is a step in the right direction. Rocco was smiling from ear to ear yesterday as we talked about how well he did and our plans for getting his walker.
All of your positive thoughts and prayers are slowly but surely working, so please keep them coming. Ever since Rocco’s stroke, the holidays tend to be a really hard time for our family. We are so thankful for the visible progress that he has made. Despite all of the ups and downs this year has brought us, we are looking forward to all of the progress Rocco will make in 2018.
Thank you for all of your continued support. We are truly grateful. Wishing you and your families a very Merry Christmas and a Happy & Healthy New Year!
December 9, 2017
Good Morning Everyone,
Ever since Rocco has been home from the hospital he has had some pretty severe stomach problems. We even had to bring him to the emergency room last Sunday because his gastroenterologist was afraid that he had internal bleeding. Thanks to the great staff at the Overlook Emergency Room in Union, we were able to get the results within about 4 hours that he does not have internal bleeding and we were able to bring him back home. I realize that seems like a long time, but for anyone who is as familiar with emergency rooms as we are, 4 hours is nothing. While that was a relief, we still have to get to the bottom of these stomach issues because it is severely impacting his eating and energy levels.
Aside from these problems, Rocco has been doing fairly well in therapy. We were really nervous about this because after spending a week in the hospital, we usually expect him to significantly regress. Thankfully, his therapists have been very pleased with his participation. He still isn’t back to the level where he was prior to being rushed to the hospital, but that could also be due to these other ailments that he is facing.
Please continue to pray for Rocco and send him as many positive thoughts as you can. All of your love and support means so much to our family. We constantly share with Rocco how many people are thinking of him and pushing for him to get better. It brings a smile to his face and motivates him to keep going. We really need to get to the bottom of what is causing all of these stomach problems as well as his chronic cough, but we’re not giving up. We are determined to find a solution and get Rocco back to where he was so that he can progress even further.
November 14, 2017
Good Morning Everyone,
Rocco was discharged on Friday afternoon and is now home. While he encountered numerous additional ailments and complications due to negligence and inexperience on the part of some of the nursing staff, he is now doing much better. We are in communication with the hospital to ensure that none of what Rocco experienced happens to any other patient. He has a few more days left of the antibiotic he was placed on, as well as a nebulizer to help with the cough. The cough still remains a mystery to most medical professions and our family, but hopefully the nebulizer will provide some sort of relief.
Please keep Rocco and our family in your thoughts and prayers. We could really use some positive thoughts and positive energy after dealing with the negativity and ignorance of the doctors and nurses in the hospital for a week. They haven't seen how much progress Rocco has made like we have. We know he will continue to improve. He is determined and we are determined.
November 9, 2017
Good Morning Everyone,
I just wanted to send a quick update to let you all know how Rocco is doing. He had bacterial pneumonia as well as a bad UTI. Thank goodness we brought him to the hospital because the infection was starting to affect his liver. Thankfully, he no longer has a fever and his white blood cell count is down which means he is getting better. He still has a horrible cough that sometimes sounds like hes choking which is very alarming. Last night, the doctor ordered him to have a breathing treatment every 4 hours. We are really hoping and praying this makes a difference, because this cough is really getting out of control.
As always, thank you for all of your continued thoughts and prayers.
November 7, 2017
Good Morning Everyone,
I would first like to apologize for not keeping up with the updates as well as I used to. All of your love, support and the power of prayer are and extremely important part of Rocco's recovery and I believe that keeping you all in the loop is vital to that. As you all know, sometimes life gets in the way, but I will do every effort to get back to my weekly updates.
Since my last update, we have been on a roller coaster ride of ups and downs. Rocco's tube surgery still remains to be a success, however we are still very discouraged by how often he still needs to use it, primarily due to his excessive saliva and coughing. We are still actively looking for a solution to this because we believe it is the biggest thing hindering his recovery. Not only does it affect his eating, but it effects his ability to try to speak as well. On a positive note Rocco has been doing great in physical and occupational therapy. Thankfully he is doing so great in these areas that the insurance company is still approving therapy sessions, which means that even in their very critical eyes he is progressing.
Unfortunately, we had to rush Rocco to the hospital last night. He had a fever of 104 and was uncontrollably coughing and vomiting. Since he is so thin, this is extremely concerning. So far he has had a chest x-ray, blood work, and a UTI test performed. The test came back positive that he has a UTI, but we are not sure if that is the only problem. He is getting fluids and an antibiotic through and IV and he seems to be much more comfortable.
I will keep updating this page to let you all know how he is doing. We ask you to please send Rocco your positive energy and prayers for a speedy recovery from whatever is causing this. We hope to get him back on track to continue his fight of overcoming this TBI as soon as possible. Thank you all again for your endless love and support. My father is very loved.
September 5, 2017
I just wanted to give you a quick update. Rocco did very well over the weekend. Yesterday we even had a nice day with the family at the park enjoying the weather and even fishing a little bit.
Rocco had his scheduled surgery this morning to replace his feeding tube and he did great! Everything went well with no complications. Thank you all for continuing to keep Rocco in your thoughts and prayers. In order to have the tube completely come out, he needs to be able to eat consistently for 3 months. We all hope and pray that the next time we have to come back to the hospital is to take the tube out for good.
September 1, 2017
Good Morning Everyone,
I just wanted to send this quick update to ask you all to say an extra prayer for my father this weekend. On Wednesday evening Rocco unfortunately vomited again, which is something he has been struggling with as you know. Then, on Thursday morning, it was discovered that his feeding tube has a small leak in it. Rocco is scheduled for surgery on Tuesday morning to have the feeding tube replaced, however, if he vomits again we will have to take him to the Emergency Room to have an emergency procedure done which could be complicated. Rocco is on a blood thinner which he needs to be off of in order to have any surgery, but he would be unable to be weened off of the blood thinner in time for an emergency procedure. It is just not ideal. Please say an extra prayer or send some extra positive energy Rocco's way that he may be able to have a peaceful weekend and have a successful procedure to replace his feeding tube on Tuesday.
I hope everyone has a happy, healthy and safe holiday weekend!
August 18, 2017
Happy Friday Everyone!
I just wanted to send you all a quick update before heading into the weekend. Last week was a momentous week for Rocco. Last Friday, he went fishing for the first time since his stroke back in October of 2015. As you all know, you can't begin to describe Rocco without talking about his love of fishing. His wonderful Occupational Therapist, JulieAnne, coordinated with the non-profit Fishing Has No Boundaries to lend us adaptive fishing equipment. With the help of a fishing reel that made it easier for him to cast and reel in, as well as pole stand and some assistance, Rocco was able to hook and reel in 2 sunnies! He was so happy and so proud of himself. Being around family and friends while doing the thing he loves most is such a huge step for him in his recovery. Thanks to JulieAnne, we now have a new way to enhance Rocco's quality of life, as well as a new therapy technique.
Also this week, the NuStep Recumbent Cross Trainer arrived and has been installed. As I said in my previous update, this is the exact machine that Rocco uses in his therapy sessions, and is great for both his neurological and physical recovery. Having this machine available at home is such a wonderful blessing that would have not been possible without all of your generous contributions. This is a very expensive machine, but it is something that will really benefit him in the long run, especial if insurance stops paying for therapy. Not to mention, Rocco is so happy using the machine. At this stage of his recovery, there is little to nothing that Rocco can do on his own. However, once he is set up, he can completely operate the machine on his own which gives him such a sense of accomplishment and continues to motivate him. Here is a link to a video where you can see Rocco enjoying his new NuStep:
Thank you so much for all of your love, support and generosity for Rocco and our family. As you can imagine, this is an incredibly difficult road Every day we are reminded of how far we still have to go, but it's moments like this that really make us look back at how far we have come.
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