Rocco's Road to Recovery

Rocco's Road to Recovery

From Michelle Tweed

Due to the impending end of support from insurance, Rocco will soon be continuing his road to recovery at home. Any contributions toward his nursing care and therapy are very much appreciated.

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Update #56

about 1 month ago

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 michelle.t.tweed@gmail.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.

#TeamRocco

More Info

Rocco Casso, is an incredible husband, father and friend. On October 19, 2015 he suffered a stroke due to a blood clot in his basilar artery. Typically, the outcome for this type of stroke is either death or complete paralysis; however, Rocco has beaten those odds! Thanks so the extraordinary and fast efforts of the first responders and surgeons, Rocco should not be paralyzed at all, he has no damage to his vocal cords, and the overall brain damage is minimal. Due to the location of the blood clot, however, his stroke has resulted in a Traumatic Brain Injury (TBI).  As a result of the TBI he suffers from PAID Syndrome, also known as sympathetic storming, which causes him to loose control and become extremely stiff for prolonged periods of time. The stiffness has caused him to sweat, spike high fevers and is very painful for him. It also lengthens the recovery and rehabilitation process

Currently, he cannot talk, aside from a couple of stray words, he is fed through a feeding tube, he cannot walk, and he cannot open his eyes. Even with all of these things against him, the progress Rocco continues to make every day is truly inspiring. He works very hard in his physical, occupational and speech therapy sessions and has even started swallowing some applesauce and pudding in his speech therapy. He is really trying to speak which is encouraging and he somehow he finds a way to communicate what he needs/wants. His personality also finds ways to shine through. He perks up when we talk about fishing or cooking. Even though he gets sad and frustrated at times, as anyone would in this situation, when we say to him, "You are going to get better. Are you going to keep fighting?" he nods his head yes.

Rocco's Road to Recovery is not going to be an easy one, but we know he will get there. Unfortunately, since it will be a very long road the insurance company is trying to write him off as a custodial case, saying that the need to be in a rehab facility is not necessary. With his plan, he was supposed to be given until the end of April to stay at the sub-acute rehab facility, but the insurance company is already trying to stop funding. His doctors and therapists do not agree with this and and neither do we. We are going through every appeal process and legal action possible to get him the time he deserves; we are not taking this laying down. We know he has just scratched the surface of his recovery.

That being said, we are getting ourselves prepared for if and when Rocco is discharged, since we don't know when that will be (hopefully at the end of April). We fully intend to create the best rehabilitation environment for him when he comes home. We will be getting a live in nurse as well as have therapists come to the house a few times a week to work with him and to teach us what to do when they aren't there. Many friends and family have reached out to us and asked if there is anything they can do to help, so if you would like to contribute whatever you can towards his home nursing care and therapy sessions, we would appreciate that so much. You will be directly helping him get the care he needs to get back to the Rocco we all know and love. 

No matter what, we are not giving up on him. Anyone that knows Rocco can attest that he is a fighter and a strong man with a zest for life and so much to live for. We are a strong family unit that won't take no for an answer. We know what he is capable of and we know better than to underestimate him. Thank you from the bottom of our hearts for all of your love, support and prayers. It truly means the world to us! We know this will be a long road to his recovery, but we're ready to go down that road with him.

Love,

Roslyn, Lisa, Michelle & Raquel

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Michelle Tweed posted a new update:
about 1 month ago

Update #56

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 michelle.t.tweed@gmail.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.

#TeamRocco

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Michelle Tweed posted a new update:
about 1 month ago

Update #55

July 24, 2019

Hi Everyone,

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.

#TeamRocco

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Michelle Tweed posted a new update:
7 months ago

Update #54

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.

#TeamRocco

(Photo is of Rocco and Roz on Christmas Day)

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Michelle Tweed posted a new update:
12 months ago

Update #53

Hi Everyone!

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:
https://photos.app.goo.gl/TzsnZcPnWDKAQSMq9

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:
https://photos.app.goo.gl/iHj7rZ5veaJ9MEoS7

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.

#TeamRocco

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Michelle Tweed posted a new update:
about 1 year ago

Update #52

July 28, 2018

Hi Everyone,

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:
https://photos.app.goo.gl/uMz2Xn2DgA4NfP2XA

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.

#TeamRocco

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Michelle Tweed posted a new update:
over 1 year ago

Update #51

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:
https://photos.app.goo.gl/6jRb4orxuK447SPu8
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):

https://photos.app.goo.gl/7G8QFCvnHkpocAyq8

https://photos.app.goo.gl/KGPdqrZd84BjkrWWA

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.

#TeamRocco

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Michelle Tweed posted a new update:
over 1 year ago

Update #50

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

#TeamRocco

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Michelle Tweed posted a new update:
over 1 year ago

Update #49

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:
https://photos.app.goo.gl/5tXB54z7NjkmC6Hm1

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.

#TeamRocco

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Michelle Tweed posted a new update:
almost 2 years ago

Update #48

December 19, 2017

Hi Everyone,

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!

#TeamRocco

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Michelle Tweed posted a new update:
almost 2 years ago

Update #47

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.

#TeamRocco

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Michelle Tweed posted a new update:
almost 2 years ago

Update #46

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.

#TeamRocco

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Michelle Tweed posted a new update:
almost 2 years ago

Update #45

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.

#TeamRocco

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Michelle Tweed posted a new update:
almost 2 years ago

Update #44

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.

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #43

September 5, 2017

Hi Everybody,

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.

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #42

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!

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #41

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:

https://goo.gl/photos/iaW9VwhBrxBXUH116

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.

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #40

August 4, 2017

Good Morning Everyone!

Thank you so much to everyone who came out this past Sunday to join Team Rocco for the JFK Miles for Minds Walk/5K and everyone who donated. This year Team Rocco raised $1,600 for the JFK Center for Brain Injuries! That's $1,005 more than we raised last year! It was a really great morning and Rocco even got up to walk across the finish line. It is amazing to see the progress he has made over the past year. Last year we couldn't even push him along during the walk, and this year he crossed the finish line. Next year will only be better!

Rocco is really doing well in physical and occupational therapy. He is initiating movement using his left hand more and more without being told to. While it still is nowhere near as dexterous as his right hand, this is a huge improvement from not using his left hand at all since the stroke. He is also initiating movement with his left leg more, although it still has a long way to go. Even though he has been doing so well, we have been warned that there is a possibility insurance will either reduce the amount of therapy he receives or stop therapy all together sometime in the not so distant future. Of course we are going to try to fight that to the best of our ability, but we are preparing for it none the less. Thanks to all of your very generous support, we were able to purchase a NuStep Recumbent Cross Trainer. This is the exact machine that Rocco uses in his therapy sessions. He is able to operate it on his own and it is great for his neurodevelopment as well as his muscles and joints. Our goal is to get Rocco on the NuStep at least once a day. It really makes him so happy and gives him a real sense of accomplishment. We are also looking into the possibility of getting a standing machine, and we will also be paying for therapy privately if this should happen. If we gave up every time the insurance company told us to, we would not be where we are today!

As far as eating goes, his swallowing/coughing/saliva issue is still getting in the way. Rocco has received Botox treatments to resolve this issue, but they may take a few weeks to kick in. Hopefully we will see an improvement soon. We are also going to try taking Rocco to a doctor who specializes in neurological swallowing disorders. We're not giving up and please keep Rocco in your thoughts and prayers, especially for this issue. It is very frustrating and upsetting for Rocco and our whole family. While he is suffering through this, he still continues to make strides in speech therapy which is nothing short of amazing. He is now answers questions with his own thoughts. For example, "What does a cow give us?" and Rocco answers, "Milk." Or, "Where do you buy bread?" and he answers, "Bakery." We really believe that once we get to the bottom of this swallowing disorder, he will do even better.

Thank you, once again, from the bottom of our hearts for all of your thoughts, prayers and positive energy that you continue to send Rocco. Even though his progress may be slow and frustrating at times, he will get there. Even when he feels like giving up, or we feel like giving up, we will persevere. Slow and steady wins the race.

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #39

July 10, 2017

Happy Monday, Everyone!

I hope you had a nice Fourth of July last week! We had a really great weekend down the shore and spending time with family. Since my last update, we have been bringing Rocco down the shore to the beach house our family shares in Lavallette every Sunday for the past 3 weeks! This is a huge step and is a definite sign of his improvement. There is no way we would have been able to make these day trips last year. Maybe next year we will be able to have him stay the whole weekend. Slowly but surely he is making strides in his recovery. Rocco loves being down the shore. He gets very excited when he knows we're leaving to go, and even told KJ "I'm excited" last week. When we get to the beach and ask him where we are, he says "Lavallette" and when asked what street is our house on he says "Newark Avenue" without being told what to say. Lavallette also has a really great service where you can sign out a beach wheelchair for the day, for free. This has enabled us to get Rocco right on the beach so he can feel the ocean breeze, and he LOVES it. We are going to do our best to keep up these weekly trips, weather permitting of course.

In my last update, I mentioned that Rocco has been having a terrible time with over production of saliva, swallowing and ultimately accidentally gagging himself, making it impossible to keep food down. He had his appointment on July 3rd with his Spasticity Management and Neurologic Rehabilitation doctor to see if additional Botox injections could help. His doctor seems to think that this could be a viable solution, so Rocco has an appointment on July 18th to get the injections. He will also be receiving extra injections in his right hand to help with the stiffness. He is really trying to use his left hand more and more. Rocco will also be seeing his Primary Care Physician tomorrow to make sure that he is not experiencing any illness that could be causing this condition. We will also be consulting a new Ear Nose and Throat doctor on July 17th to get a second opinion on his ability to swallow as well as Rocco’s Gastroenterologist on July 21st to discuss the weight loss and vomiting. We also want his Gastroenterologist to make sure that Rocco’s feeding tube is still in good condition since he has had it for about a year and a half now. He also has a follow up visit with his Neurologist coming up. Hopefully he will be able to provide any neurological insight as to what could be causing this and how to resolve it. Finally, Rocco has an appointment on July 27th with his Rehabilitation doctor. She reviews and discusses all of his therapy including swallowing and speech. Together with his speech therapist, who will be working on swallowing with him this week, she may end up requesting another swallow test to be performed to make sure the consistency of the foods and liquids he is consuming are safe. As you can see, we are trying to attack this swallowing issue from all angles. It is definitely one of the more difficult, disturbing and frustrating issues Rocco has faced since his stroke. Our family asks for your positive thoughts and prayers especially at this time for finding a solution to his constant suffering with eating and swallowing.

In other news, Rocco’s incredible Occupational Therapist, JulieAnne, has been doing some research as to how to get him fishing again! As of last week, Rocco has joined and organization called Fishing Has No Boundaries (http://fhnbinc.org/). They are a non-profit organization that promotes adaptive fishing for people with disabilities. JulieAnne contacted the organization and they will provide some equipment to assist Rocco to be able to fish again. In the meantime, JulieAnne and the other therapists are working on different exercises with him to practice the arm motions required for fishing as well as building his strength up and controlling his grip. If anyone who has ever fished with Rocco or knows how to fish would like to get involved with getting him on the water again, that would be wonderful. One of my biggest regrets is the fact that I took fishing with my father for granted and didn’t learn how to do a lot of the technical thing by myself. I loved going fishing with him, but he always did everything for me, I basically just had to put the rod in the water. If anyone would be interesting in spending some time fishing with him and helping with the rods, bait, etc., you can reach me at michelle.t.tweed@gmail.com or at 908-577-8567. Please do not hesitate to contact me. Your involvement would be extremely appreciated and Rocco would be thrilled to be out on the water again with his buddies.

We are so blessed and thankful for the exceptional therapists at JFK Center for Head Injuries, like JulieAnne, who go above and beyond to help improve Rocco’s life every day. We are just 20 days away from the JFK Miles for Minds Walk/5K on July 30th. Join us as we show our support the JFK Center for Head injuries in their constant fight for better solutions and treatment for people like Rocco. It is a wonderful morning of love and hope that you won’t want to miss. Currently, Team Rocco is in 4th place for Top Teams who have raised the most money! Please consider joining Team Rocco at: http://5k.jfkmc.org/goto/TeamRocco

#TeamRocco

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Michelle Tweed posted a new update:
about 2 years ago

Update #38

June 23, 2017

Happy Friday, Everyone!

I'm sorry for the big gap in updates again, but we have had a very exciting and busy month. For those of you who don't know, my older sister, Lisa gave birth to a beautiful baby girl, Lilia Roslyn Frantzen, on May 19th. The picture above is from the first time Rocco met Lilia. He is a very proud grandpa!

Since my last update, Rocco has been doing really well in his therapy sessions. Recently they tried having him walk up and down stairs (with assistance) and he did really great. He has also had a good sense of humor and is doing well in speech therapy, though his speech is still nowhere near being consistent. As you can imagine, this is very frustrating. Some days he talks a lot and participates in conversations or in mass when we go to church, and other days may be complete silence. However, the experts we have spoken to believe that since he does have the ability to speak, even if it is sparingly, that is extremely hopeful for the future. We just have to keep pushing along.

Rocco’s coughing and eating habits still aren’t great. As I said in my last update, these coughing fits due to some sort of neurological trigger and overactive saliva production really prevent him from enjoying and finishing his meals. We are really concerned about his weight because Rocco has gotten so thin due to lack of eating and vomiting after coughing fits. However, he was just weighed this week and he did not lose any more weight which is wonderful news. He really has no more weight to lose, so we are praying for a gain the next time. We did some research and found out that Botox injections can help with the over production of saliva. As you may know, Rocco already receives Botox injections for his spasticity. We made an appointment with his Spasticity Management and Neurologic Rehabilitation doctor who performs his Botox injections on July 3rd. We are hoping the doctor thinks that Botox can help, but if not maybe he can recommend another solution. This is definitely not a sustainable condition so we have to get to the bottom of this.

Just as a reminder, on Sunday, July 30th we will be participating in the JFK Miles for Minds Walk/5K to benefit the JFK Center for Head Injuries. Last year was our first year doing it, and we had a really great turn out. It is a really fun morning and all proceeds go to benefit a great facility that continues to help Rocco progress every day.
Let's make this year even better than last year! If you want to join Team Rocco or learn more about the event, please click this link to sign up: http://5k.jfkmc.org/goto/TeamRocco

As always, thank you so much for constantly thinking of and praying for Rocco and our family. Please never stop hoping and praying for Rocco and keep those positive thoughts and positive energy his way. Never lose hope, he is making progress, slowly but surely. Whenever I start to feel down or overwhelmed by everything, I always think back to what one of the nurses told me when my father had to be hospitalized last year. If you remember, Rocco had a horrible reaction to a medication and then ultimately had a small second stroke. I remember feeling so defeated, but her words gave me so much hope and still do to this day. She said, "Look at all of the love he has around him. If anyone is going to beat this, it's going to be him."

#TeamRocco

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Michelle Tweed posted a new update:
over 2 years ago

Update #37

May 16, 2017

Hi Everyone,

These past couple of weeks have been a roller coaster. Rocco's coughing is still pretty bad and is preventing him from finishing his meals. As you can imagine, this is really concerning and upsetting to us. We're still not sure of the cause of this, but it is most likely neurological. Please keep this issue especially in your thoughts and prayers. We desperately want to get Rocco off of the feeding tube.

On the more positive end of things, Rocco has been doing incredibly well and on Wednesday he had his best day ever! Not only was he doing great in physical and occupational therapy, but he was talking so much! Both in speech therapy and conversationally. The best part was that it was at a normal, loud volume and very clearly. Sometimes Rocco will talk, but he will whisper or mumble making it hard to understand him. He was able to identify that Mother's Day is in the month of May and he was completing opposites such as up vs. down, left vs. right. Then as the session progressed he was completing really complex opposites. For example, the therapist said "forwards" and Rocco clearly replied "backwards." The therapist said "love" and he said "hate." Those are extremely difficult, and he answered them with no help and loudly! Another big highlight from this session was when his therapist Trish (pictured on the right) said "Rocco, I'm going to whisper something in your ear that I want you to tell JulieAnne" (JulieAnne is Rocco's favorite therapist, pictured on the left). Then Trish whispered in his ear and then she said, "Ok, Rocco. What are you going to tell JulieAnne?" Then Rocco said "Happy Birthday!" very loud and proud. JulieAnne was thrilled, and then they took this picture to commemorate the moment (Sometimes Rocco doesn't open his eye in therapy, even though he is doing really well. This happened to be a day when he kept his eyes shut)

Rocco is so blessed to have such great therapists at JFK Medical Center. They celebrate his triumphs with us and push through his low points with great optimism and compassion. We don't know what we would do with out them.

On July 30th we will be participating in the JFK Miles for Minds Walk/5K to benefit he JFK Center for Head Injuries. We participated last year as well and it was really a great event full of love, support and hope, all to benefit a great facility that continues to help Rocco progress every day.

Let's make this year even better than last year! If you want to join Team Rocco or learn more about the event, please enter this web address into your browser to sign up: http://5k.jfkmc.org/goto/TeamRocco

Thank you as always for all of your unending love, support, prayers and positive thoughts for Rocco and our family. They are truly working. Never give up and never lose faith.

#TeamRocco

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