Tuesday, November 15, 2016

Epilepsy Awareness Month: Follow-up Interview with Connor Doran

I am so happy I was able to get a follow-up interview with Connor. He first came to my attention (and millions of others) when he made it to the top 12 of America’s Got Talent! His indoor kite-flying talents and endurance in fighting his epilepsy and dealing with being bullied made all of us admire and root for this kid.

Connor Doran
Indoor Kite Flying
Imagine my delight when I went out on a limb and asked him to participate in the 2012 Epilepsy Awareness Month interviews and he said yes! I was honored and impressed that the fame hadn’t gone to his head and he was willing to talk to some lady from Sacramento with a blog in order to help spread epilepsy awareness.

Connor is as busy as ever but took time to tell me what he has been up to the last four years and to share his life with epilepsy.

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

My name is Connor Doran and I have Epilepsy. I have been seizure free for the past 8 years; however, my girlfriend has seizures on a weekly basis so it is very scary for me to watch her have a seizure. I don’t have a lot of experience taking care of someone else when they are having a seizure but I am beginning to learn how to deal with someone else when they have seizures. I hope to get my first aid card.

Robert’s Sister: What is the most significant change in your life since our last interview?

Since the last time we talked I have moved to Seattle, Washington and I graduated from South Puget Sound Community College with my Associate of Arts degree. I hope to attend the University of Puget Sound in order to get my BA in Sociology so I can help other people who struggle with the same problems and are facing the same kind of discrimination that have happened to me. I have also met the love of my life who I hope to marry.

Connor and the love of his life
Robert’s Sister: Has the treatment changed for you or your loved one?

Treatment has not changed for me. My girlfriend who has Epilepsy as well just got a seizure dog back in June and we are hoping that her seizure dog will help keep her from falling and hurting herself whenever she has a seizure.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

My cognitive, intellectual and emotional abilities have not changed since we last talked. I have built up a lot more muscle mass because I work out a lot. I say this because you can be the strongest person or smartest person in the world no matter who you are.

Robert’s Sister: What caregiving help do you use?

I am lucky enough not to need any caregiving help. I have a Smartwatch that detects if I am going to have a seizure and lets my family and friends know where I am if I have a seizure. The Smartwatch allows me to be very independent.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?

Living with Epilepsy has stayed the same for me. It has not gotten worse and it has not gotten better. All I know is that it has given me obstacles to achieve what I want to achieve in life but that doesn’t stop me from achieving my goals and dreams and starting a life that I want. Remember you may have Epilepsy but Epilepsy doesn’t have you. 

Robert’s Sister: What has been your favorite moment these last four years? 

My favorite moment was when I graduated from college back in June. Because it gave me confidence that if I can graduate college with Epilepsy induced Anxiety than I can do whatever I want in life regardless of Epilepsy. 

Robert’s Sister: What do you see for yourself in the next four years?

My dream is for my girlfriend to move Seattle with me so we can get married and spend the rest of our lives at a luxurious house right on the Puget Sound and live happily ever after.

Robert’s Sister: Is there anything else you want to say?

Just remember, you may have Epilepsy but Epilepsy does not have you. If you can dream it you can do it.

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.

My email is connordorankite@gmail.com and my website is http://connordoran.com/.

Oh this update makes me so happy! Congratulations, Connor, on graduating with your AA and for finding the love of your life! Thank you for sharing how much can be done, even after having been bullied, having epilepsy and overcoming all kinds of obstacles.

You are an inspiration!

My one and only disappointment is that Connor has not yet introduced me to Howie Mandel! J

May all your dreams come true! 

Trish


Sunday, November 13, 2016

Epilepsy Awareness Month: Interview with Mike and Lorraine Kimble

This is not so much an interview as it is sharing conversations I have had with a couple who cared for their profoundly disabled son, Mikie, for 43 years.

I asked Mike and Lorraine to participate in the Epilepsy Awareness Month interviews three years ago but life was as busy as you can imagine it might be caring for an adult who has been disabled since birth. Their son, Mikie, was not only born with epilepsy and was blind and unable to walk or talk but was mentally about six months old. 

Mikie and Socks
Mike, Lorraine and I have kept in touch and followed each other’s stories for years. When Robert had pulmonary problems, Lorraine reached out to give me advice on how to manage the congestion and mucus to keep pneumonia at bay. We’ve shared our love of animals, stories of rescuing them and nursing them back to health or through losing them.

Not too long ago, Mike and I had a respectful discussion about politics and didn’t even try to change each other’s minds and didn’t engage in any name-calling! (Yes, civilized disagreements can happen.)

There have been times Mike and Lorraine have asked for positive thoughts and prayers for their Mikie when he had fallen ill and their friends and family came through in droves. Mike and Lorraine are very spiritual people and the prayers from friends and family, far and wide, provided them with comfort during these difficult times.

They have given Robert their fair share of prayers and positive thoughts as well, when needed which have been most appreciated.

Sadly, Mikie died this past October 9 but the world has become a better place because Mike and Lorraine were generous enough to share him with us. My hope is by sharing him with you I can do Mikie justice and also provide Mike and Lorraine some sense of comfort.

While this epilepsy ending may not be what we wanted it is still another story of resilience, hope and strength.

Before he died, Lorraine shared with me a little bit about Mikie:

Mikie Kimble
“Mikie has more problems than most kids who suffer seizures, though a lot of kids like Mikie have seizures. Mentally he is about 6 months old, but he has been 6 months old for 43 years. He is blind and cannot walk or talk but makes vocal sounds that tell us when he is happy or when something isn't right. We have oxygen and his nebulizer on hand when we need it.

“As for seizures, the meds he is on now keep them at bay. Once in a while we see what we call a “fleeting” one. Sometimes we know and other times we don't. In times past, his seizures were very severe and difficult to control.

“As far as kids like him, he went to a special school for kids like him or even more severely disabled. When he was young we often went out as a family but as he aged it is more difficult because Hubby Mike has to lift him up and out of the wheelchair to the car and then tear down the wheelchair to fit in the car. Mikie is four and a half feet tall and weighs a little over a hundred pounds. We used to have a van but we used it so little because Mikie just doesn’t tolerate sitting up for more than a short time, even making it hard to go for doctor visits.

“The only problem we have when we go out is the stares and looks. We went to our zoo one beautiful day. Mikie loves noise and crowds but these kids followed us everywhere. We could hardly push Mikie in the wheelchair because they would stop walking by us and start walking backward right in front of us and no matter what we said they would not leave. My patience was gone by the time their mother finally caught up with them and told them they were ready to leave.

“I asked her if she had a good time and she replied that she did. I told her, “Well thank you for making sure we didn't. Your kids never saw a special needs child before?” Admittedly, I was nasty and hubby was a little mad at me but at that point I didn't care.

“This is one of the reasons why we don't go out as much. Plus, Mikie cannot sit up as long as he used too either.”

Mike shared some more positive experiences. 

“But there were other times when the stares turned out to not be gawking. Once when we took Mikie with us to the SC State Fair I noticed some teenagers staring at Mikie. They came over and one of them said, “Is he one of Connie’s kids?”  Connie was a mother of another child like Mikie that worked at the school with the kids and also watched many of them in her home after school, Mikie being one of them. While Robin was her special child, Robin had a very normal brother with regular friends and they came to love “Connie’s kids.” The kids at the fair were some of those friends and they recognized Mikie. They stopped just to show their love for special kids like Mikie! Later, while walking down the midway a young man came up and thrust a huge stuffed animal into Mikie’s lap!

“Another time we were on vacation in a far away state and while sitting at a restaurant we saw a women at another table staring in our direction. I was feeding Mikie, giving him a spoonful at a time while taking a few bites from my own plate. The lady came over and told me she also had a special child her child in her family and wanted to know if she could feed Mikie so I could finish my meal!

“And then while watching a Chinese Acrobatic show at “Splendid China” in Orlando, one of the acrobats noticed that Mikie was different and came up to him after the show and gave him a necklace with a beautiful heart dangling from it!”

Situations like these can be such a useful teaching opportunity for parents! I can only hope that Lorraine’s admonishment of the mom hit home and that she later talked to her kids about respecting all people, disabled or not.

Unfortunately, not all people are kind and Mike was very cognizant of this and was a fierce protector of Mikie. For many years, Mike did not share photos of Mikie for fear they would be used to create unkind memes. The photos used here have been shared publicly by Mike and I am happy to share them as well with the belief that people will be kind and not resort to the type of behavior Mike protected his son against for so many years.

Mikie’s dad shared this image and the description that follows.

“I know people wonder what Mikie’s diagnosis was, and they say a picture is worth a thousand words. This image of Mikie’s brain was taken fourteen years before his death.

“The little white dot and line in the middle of the image is his shunt, draining the excess fluid from his brain. The dark areas are basically fluid. The damaged brain that was there is gone.

“It certainly explains why Mikie was having seizures and why he was unable to learn. To look at this image it would be easy to assume that Mikie was a vegetable unable to do anything, but you would be so wrong to make that assumption! It was nothing short of miraculous that he could do the things that he did.”

Example after example showed me just how devoted Lorraine and Mike were as parents.

Lorraine told me that some of Mikie's classmates had only one parent and that the other parent wanted nothing to do with their special needs child. Lorraine said, “We have learned that it takes a team to care for a child. The love for mom and dad are felt through the child. God has blessed us with each other and a very special child.”

Mike shared a story of Mikie at the service for him which further shines a light on this extraordinary family.

“On occasion people would ask if Mikie enjoyed magic, since I enjoyed magic as a hobby and even as a part-time business for over 15 years. The answer was no, because Mikie could not see and he simply could not understand. But, it turned out that Mikie was a bit of an illusionist himself, even before I took a serious interest in the craft.

“After Mikie got out of school when he was 21, he had very extensive back surgery, a spinal fusion with two rods wired into his spine. It greatly improved his quality of life, allowing his organs a little more room and helping him to sit up. Our friends at Grace Covenant Church in Blythewood knew about this and also knew that he was blind. Members would take turns doing nursery duty, and on the day of this incident Ed Sweeten and several of his children were taking their turn, and Mikie was there with them in the nursery.

“At the conclusion of the worship service, several of the Sweeten children came to me exclaiming, “Tell dad that Mikie grinds his teeth!” Well, yes he does, and while that might bother some people, we were so used to it that it was music to our ears; either that or we tuned it out. “Dad says that the rods in Mikie’s back must be making the noise!”

“Mikie did a great Stevie Wonder impersonation, rolling his head side to side, and at the same time, he would grind his backmost molars in unison. Ed thought that it couldn’t be his teeth (as the children insisted) because his teeth were not clinched in the fashion that is usually associated with grinding one’s teeth. What he didn’t know was that it simply was not possible for Mikie to close his front teeth tightly together because of the many years of biting his arm. (That’s another story for another time.)

“So the illusion Mikie was able to pull off was that of creaking bones and metal as he moved his head side to side. And even though his mouth was open, you could not see him grinding those molars. The children were ecstatic that their dad could be so wrong! By the way, Mikie had those molars extracted and the surgeon said that should fix the grinding problem. Not so, he just moved up to grinding the next set!”

And, finally, I’d like to share a portion of Mikie’s obituary to honor this incredible family and the team of friends, family and caregivers who cared for Mikie throughout his life.

“Michael ‘Mikie’ Lee Kimble of Columbia, as he left his fragile body and entered into the presence of our Lord on Sunday morning, October 9, was able to do at least three things he never has done before. He walked, he talked, and he could see. Mikie was born on March 2nd, 1973 to his parents, Michael F. and Lorraine M. Kimble. Though blind and severely disabled and never able to speak, God used Mikie in great ways to call others to himself both in salvation and service. Though his body grew to barely over 100 pounds and he remained an infant for all of his life, as if he had been 6 months old for 43 years, never learning to walk or talk. But he knew how to laugh, and give great hugs and he stayed busy shaking and throwing his toys from his bed so others could serve him by returning them to him. And in doing so, friends and family were serving Jesus, because He said that “what you do for the least of these you do also for me”, and if any child was one of “the least of these” it was Mikie.

Mikie, Mike and Lorraine
Mikie is survived by his loving parents, Mike & Lorraine Kimble, Uncle Thomas (Mary) Kimble, cousins, Sharon Davis, Peggy Davis, Gerald Davis, Joel Kimble, Thomas Kimble Jr., Mary-Cathy Sewert, Tracy Kimble, and Laura Malcolm Bischer. Mikie was preceded in death by his grandparents, Margaret Caudill and Edna and Ivan Montague and his Aunts Barbara Davis and Lela McGuire, and Uncles David Davis and Steven Malcolm. The family expresses their gratitude to the health care workers at Palmetto Health Richland that have aided in Mikie’s care over the years, as well as the multitude of others that have assisted us, especially our friend and neighbor Cheryl Smith.”

The story does not end there.

After Mikie’s death, Mike and Lorraine contacted me as well as many others to see if any of the unused caregiving supplies would be of use to others. They were thinking of others within hours of losing their son.

This selfless couple will forever be in my heart and I hope their many memories of Mikie bring a smile to their heart.

Thank you to Mike and Lorraine for sharing Mikie with us.

Trish

.

Thursday, November 10, 2016

Epilepsy Awareness Month: Follow-up Interview with Teresa Stallone

Teresa participated in our interviews during Epilepsy Awareness Month in November 2012. Teresa impressed me because she not only had to navigate advocating for herself because of her epilepsy, medication issues, insurance problems and severe periodontal disease but because she was also a caregiver to her mom!

Teresa Stallone with her
beautiful smile!
Teresa continues to have a full plate of advocating for herself and her mom but she perseveres. (That seems to be a common characteristic in the people being interviewed.)

Teresa and I have kept in touch over the past few years and even play Words with Friends together. It is a great way to stay in touch and to take a minute from our caregiving duties. Every little bit helps!

Let’s see what life has been like for Teresa since the last interview.

Robert’s Sister: I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

Epilepsy has affected my life in many ways and continues to do so. I do my best not to allow it to interfere as it does not define me. It isn't who I am. Unfortunately, it does interfere with life, especially because it is not completely controlled. 

Seizures affect every area of my life. They affect gainful employment, my formal education, socialization, relationships, appointments, commitments, and participation in certain activities, and most of all, my independence. I cannot drive as a result. Spontaneity is all but gone. Transportation is a great challenge and doesn't seem to be any easier to deal with as the years go by. I find it to be even more frustrating. It also affects the level of my ability as a caregiver.

Robert’s Sister: What is the most significant change in your life since our last interview?

The most significant change is my medical team. I rebuilt it from the top down so to speak after my primary care physician left her practice. I also experienced several life changes and a hospitalization that resulted from heatstroke, which triggered a combination of seizures and an intractable vertigo and migraine attack. 

Despite having to do so, it was time even though it felt scary. I knew I needed a fresh pair of eyes as my treatment became stuck in a rut due to the complexity of my case. Lack of communication between my physicians became the norm. I felt like a ping-pong ball and somehow lost control of the management of it. I had to be the captain of the ship along with my primary care physician and specialists. 

Since the change, there has been a huge difference in my care. My physicians communicate with one another, especially when I request it. With the exception of a couple, they all belong to the same healthcare system so my information is readily available for each to review. I am treated well and acknowledged as the head of my team. I have the final decision as I am the one who chooses the route to take based on their expertise. They do not treat me as if I am a burden to their caseload because I have a complex case. It helps a great deal to trust and know my physicians care about my health through the peaks and valleys. These days I hear, "I am on your side." That is a direct quote from my general neurologist.

Another significant change is I was accepted into a program that helps medically compromised patients who otherwise cannot afford major dental work. After a year of work, all infection was cleared. It is no longer compromising my health or jeopardizing my life. I have teeth now and can smile again!

Robert’s Sister: Has the treatment changed for you?

One of the first things my neurologist did when I first began to see him was increase the dosage of my primary anti-convulsant. Desired results were not achieved so another medication was added and he referred me to an epileptologist. I was taken off of medication for another health issue as it was learned that it was causing me to have more seizures. From that point on, it was decided that one or both must clear me when adding certain medications, having procedures that require sedation or anesthesia, and partaking in high-risk activities. I am provided with more guidance.

I will be having an inpatient EEG soon to learn more about what is going on as I have a working diagnosis of intractable seizures. My neurologists want to learn which part of my brain the seizures originate from so they can provide me with better treatment. 

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

I've experienced more memory loss, issues with retention, comprehension, and focus, in addition to weight gain, muscle cramps, and irritability. My level of frustration has increased as well. The long-term effects of seizures and medication side effects have taken their toll. 

Robert’s Sister: What caregiving help do you use?

My friends, including online and a couple of family members lend emotional support. When in my presence during a seizure, they do take charge and provide seizure first-aid and care. My friends and neighbors drive me to doctor appointments and to run errands when they are able to do so. If I have seized and cannot do it on my own, I have a friend who will go to the store for me when available. It is all very helpful. I also see a neuropsychologist who helps me with my coping and cognitive skills, in addition to the side effects of living with seizures. Otherwise, I'm the caregiver in my household. 

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?

In some ways, it has improved as a result of treatment, behavioral, and lifestyle changes. Even though my seizures are still not controlled, I am having less of them now than I did four years ago. On the other hand, it has remained the same because desired seizure control or management has yet to be achieved. 

Robert’s Sister: What has been your favorite moment these last four years?  

My favorite moment has been completing major dental work! As a bonus, I finally found a very kind, understanding dentist who does phenomenal work! 

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I see my health stabilizing to a manageable level. I also see myself turning my life experience, passions, and advocacy skills into a substantially gainful career as a result. In addition, I see myself having the time to dedicate to writing whether it be starting a blog (finally!) or a book. 

Robert’s Sister: Is there anything else you want to say?

Make it a habit to let people and places, such as dentist's office know that there may be times last minute cancellations will occur due to seizures. Ask if there if appointments can be scheduled around that chance happening to minimize inconvenience for all involved. Stress the fact that you have no control over a seizure occurring or how you may be afterwards. Recovering from a seizure is priority. 

I would like to stress the importance of educating those around you about your seizure type, patterns, and any set protocols you may have so they know what to do in the event one occurs while in their presence. This also includes healthcare professionals as not all of them are trained in seizure first-aid. I've learned this by experience. 

I also encourage people to educate themselves and ask questions. It helps in order to support the person in their lives who experiences seizures, in addition to dispelling many myths surrounding epilepsy. Sometimes, we forget to inform you. Remember, there are general guidelines and similarities; however, every person experiences something different. Do not fear! We know seizures look scary and are difficult to witness. Imagine being the person going through it! Keep in mind that holding awareness is key in helping and supporting your loved one. 

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.  

My website as a doTERRA Wellness Advocate is https://www.mydoterra.com/tmstallone. My photography website is http://www.artistrising.com/galleries/tespics.

I support the following organizations and support sites: 

Epilepsy Foundation of Chicago: http://epilepsychicago.org/
The Epilepsy Network: http://theepilepsynetwork.com/
Caregiving.com: http://www.caregiving.com/


Many thanks to Teresa for her time! What I love about this follow-up interview is the hope that shines through in Teresa’s answers.

I am happy to hear she found such a great dentist during these last four years. It is amazing how being comfortable enough to smile again makes such a difference.

I am also thrilled to hear about the positive changes happening with Teresa’s healthcare team. Every patient (and caregiver) in the healthcare system should be recognized as the captain of their ship and to be told “I am on your team.”

We should settle for nothing less.

(Oh, by the way, it’s your turn Teresa.) J

Trish

Wednesday, November 9, 2016

Epilepsy Awareness Month: Follow-up Interview with Christy Shake

Christy is one of those people who when told “no” will find a way anyway with or without help. If her son, Calvin, needs something to improve his care and his health, she will find a way to get it for him. She will do her own research, organize fundraisers and is absolutely relentless and tireless in her advocacy.

Christy Shake with her son, Calvin
I know Christy through her blog, Calvin’s Story, from our previous interview in 2012 as well as other social media and occasional email exchanges and her resolve to help her son is evident through everything.

I also know that just because we are caregivers, life does not stop. Our routine cannot stop because an election does not go our way. We do not get a pass on other crap that might be thrown our way just because we are caring for someone. Christy is no different and, as just one example of how cruel the Universe can be, Christy lost her mom last year to Alzheimer’s.

Through everything, I know Christy is tough and, oh (!) so smart, open and honest about the struggles of caring for a boy with significant health issues.

Christy was kind enough to talk with me again and to share how life with epilepsy has changed for her family over the last four years.

Robert’s Sister:   I interviewed you in November 2012 and I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

In February of 2014, I began treating my twelve-year-old son Calvin’s epilepsy with a homemade THCA cannabis oil, a boy who, in the ten years since his diagnosis, had failed as many antiepileptic drugs. At the time we added the cannabis oil to his regimen, he was taking high doses of two pharmaceutical drugs, Keppra and Onfi, a benzodiazepine. We decided to wean the benzodiazepine because Calvin’s behavior had become intolerable; he screamed and flailed much of the time and didn’t sleep well at all. It was clear to us it was due to the drugs.

Robert’s Sister: What is the most significant change in your life since our last interview?

The most significant change is the virtual disappearance of daytime tonic-clonic seizures. Since adding THCA cannabis oil to Calvin’s regimen two-and-a-half years ago, he has had only two daytime grand mal seizures. The initiation of a four p.m. dose of oil has eliminated his frequent early evening grand mal seizures, an improvement which has greatly reduced the anxiety I feel around his safety. Prior to adding that dose, Calvin used to have seizures every week or two in the bath or at dinner. As a result, I was constantly looking over my shoulder fearing the next seizure. Now, his grand mal seizures are confined to the predawn hours when he is nearby and safe in his bed.

Robert’s Sister: Has the treatment changed for Calvin?

We have been weaning Calvin off of his benzodiazepine since starting the cannabis oil regimen. Over the past two-and-a-half years we have taken him from 35 mgs/day down to 3 mgs/day with just a fraction of an uptick in grand mal seizures plus a smattering of partial seizures each month. We have also taken him off of Miralax, Banzel and several other topical medications used to treat a persistent chin rash due to the excessive drooling benzodiazepine can cause. In lieu of Miralax, we have been giving Calvin probiotics which have helped boost his immune system while improving the flora in his gut.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

Since the advent of the cannabis oil, in concert with the reduction of the benzo, Calvin is far calmer. He will now tolerate sitting in our laps. He sleeps far sounder and longer. For the most part, he seems to have less trouble with painful gas. His bouts of hyperactivity are few and far between. He has become slightly better at expressing his needs through gesture (he is non-verbal). The past year, however, he has become more stubborn in ways, but that could be attributed to the benzodiazepine withdrawal or the slight increase in seizure activity.

Robert’s Sister: What caregiving help do you use?

We used to have a nurse assist us up to eighteen hours per week but she moved out of country and we have not been able to secure a replacement. We don’t live near family and none of our friends are truly capable of taking care of a boy as complex and needy as Calvin. Sometimes we use his former ed tech to watch him if there is a function we need to attend. Mostly, though, I take care of Calvin when he is not in school. My husband works most days, but he also does all the cooking, freeing me up to take care of Calvin, who is hands-on since his balance, vision and cognition are so poor.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

In many ways life has improved but in others it has not. Calvin’s improved behavior, since drastically reducing his benzodiazepine and adding cannabis oil, has eased much of the distress and frustration we used to feel. The uptick in partial seizures, however, has taken its toll in that Calvin is missing a lot of school as a result, which means keeping him home and caring for him mostly by myself. Our boy needs assistance around the clock and can never be left unattended since his balance is so poor that he is liable to get hurt.

I definitely feel the cumulative psychological, emotional and physical effects of caring for a significantly disabled child with a chronic illness.

Robert’s Sister: What has been your favorite moment these last four years? 

I can’t isolate a favorite moment, but Calvin has reached a few milestones in the past four years that have cheered me. He has learned to sign four words: hug, more, eat and all done. We gladly retired his safety harness two years ago since his walking and balance improved so much. He goes shopping with me and seems happier riding in the car. He is calm enough now to sit on our laps again while we read him his favorite book. We see fleeting glimpses of a more “normal” boy.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I wish I could say that I foresee a life without seizures and drugs, but my sense is that Calvin will likely continue to have seizures since he has failed nine antiepileptic medications, and the cannabis, so far, hasn’t eradicated his seizures either. Having said that, I do believe he will continue to make strides in his development, and I hope that this stubborn streak will soon subside.

Robert’s Sister:  Is there anything else you want to say?

I invite you to visit my blog at http://www.calvinsstory.com.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

Please donate to CURE Epilepsy in honor of Calvin at: http://www.calvinscure.com.

I am extremely grateful to Christy for taking the time to update us on her story of caring for Calvin. She is a remarkable mom and I implore you to read her blog. It is a testament to the resilience and strength of a mom caring for a child under extraordinarily difficult circumstances. It helps that Christy is a gifted writer who shares her story in rich detail and often-times gut-wrenching anguish.

Many thanks and heartfelt hugs to Christy.

Trish