Creating Happiness

The other day I made an accidental purchase. While in the book store, I picked up Gretchen Rubin's The Happiness Project and skimmed through it. At first glance, it seemed self-indulgent (on the author's part) and long. I wasn't really interested in reading about someone's 12 month project to find happiness. I really just wanted a book that might give me a few basic steps to appreciating every day. It has been a hard winter. But somehow the book found its way into my pile of other books, and when I got home and discovered it next to my bed, I figured I might as well read it. For anyone looking to improve a life, take it from fine to good, from seasonally affected to "Bring it on, rain..." I recommend it. For parents, I really, really recommend it. For parents of sick children, it is a must. In fact, it is going to be part of the book list for The Baby Alex Foundation's Alex's Libraries which we are setting up in hospitals in CT this year. The book is filled with some shocking statistics (A 30% increase in one spouse's happiness boosts the other spouse's happiness, while a drop in one spouse's happiness drags the other down.), great insights (when I made the effort to reach out for them, I found that the ruby slippers had been on my feet all along), inspiring quotes (the days are long, but the years are short), and a plan for focusing on one aspect of happiness each month (January: Boost Energy; February: Remember Love...). The author, Gretchen, is looking to make her good life happier, maybe because of middle life malaise, or maybe just as the next challenge to an otherwise incredibly accomplished life. In our household these days, we are all working on happiness. Alex reminds me often to smile more. Sometimes he gives me a hug because I look unhappy at breakfast. Izzy tells me point blank that I do not demonstrate enough happiness when I spend the afternoons with her. They both complain about Erik being tired all the time (the poor guy). I read the book in a few days and immediately set to work to extract what might work for us. Every family is different, and every family has different needs when it comes to focusing on happiness. What stood out for me is the idea that you simply can't afford to wait to be happy. No matter what the circumstances, to truly appreciate every day, you need to work a little, and honestly, life is way too short to wait for the perfect moment to find happiness. Once you work a little, you find the happiness you desire, and realize it was there all the time. After a while, it takes less work. For me, it is simply a matter of smiling more often, so that the kids see what I feel: happiness at being with them. There is no place I would rather be. I didn't used to smile while making bacon at 5:30am, but now I do. We are all happier.

Eat Fat

Although I have written many times about the importance of fat in our diets, I am going to write about it again. Today on NPR, I heard a broadcast that lambasted the old recommendation of a high carb, low fat diet which my generation was raised on. According to new studies, this diet is linked to a massive increase in the rate of obesity and diabetes, Alzheimer's and ADHD, and any number of other epidemics. I am in contact with about a dozen people every month who have children with behavior issues, sleep issues, epilepsy, low energy levels, concentration problems, and other issues which, in my opinion, are caused by a poor diet. Too much sugar, too many carbs, and not enough fat are at the root of it all. And yet, when I suggest people make the change to a high fat, low sugar/carb diet, they step back and lower their eyes. I tell them that all it takes is one afternoon. For one afternoon, they need to take the time to throw away all the high sugar and high carb items in their house, and then go shopping for the healthy replacements. I also suggest, as our nutritionist did to me, that they give their children teaspoons of oils at breakfast and dinner. Alex and Izzy get fish oil in the morning and other oils in the evening. Alex simply cannot function without them. If we go a couple of days without our oil supplement, he gets low on his fat intake and he gets irritable, tired, has trouble sleeping and becomes antsy. Fat is the brain's friend, and therefore your friend. So, eat fat, you will sleep better and so will your children. In the seven months since we drastically changed Alex's diet, we have had our lives returned to us. I have been able to train, to work with The Baby Alex Foundation on fundraisers and other development projects. I can think clearly, and my stress level is significantly decreased. My life's focus has shifted away from a sick child and toward a more functional everyday life. The only hitch to all of this is when Alex gets off his diet, we have a few days of scrambling around to make it right...that's hard and it reminds me that we live with a brain injury. But it also reminds me of how far we have come.

New Website Up and Running

Our new Baby Alex Foundation website is up and running. Still at www.babyalexfoundation.com, this site has been modified and updated to reflect our mission to support pediatric brain injury patients and families. We have added two pages on various therapies Alex has used with much success, as well as a sampler of our new initiative called Alex's Library. This summer, we plan to complete three of these libraries outside the CT Children's Medical Center's 2 NICU's and 1 PICU. We have identified the rooms and will need to begin painting and furnishing, as well as stocking these rooms with over 3 dozen books that have supported our efforts as parents of a preemie, a child with brain damage, epilepsy and cerebral palsy, as well as our determination to find meaning and inspiration from our experiences. Decorated in Foundation colors-gray, black and orange-these rooms will be furnished with deliciously comfy sofas, chairs and rocking chairs. The rooms are intended to serve as a quiet place for families to sit and think, read and contemplate, and most importantly, find hope while their child is in the hospital. We hope to have children's hand prints all over the walls with inspirational quotes and photos. Once Alex finishes his own book about his childhood, we plan to make these books available to take home.

The Run Baby Run Baby Ultra

The Run Baby Run Baby Ultra is officially on the ultra calendar. Check it out at www.runbabyrunbabyultra.com. And today, we open for registration. Although this is a baby ultra (25+ miles), we may aspire to increase the distance in the coming years. For all the runners out there, please join us on August 9, 2014 for our inaugural race. The course starts and ends at the Sanbornville, NH Poor People's Pub, travels through the quaint town of Sanbornville, then turns up and over Moose Mountain on dirt roads and trails, back down into the bustling town of Wolfboro, joins up with the Cotton Valley Rail Trail, then cuts through some rugged trails and dirt roads to return back to Sanbornville. I've run the course so many times I can't count, and I love it. I hope our runners will feel the same. This is a fully self-supported race, and all runners must carry their own water/food. There will be just one resupply stop at the half way point in Wolfboro. In addition to a $50 entry, there is a $250 fundraising minimum. Finishers awards to all, and the top three fundraisers will win a grand prize, plus race t-shirts, hats and giveaways from Poor People's Pub. All funds raised will go toward funding our research grants and patient and family support projects.

Grain Brain, by David Perlmutter

Whether you have a child with neurological complications or not, you should read Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar-Your Brain's Silent Killers by David Perlmutter, MD. I might not be such a devoted believer in the evil of sugar and carbs if I didn't see the immediate effect they have on Alex. We know Alex has had too much sugar, even natural sugar, when within 20 minutes of consuming it, he has a behavior change. Sometimes that behavior change is hard to reverse. A year ago, before we understood that sugar and carbs are the triggers to his epilepsy, that behavior change triggered by sugar would be the start of a 24-72 hour spiral into a seizure. With the exception of a possible minor seizure while violently vomiting with the stomach bug, Alex has been seizure free for 5 1/2 months. Now that we understand what is going on, when we notice a behavior change, usually set off by diet or illness or lack of sleep, we have been able to course correct through high fats (fish oils, olive oils, avocado oils, coconut oils, butter, eggs) and then sleep. So, we are believers in the benefits of a low sugar, low carb diet. But, I never realized the extent to which sugar and carbs damage the brain. The root of much of our most debilitating diseases is inflammation. Although inflammation is the body's natural response to injury, chronic inflammation leads to problems ranging from cancer to Alzheimer's. In Grain Brain, Dr. Perlmutter walks us through the process whereby sugars and grains (with gluten at the center of it all) contribute to chronic inflammation and ultimately to brain diseases, diabetes, and other neurological problems. According to Dr. Perlmutter, many of our modern day ailments--ADHD, chronic headaches, epilepsy, diabetes, cancer, Alzheimer's, gluten sensitivities, obesity--can be prevented or severely reduced by a change in diet with a decrease in sugars and carbs and an increase in fats. I went on my first long run of the training season yesterday, and I truly believe that my energy level remained strong and constant throughout the run on account of my change in diet. I'm sure by now my body has retrained itself to quickly access fat stores, since I'm not feeding it with carbs and sugars the way I used to. So I was able to cruise along for 3 hours without feeling tired or depleted. I used to bring along all kinds of fuel for my runs, but now I travel lightly. I have all the fuel I need stored in my fat. We have seen a dramatic increase in Alex's endurance as well. Until we changed his diet, Alex's day ended around 1pm. He could not stay until the end of the school day or even dream of an activity in the afternoon. But in the course of a few months, he has extended his day while remaining in good spirits and with lots of energy and focus. He has a full day of school, then goes off to a sport practice everyday after school, and two days a week he has karate before school even begins. Diet...it's amazing, the key to almost everything.

The Incredible Magical Egg

Through much trial and error, I have discovered the incredible, magical power of the egg. An egg-a simple gooey substance of stuff inside a hard outer shell-is our brain elixir. Before we understood that Alex was having constant seizure activity, and before we put him on seizure medicine to help control that activity, he would have meltdowns that lasted for hours. I was pulling out my hair, trying every behavioral tactic I could find to help him have some self-control. But he would repeat to me, "Mommy, make it stop. Make my brain stop!" These were the meltdowns that led to my insistence on an EEG to understand what was going on in that little brain. But before we discovered that Alex was having constant seizures, and the noise in his brain was making it impossible to function, I tried to solve for the meltdowns. I began to look at his meltdowns the way I look at my own emotional collapses during an ultra run. I always tell newbies ultra runners, as soon as you start having negative thoughts during your ultra runs, it's time to eat. So, when Alex started melting down, I started to feed him. Initially I chose popped chips and other easy to eat and digest foods. But those were all wrong. They made the problem worse. Lots of carbs and sugars, feeding the craziness in his brain. So, I looked around to see what we had that was high in fat. The only thing I could think of was an egg, scrambled in butter, with lots of salt to make it more yummy, and a glass of high fat milk or cream. The hard part was getting him to eat it while he was crying hysterically. But once he got one bite in, he wanted another and another and by the time he finished his egg, he had stopped crying. In fact, he returned to our old Alex. It was as though I had given him a sedative, without the negative side effects. Once he started seizure medicine, he no longer experienced these crazy meltdowns, but he still got upset and cranky over small things. My solution has become to feed him an egg in butter, every day. If he eats eggs in the morning, he is pretty even keeled all day, and if he is off his keel, then I feed him one as a snack in the afternoon. I mentioned this fact to our neurologist the other day and he said, yes, he has heard that eggs can work like this for the brain. But why? (and um, why didn't anyone mention this to me before?...) I suspect the egg has a perfect mixture of fat and protein, with Omega-3 fatty acids and other vitamins and minerals that make it the most amazing, magical brain food around. I have become the biggest proponent of a low sugar high fat diet, and truly believe in the magic of the egg. If you can get hold of free range, grass fed chicken eggs, the cholesterol is significantly lower.

The Mid-Year Grant Review

Every fall I meet with our grant recipients, either in person in their labs or via skype, to speak with them about their progress on research The Baby Alex Foundation is funding. We have given over $250,000 in seed grants since 2009, and the work we have funded is pretty incredible. Although brain injuries can be devastating, the field of pediatric brain injury research is one of the fields where research is making significant progress. If Alex had been born today, his life would have taken a different course. In just these past six years since Alex was born, his shunt has become outdated. Newer shunts on the market today have many fewer risks over a lifetime. Rather than having to undergo countless MRI's and CT scans with sedation, he would have had a simple helmet attached to his head and a peaceful room to rest in while the machine captured images. If he had been entered into one of the clinical trials underway, he might have been given one of the new drugs on the market which may have had the ability to arrest brain injury following an insult, and perhaps his cerebral palsy would have been milder. The research we fund does not help Alex today. That's okay, because someone somewhere conducted research on countless topics which helped Alex survive and thrive in ways he would not have if he had been born 12 years ago, or 50 years ago. So, when we meet the researchers who have spent their lives trying to improve the future for children, we are inspired and profoundly proud to be a part of it all. Both of the 2013 research projects are looking at ways that the brain reacts to insults, such as a lack of oxygen or an infection, and how early interventions might arrest injury to brain cells. In just six months, they have presented findings to national conferences and have written papers to be published in medical journals. And both plan to apply for larger grants from the NIH for further research and possible clinical trials. As we head into the winter and make plans for our next year of fundraising, we find renewed strength in our mission and efforts from following the progress of the research we fund. Alex sat in on one of the skype meetings. As much as the researchers inspire us, Alex inspires them. He brings a human element to the lab work. He serves as a model for what we all want for a child with brain damage, or any child for that matter--a happy, inquisitive kid. Our team at the Foundation is growing, and our reach is increasing and at these times, I feel we are improving the world.