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.

Power Moms

In Fortune Magazine this month, there is an article about the 50 most powerful women in business. Reading it makes me feel as small as I feel when I browse the pages of Pottery Barn Kids, and wonder if I've made my children's childhoods meaningless by depriving them of a boat bed with matching everything. How do these women do it, seriously? How are they mommy's and wives and superpowers all in one? How do they get away from their families long enough to make a difference in the world? Who takes care of their kids when they come down with pneumonia? Alex gets pneumonia at least once a winter, and he is, right now, lying in bed after 10 days of coughing out the pneumonia that settled into his right lung. Who would stand with him in the steam shower if I were out being powerful in the world? Who would open the Kleenex to examine the yellow gunk he coughs up between bites of bacon if I were not sitting at the breakfast table? I am in such demand these days that it took me three tries to get my flu shot at Costco. The first two times Alex's school called to tell me he was having a pre-seizure headache and I needed to drop everything and get over there. On the third try, I pretended to be related to the elderly man in front of me, snuck in front of him in line, and snagged his shot before racing off to retrieve one of the children. I could almost hear a sneer from the long flu shot line, "Soccer Moms, you are all the same!" Over the last six years, I have held an internal emotional battle with myself for feeling occasionally dissatisfied with being at home with the kids and not out being something else in the wider world. The other day Izzy said to me, "Really, you worked, Mommy? You really used to work?" Yes, yes I did, once. "What did you DO?" I thought about that one since I didn't really want to lie to the kids, but we don't exactly discuss my previous career. Alex was there too and he was equally as interested. "Mommy used to be Wonder Woman in her younger days, but I gave that all up to be your Mommy." Both kids burst out laughing, proud and completely convinced that I used to carry a golden rope that made everyone tell the truth (if ONLY!). I told them it's our secret, and so it is, and we don't tell anyone else about it. Once in a while they will ask me if I ever did this or that when I was Wonder Woman and of course, I did! The ultimate threat to my children when they misbehave is that I will go back to work and they will have to stay with a nanny. The idea of losing Mommy to the outside working world is simply unimaginable, a nightmare (or nightmirror, as Izzy says). I was feeling particularly argumentative with myself after browsing the Fortune Magazine article and I spent some time looking at the pictures of these women and wondering what it was that made them so powerful. It is hard to read that from a picture. And then last night, as I snuggled next to Alex at bedtime, he suddenly shot up and announced, "Mommy, wake up!" His sudden outburst sent a dozen scenarios racing through my mind. Was he having a seizure, about to vomit, having trouble breathing? "I won!" he shouted. Then I wondered if he had lost his mind. "I won, and you are right, kindergarten is like a game of chess." Then I remembered our conversation from that morning at breakfast. Alex has been very frustrated that his teachers harp on him in the morning to unpack his backpack. He's always the only one not ready for class to begin, because he sits there, bundled up in his mittens and hat, with his enormous backpack sitting in front of him blocking his view of the teacher. He sits and he waits, and he daydreams and eventually, his teachers get after him and he wants to cry. So, I suggested he preempt their admonitions by unpacking before they have a chance to get after him. "Kindergarten is like a game of chess," I explained to our little chess champ. "If you know what moves the other pieces are going to make, you can preempt those moves and go after the king and win." And so he did, and now he wins every morning, and there are no more tears, and in fact he has begun to apply the chess analogy to everyday life. I'm sure Sheryl Sandberg has put a few kings in check mate. I wonder how many she snagged from the kitchen table, in her pajamas. Well, she's a mom, so maybe she's snagged a few at breakfast, too.

Dancing

Today I read a story in the New Yorker about a woman who lost her baby at 19 weeks gestation. He was born on the bathroom floor of a hotel in Mongolia. The mother, a writer who was traveling on assignment, held him briefly, alive and wriggling, and hugged him as he slipped away in her arms. For one magical moment, she was a mother. This short life in her arms changed her, forever. She fell apart, her marriage crumbled, and her grief filled the quiet places of her solitude. Grief, like death, is suffered alone. Before I had children, I'm sure I would have felt very sorry for the mother. I would have said, as I always used to say about these kinds of things, "Well, it wasn't meant to be..." But so much has changed since I slipped my index finger into the palm of Alex's hand, just long enough to tell him, "Mommy's here, Alex, everything's going to be okay," before they swept him off, already intubated, into the dungeon of intensive care. I no longer believe that things were meant or not meant to be. I believe that there are times when the cosmos is off balance and things are not as they should have been. As I read the story, I could see where the tragedy was leading, and I kept thinking to myself, "No, no this isn't going to happen. The story is NOT going to end badly. There's going to be a happy ending. There must be." Watching the tragedy unfold was almost too much to read. In fact, I skipped parts. It was like watching the movie I replay in my head of the day I set out for a walk in the woods with our horse and the dogs. I want to skip parts, to believe it will end differently, to hope that if I just close the magazine, I won't have to get to the end, and I will never have to know what really happens. I won't have to feel the tug of the horse's lead line as he rears, or rethink the logic behind my letting go of the line so as not to be pulled to the ground, or listen to the sound of the hoof as it embeds itself into flesh and fluid, or experience again the instant panic when I knew our lives had changed forever. If I just close the magazine, the end will never come. I was reading the New Yorker piece today, sitting next to Izzy, who was watching the Nutcracker Ballet for the 100th time on the iPad. She is obsessed with her tiny mouse part which she will dance in her first performance this December. She dreams big, and her immense talent makes the dream seem less like a dream and more like a movie's opening scenes. She prances around the house with grace, leaps into my arms lightly, then lands and twirls. Alex joins in and he twirls and he leaps and he lands like a foal in my arms. His arms and legs flail and his dead weight strains my lower back, and I tell him he's awesome. I need to steady him for a few moments before I send him on his way around our kitchen island. If Alex had been born healthy, I would not be home with the kids in the late afternoons, to watch cotton candy sunsets settle over the marsh behind our house and dance the the dance of the Sugar Plum Fairies. No one chooses tragedy. But not all the bad is always bad, or only bad. I wonder if the writer of the New Yorker piece wrote with such depth before her tragedy. I wonder if I would be as in love with being my children's Mommy if we hadn't all suffered so much from the hoof of a horse, or the poor judgement of the Mommy. There's no part of my past more interesting or important than these afternoons, catching Alex and Izzy as they leap into my arms and twirl away and come back again. I can still feel them in my arms when I fall asleep.