Thursday, December 19, 2013
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.
Wednesday, December 18, 2013
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.
Friday, November 15, 2013
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.
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.
Friday, August 30, 2013
As the start of school approached this week, I was in a panic. Alex's episodes of pre-seizure headaches have increased to at least once a week and if something isn't done about them, they turn into seizures. I know that Alex gets tired with noise and chaos, and this often brings on these headaches. So, how was he possibly going to handle school? After many discussions with his school principal, nurse, social worker and original kindergarten teacher, I realized we needed a second set of eyes in the classroom. How was one teacher going to manage 18 other kindergarteners and recognize that Alex wasn't well, soon enough to get him to the nurse safely? The night before school, I had a final conversation with his principal who has been incredibly understanding, and he changed Alex's room assignment to a smaller, special ed inclusion room that has a second teacher. This second teacher has had experience with children with CP and epilepsy. We finally met both teachers a few minutes before school started, and decided this was a much better fit. I think we are all thankful of the joint effort to make these changes, because later that day, on the first afternoon of class, Alex started feeling sick. The special ed teacher recognized right off that he needed to go to the nurse. In the nurse's office, he felt better, but when I picked him up, I knew he wasn't doing well. Within 5 minutes of being in the car, he had a seizure. By sending Alex to the quiet and cool office of the nurse, she likely saved Alex from having a seizure right there in the classroom. She bought him some time. I was able to do the pressure point massage and within 8 minutes, the seizure passed. No Valium. We learned many lessons from this first day of school, one of which is that Alex can only handle a half day of school for the immediate future. Maybe he will work up to a full day by the end of the year, but he might not. He will have a 504 plan to state what accommodations he gets and we will revise it as necessary. Mommy School this year is simplified, although it is actually much more academically focused. We cover math, language, reading, writing, art, and many fine and gross motor skills through three activities: IXL (online) math (Khan Academy supplemental when necessary); reading with a world geography focus (such as the amazing Geronimo Stilton series) and art (through an in-depth study of the artists). The schedule looks like this: 7:30 20 minutes of reading with Mommy, (Geronimo Stilton and the Mystery in Venice), which inspires 20 minutes of artwork depicting something that the story inspired, and then we get ready to leave for school. At 1:30, with everyone back from school, we work on IXL math for an hour (30 mins each child). The child not doing IXL is working on an art project. We decided to study Van Gogh this fall. We did Matisse last spring and Jackson Pollock over the summer. But the kids think it's amazing that Van Gogh cut off his own ear, and Izzy is in love with Sunflowers, so the kids quickly decided on Van Gogh. I feel like I have been pulling all nighters at exam time, except that I am 20 years older and don't get to catch up on sleep when the exams are over, but I am hopeful that things are on track for a good year and those all nighters will have been worth it.
Tuesday, August 13, 2013
Have you ever documented what your children eat, for even one day? You might be shocked to learn that they are consuming WAY more starch and sugar than you imagined. In my search for non-medical means of controlling Alex's seizures, I stumbled (why I had to stumble, I am not sure...we should have been driven in this direction when his seizures first started...) upon The Johns Hopkins Epilepsy Center and their Ketogenic Diet. The Ketogenic Diet allows for just 10 grams of carbs in a child's daily diet. It is extremely strict and difficult to maintain for some families but it has incredible results in limiting or completely stopping seizures in children with difficult to control epilepsy. In the recent edition of Ketogenic Diets: Treatments for Epilepsy and Other Disorders, there is also a review of the Modified Atkins Diet (MOD) for epilepsy. We decided to start with the MOD, because we are able to do it without a hospital stay and we wanted to see if we got results without such a strict diet. We aim for 50 grams carbs/day. These days, a lot of people are on these kinds of diets, and mostly people get great results, so we were all for making a change. The first step was to clean out the cupboards (GOODBYE CHEERIOS)and stock up on healthy foods. The second step was to come up with some healthy recipes, enter them into www.myfitnesspass.com to see how they stack up on the health scale. The last step was to sit down as a family and discuss our new diet. We are all committed to eating a better diet, eliminating sugar and starchy foods, and to support Alex by not indulging (as in having an ice cream cone) in front of him. We committed. I feel as though I need to cook a lot more than I used to, and I need to think creatively about how to get my kids to increase their veggie intake, but the results have been awesome. We ALL feel better. Alex's personality is much more stable, and he does not have sugar lows. The one day this summer that he consumed white sugar in the form of candy given to him while we were out and about, he came home, had a meltdown, went to bed, woke up in the night repeatedly, woke up looking pale, and had a seizure by lunchtime. Yuck, white sugar! Fortunately, Alex is totally on board with our new diet and he helps me count carbs every meal. He likes to know his total carb intake before bed. He often tells people wise things like, "No thank you, I don't want any s'mores. I can't eat that much sugar." After this last sugar-induced seizure, he gets how dangerous white sugar is, and I feel pretty confident that he will turn candy down in the future if offered while I am not around. Getting him involved has been crucial. And now that we are getting used to our new diet, we don't miss the sweet stuff. Even yogurt seems too sweet for us, and sugary cereals are just disgusting. We should have made this change a long time ago. As a runner, I thought I needed my pasta and oatmeal bread...but my 30 mile runs haven't been affected in any negative way.
Our little seizure dog, Snowy, only 6 months old and still learning basic obedience (and only recently house broken) is a natural seizure detect dog. That means that when Alex is not feeling well, even though he may look completely fine, she smells a change in his body, and she lets us know. Mostly, she sniffs him feverishly from head to toe. Interestingly, she sniffs mostly around his neck and head, and jumps around. Potter, now 18 months old and not adopted as a seizure dog, is also a natural seizure detect dog, although we have no intention of training him to become a response dog. Now we have a double alarm system. Alex has had one seizure this summer. He has also had one pre-seizure headache, and we were able to act to prevent that from turning into a seizure. HOURS before both incidences, the dogs predicted them. For this last one, not only did Potter sniff him all over, Potter gave me his "I'm alarmed!" intense dog look with ears up, which means something is very wrong. So, now we grapple with the question of what to do when we know Alex isn't well, according to our natural alarm system. Sending him to his usual activities is not an option, as within a few hours he is suffering a migraine which then becomes a seizure. We will get that figured out this fall. For now, we pay a lot of attention to the dogs. This morning, like most mornings, neither dog gave Alex any attention. They ate their breakfast and played and when they got tired, Snowy lay down at Alex's feet and Potter got into his bed. How do you find a seizure detect dog? They are born, not bred. They need to have a good disposition and an excellent nose. Both of our dogs have hound in them--Snowy is part Bloodhound and Potter is part Coonhound. Probably getting them as puppies helped, because they have grown up with our kids and know what we smell like normally, so that if there is a change in smell, they detect it. They also sleep with our kids, usually on their dog beds, but at times, right up there on our kids' pillows. When Alex has a seizure, we put Snowy next to him and she stays there until he is awake and well again. A good dog also has a good owner who pays attention everyday. I know what normal good morning sniffing looks like, and now I know what an alarm looks like. I keep track of it all in Alex's seizure journal. Alex knows what it looks like now too. Even he recognized yesterday that Potter and Snowy were telling him he was sick. He looked at me and said, "Well, Mom, it looks like the dogs think I don't feel well this morning." When he work up from his migraine, he said, "So, I guess you need to just ask the dogs, Mom, if you want to know how I'm feeling." Seizure dogs are not just for the patient, they are for the whole family. I don't know if they will predict Alex's seizures 100% of the time, but I know if they think something is wrong, I need to take it seriously. They help me relax with my morning coffee, and give me plenty of time to make a plan for Alex.
Thursday, July 11, 2013
Poor little Alex wore his left leg cast for two weeks, and although it got wet, twice, and had sand and wood chips floating around inside by the time we got it off, he was a trooper about wearing it. The results were significant. His left foot had begun to turn inward so severely that it disabled his run. His left foot was hitting his right leg and even walking was made more difficult. The cast turned that around. He walks and runs well now, better than ever before. And that is after just 2 weeks with the cast. He now has a very stiff day brace and another night brace. We hope these will keep his muscles stretched out and growing as he grows. He grew an inch in 6 weeks, which may have been at the root of the overwhelming change in his left leg movement. With CP, muscles stay tight, and often don't grow at the same rate as the rest of the body. Wearing the cast fatigued his problematic muscles, stretched them and allowed the other muscles to gain strength. It was a plus all around.
Monday, June 24, 2013
Last week, we made the tough decision to cast Alex's bad leg. Due to his growth, and possibly his seizures, Alex's left leg has gotten much worse. Last week, his leg had turned so far inward that it was striking his right leg with every step. Alex really could not run anymore. We did a gait analysis through CT Children's Medical Center and it showed that there is one very misbehaved muscle, quite deep and strong, that is not growing as he grows. It is tight, and as is the case with CP, does not relax when he moves. If we leave it as it is, he will lose his ability to walk and run with ease. It simply won't grow as he grows. So, we cast it, and once that cast comes off, he will spend day and night in a very stiff brace. We are hoping to avoid surgery down the road to lengthen the muscle. The poor kid is hot and tired, but he never complains. He runs on his cast as though it isn't there. On the way out of the doctor's office, he said to me, "Well, Mumma, we have to look on the bright side. At least I'm not on crutches."
After much research, we discovered that Alex is too young for an official seizure dog. Most organizations require kids to be between the ages of 7-12, mostly because there is a lot involved in the owner training and managing the dog. We have done the next best thing, which is to locate a puppy with all the characteristics one might want in a seizure dog, and to train her ourselves through the obedience levels up to therapy dog, while using some of the techniques to train her to respond to a seizure. Frankly we hope Alex never has another seizure so she may not have a chance to get that training. Snow White, who is white as snow, with black spots as dark as ebony, including one that is shaped like a heart on her back, and a tongue the color of a rose, sort of, is the snuggliest puppy we have ever had. Part bloodhound, she also has the best nose on her of any dog we have ever seen. She seems to feel a natural pull toward Alex, which most dogs don't. She sleeps in his room and as she matures, we plan to transition her to his bed, although we may have to buy a bigger bed. Her paws are enormous. She is not the runner dog that Harry Potter is, and that is fine. Potter, who is an amazing caretaker, has begun to tip us off that Alex isn't feeling well. Three times he sniffed Alex all over on mornings when Alex wasn't well...we think he can smell the body changes. We hope Snowy will be as helpful. As far as therapy goes, Snowy is already proving her worth in dog food. When Alex is frustrated, he often goes into his room and reads to Snowy, or pats her "magic ears" which are as soft as velvet. If you have a child with special needs, I recommend you get a dog. There is nothing like the non-judgemental character of a dog, who will listen to anything and serve up a load of love, to ease a child's frustrations. Although I need to vacuum up dog hair every day, I feel Snow White is an investment in Alex's mental and physical health. In fact, she's been good for all of us. I often catch Erik snuggled up with her watching late night TV on the couch. I can handle the extra dog hair.
Monday, April 29, 2013
Breakthrough seizures happen, despite medicine. Every so often, something happens that triggers the brain and it overpowers the dose of medicine someone is taking. Hopefully the medicine at least makes it a smaller seizure than it would have been. Alex had a breakthrough seizure last week. We had warning signs, but missed them at first. All weekend, he was cranky and agitated. That I noticed but I hoped he could just get extra sleep and feel better. But, he kept waking up at night, which has always been a sign that his brain was over active. On Monday I took him swimming, which I am realizing is not a good idea when I suspect his brain might be heating up. Something about swimming helps to trigger them. I can't decide if it is the chlorine, but it might be. Chlorine gives me a headache, so I think it might be antagonizing Alex's brain. Alex swam at least twice a day last summer without a single seizure--and he wasn't on drugs yet--until he got strep throat and then he had one. Then on Tuesday morning, he said he saw an orange glow around his dad. Minutes later, he got dizzy and then went through the usual motions of his seizures--vomiting, shaking, eye rolling. We had to give him valium and he slept for several hours. When he woke up, he had a migraine, which also seems to accompany the seizures. By early afternoon, he was finally able to wake up, talk and eat a little bit. He was talking very slowly for a few days, but after about a week, he seems to be back to his old self. We will continue to take it easy this week. We also upped his dose of medicine slightly, because he was on a very low dose, just barely within the therapeutic limits. Although I try to focus on today, and this year, and not get ahead of myself too much and ask myself, for example, who is going to give him rectal valium when he goes to college and has a seizure in his bed at 5am...but I am a huge planner and I usually have several plans in my pocket for every possible life scenario I might find myself in. When Alex had his seizure, Harry Potter knew what was happening. Alex is not particularly attached to Potter because he is Izzy's dog and Izzy won't share. Potter is also a bit rough for Alex who gets knocked over easily. But, he is a hound with a good sniffer and he spent the entire day pacing around Alex's bed whining and growling and trying to tell me that something was very wrong. This was all after the seizure, not before. But it gave me the idea of finding a therapy dog for Alex who would be trained to sense his seizures are coming, so that Alex will be able to take the necessary steps to protect himself. So, I'm hunting for just the right dog and just the right trainer. If anyone has any thoughts on this one, post a comment...I read and appreciate them all!
Thursday, April 18, 2013
For the past two days, I have been teaching kindness to Alex and Izzy's preschool classes. Following the workshops, someone told me that the public school teachers complain constantly that all they do is discipline their students and that kids are just not kind to each other. I specifically designed my value-based language arts curriculum to address these problems with discipline, which boils down to a lack of character. I firmly believe that if the schools spent the first part of every school day teaching values, they would significantly reduce their discipline problems and increase the acts of kindness they witness on a daily basis. Students who live by good values create a strong and self-reliant character, and do not need to bully. Our quote for kindness comes from Plato, "Be kind, for everyone you meet is fighting a harder battle." Our classwork includes role playing, where one student has a problem and the other student shows support and kindness. In the end, they are required to make physical contact, whether it is by means of a handshake, hug or pat on the back. The kids connect, and they love it. I have been immensely impressed with my little 3, 4 and 5 year olds. They participate wholeheartedly and go home with an understanding of the values I teach. The homework for kindness requires the students to perform at least one deliberate act of kindness (hugs for Mommy, a love letter to Daddy, a nice deed for a neighbor) and then to draw a picture of themselves doing this good deed. If they can write, they may add text. Many people comment about how kind Alex and Izzy are to each other. They hug and kiss, they say "I love you" multiple times a day, they give out compliments to each other. People ask me how I ended up with such kind children. I always respond, "I force them to be kind". Even a small act of un-kindness gets discipline. I pick my battles and this one is a battle I fight. Values--all of them--are learned. In the beginning, they may be a bit forced, because they may not come naturally to children, but in the end (like when your kids go off to college), the values will be a part of their character, and living by these values will be as natural as if your children had been born knowing them. Spend a few minutes each day reinforcing the importance of kindness this week with your children. Seeing them do something nice for someone else may give you some comfort from the events of the past week. We are all mourning for Boston. As my grandmother, Mimi, use to say when she was feeling sad, "It's time to do something nice for someone." Show kindness and help your children grow into kind human beings.
Friday, April 5, 2013
Alex's left has has not progressed as fast as we had thought it would. He still has very limited control over it, despite our best efforts at yoga, strength training, karate, etc. Much to his frustration, we decided to cast his good hand and make that lefty work. When he was about three, we did this constraint induced therapy for about three weeks, with excellent results. The minute you cast the good hand, the brain switches and starts to focus on the weak hand. This is especially important because Alex's right hand has become very strong and capable of acting without his lefty, and so we need to take that side out of the picture for a while and encourage the right side of his brain to work. In the past, we have added a few shots of botox to the muscles most affected by the CP in his left arm. Botox incapacitates those muscles, which then relax and allow the other muscles to work harder and become stronger. After about three months, the botox wears off and the other muscles have had a chance to grow stronger, and the whole arm and hand function better. We did not do the botox this time, because we were not at the clinic that offers it, but may consider another round of botox before we head into the summer. Alex also got a brace for his left foot, which straightens it out as he walks and runs, and forces his heal down so that he walks heal-toe, which will lengthen that large muscle of the calf (the same one I ripped apart this fall), as it is not growing as fast as the other muscle of the calf. The tight calf muscle is therefore restricting his leg movement and makes the leg appear shorter. A long day for Alex yesterday (and for Mommy and Izzy). Fortunately, the cast on his arm is waterproof, and can be submerged in water-in fact, you can even swim in it-because around 9pm, Alex got hit with the stomach bug and threw up all over himself and right down into the hand of his cast. Yuck. Nothing like having a stiff, hot plaster around your hand and arm over slippery brown vomit. After a long bath, and much soaking, we finally got the cast clean. I tried to blow dry it to speed up the drying process. This morning it was dry. We may have to remove a bit earlier than planned.
If you have a child who demands a lot of attention, chances are your other children may feel left out, and in fact, they are probably correct in feeling this way. Although we have tried hard to give equal attention to Izzy, the fact of the situation is that Alex needs a lot more help and support than she does. At times, she acts out to get attention. Since Alex has started on the trileptol, he hasn't had a single meltdown. The reason we took him for the EEG was because he was having these strange meltdowns and he would tell me that he couldn't control his brain. Our neurologist is very good, and I am so thankful that he listened to me. Sure enough, Alex was having constant spikes in electrical activity, which resulted in an out of control brain, even when he wasn't have obvious seizures. It is amazing that Alex was able to articulate that to me. Izzy has never had a meltdown. She gets mad and slams doors and tells us all not to look at her and to leave her alone, but she gets over it quickly and she always remains in control. Fortunately, she doesn't imitate Alex's meltdowns to get attention. But, she has her own way of pushing everyone's buttons and there are times when I want to sent her to boarding school and then I realize what she really needs is a big hug. This winter has been particularly challenging for many reasons, and Izzy has shown the stress in her behavior. So, last weekend, I took her for a girls' overnight in NYC and we stayed with two of her favorite people on earth, who are like surrogate grandparents to her. When we attended the Matisse exhibit a few weeks ago, Izzy decided she loves NYC. So, that's where we went when I realized she needed some individual and focused attention with Mommy. She loves everything about the city, the noise, the cabs, the tall buildings, the fashion and she especially loves her surrogate grandparents and their apartment which she announced, after inspecting the bathroom, was "perfect!" The two of us went to the zoo, saw a real polar bear, visited the Plaza, had ice cream, fed the horses who pull carriages just like Cinderella's carriage, and ate pizza in the train station. We were zonked on the return trip on the train. She was a new kid the next day. Even more grown up that usual, all smiles, full of stories. She is old enough now to remember that trip. She talks about it all the time. If you have children who sometimes get the short end of the stick, plan a day alone with one at a time, on a regular basis. I remember my Dad used to do this with us. Every year, he took us individually on a special trip, right up until the year he passed away. The last conversation I had with him on the phone, when I was in Indonesia and he was at home getting ready for Christmas, was that he planned to take me to the Plaza for brunch to celebrate my 24th birthday when I came home from my extended trip. He died on my birthday that year, and we never had a chance to have that brunch. When Izzy turns five, we'll make up for it, and celebrate at the Plaza, over brunch, a special day for both of us.
Monday, February 18, 2013
We've had one of those winters which incites us to say things in the summer like, "I really hate winter." The truth is, I don't hate winter because it's winter, but because we get extremely sick and our activities, training, nutrition, and positive mental attitude are just off, no matter how hard we try to maintain our normal lives. My calf rip and subsequent blood clot meant we decreased our workouts. Then I suffered a very serious bleed, which finally couched me for many days. Then bronchitis and colds, and then a second round of bronchitis which became pneumonia, for all of us, meant a lot of sleepless nights and inactivity. After about 2 months where the kids missed their morning runs, 4-5 days/week of swimming and daily biking (indoors around the kitchen island), I noticed Alex has started to walk on his toes on his weak side, and to crumple his left arm up into a ball. In short, the lack of our therapeutic activities meant that Alex's tight side has become seriously tighter, at a time when he has been growing quickly. I have always said that the best therapy for him is not the 20 minutes expensive sessions with a professional therapist, but the daily physical triathlon activities we do: swimming, biking and running. Unfortunately, this winter proved my theory correct. Now we are facing an uphill battle to get those muscles back in use. With temps in the teens and ice covering our trails, we are faced with all indoor activities. Wearing shoes and a brace on his weak foot, we are now running 30 minutes every morning around the island. I have Alex in the pool, almost every day. I have also encouraged him to get back on his bike as well. We do much of this exercise to music and I try to make it fun. It is going to continue to be a long winter, despite what the groundhog said, and I need to find a way to return a bit of lightheartedness to our workouts. If you have a child with cerebral palsy, or even if you have a child with no injuries, to the best of your child's abilities, spend some time each week engaged in three activities: swimming, biking and running. You will be building important muscles groups and brain synapses.
I have been debating whether to include philanthropy in my values book, since we already have charity. The two are closely aligned these days since the meaning of philanthropy (love of people) has shifted to accommodate modern society. But, I tried it out on the kids. In my introduction, I have pointed out that the distinction between philanthropy and charity is that philanthropy uses private money to solve problems at their roots, while charity uses public and government money to help alleviate pain. Both important, but different. I try out my classroom projects on the kids, before I include them in my book. So, this weekend, when there was nothing to do because Alex and I had pneumonia and Izzy had bronchitis, we spent a nice morning working on our philanthropy projects. After a brief discussion about how philanthropy solves problems at their roots, I asked the kids to draw/paint/color a picture of a philanthropic organization which solves a problem in the world. I threw out a few suggestions: animals, children, water, and environmental cleanup. After some thought, and building upon a previous conversation I had had with Alex, he decided he would draw a picture of a "poop water cleanup house that also grows watermelons because you can eat watermelons to stay hydrated if you have no water to drink" and he guessed he would place this philanthropy in Africa. So, he drew a lovely picture of poop water (sewage) with nice big brown blobs in it, going into the house and clean water coming out. Then he drew his watermelon patch. He actually made 7 different attempts and decided in the end that none of them was perfect, so he crumpled them all up and drew a picture of punctuality (the other value we have been studying this week) with a picture of him arriving to school on time, and fireworks going off in the distance. He mentioned that the fireworks start at 8am and school starts at 9am, so if you get there early you get to see the fireworks because "the early bird gets the worm", which was our quote of the week. Izzy, building upon her brother's comments, decided she would place her philanthropy in Mexico (which we had been studying this month) and would create a watermelon company that also made ice cream, because both would keep you hydrated if you were thirsty. She decided that she would serve ice cream with watermelon on top. Her artwork is amazing. She has grandma's talent for sure. In the end, she also added a cotton candy cart that could be pushed all around selling beautifully colored cotton candy, because everyone loves cotton candy. She drew a picture of a little girl eating her ice cream with watermelon on top and as I spelled them, she wrote Watermelon and Ice Cream Philanthropy. As often happens when we study a value, we tend to hear it everywhere. Last night while watching The Wizard of Oz, the wizard described philanthropy to the Tinman and was having trouble saying it. Both kids knew it and shouted it out. I think in the end I will include philanthropy. It's President's Weekend. If you looking for projects to do with your kids today, a short project on philanthropy, as described above would be fun. Write the word, define it, explain it, give examples, then allow your children to create their own philanthropy through drawing and writing. Be their guide and cheerleader.
Saturday, February 2, 2013
Last week, I taught a values workshop on courage to Alex's preschool class. Now that my book is nearly finished, I have started testing it out on children other than my own, to work out some kinks. Alex's teachers were kind enough to welcome me into the classroom last week, and it was a blast. I taught from my PreK/K textbook. Alex's favorite value is courage, so I decided to start with that one. The lesson lasted about 20 minutes and the kids were totally engaged. Each lesson has a method. I introduce the value, "test" the kids to see if they know what it means, help them give examples to understand the meaning of the value, connect the examples to themselves, reinforce the value through an in-class exercise, and then assign a homework project that involves their caretakers which is then reviewed the next day in class. For courage, the in-class exercise involved little skits about scary activities a typical preschooler would find himself in. Their homework assignment was to draw a picture of themselves doing something courageous. On Friday, the assignment was due. The class parent sent an email reminder to the parents about the homework assignment and most of the kids managed to get it done and bring it in. As I had been up most of Thursday night with Alex on account of his seizure, I was exhausted on Friday morning. I completely forgot about the assignment I had assigned. After dropping Alex off at school, Izzy and I turned to leave and a little girl came up to me with her homework. Her mom helped her explain the picture she had drawn, about last summer when she learned to swim in a lake that had fish in it. I gave her a high five and praised her profusely for her effort. Then another little girl showed me her homework, with a picture of her reading a book. On the back her mom wrote that she had been scared of this one princess story because it had a scary witch in it, but that she found her courage inside (my catch phrase) and now she can read it and not be scared. I high fived her too and told her mom good job on working with her daughter on the homework. As the children filed past, homework in hand, I realized I had forgotten Alex's. I raced home to get it and bring it back in. At my suggestion, the teachers spent some time that day allowing the children to stand up in front of the class and explain the pictures they had drawn about themselves doing something courageous. When I picked Alex up that afternoon, the teachers said the whole exercise had been excellent, and that they planned to put the drawings together in some kind of book. Then another parent stopped me and told me that her daughter had learned so much from the workshop and she really appreciated my efforts. Having been up all night, I was a bit emotional, and was close to tears by the time I left the classroom. Teaching values is important. Not a single child (except Alex) was able to explain courage to me before the workshop. Each and every one of them was able to explain it after the workshop. The exercise not only taught an important value to little minds heading off to kindergarten next year, but connected the entire class as they shared scary events in their lives, and parents who were involved in the homework assignment. And, it was fun. Alex asked me if I would come teach in his classroom every day. I would love to found a charter school, but given our needs at home, will spend any spare time I have to bring values into the public school.
Friday, February 1, 2013
Alex had yet another seizure last night, which would make four in just one month. We are working with the dosing of his medicine to try to control these horrible episodes, but still, there is no guarantee he will ever stop having seizures. We have no idea if the problem is scar tissue, his shunt, or something else. We have become accustomed to waiting and seeing. Being madly in love with someone who has an uncertain future can be tremendously stressful, and in fact, causes biological premature aging. Of course, everyone's future is unpredictable, and as parents, we always worry about our kids no matter how healthy they might be. Parents of sick children exist on another level of worry. This worry can cause myriad problems, from depression to divorce. When Erik and I were imagining our family, we dreamed, like most, of having smart, healthy children who would run and play and enjoy childhoods filled with friends and endless sunlight. The sudden shock that our lives would be anything but normal and the yearly developments of complications caused from Alex's premature birth, have been accompanied by a degree of post traumatic stress. I am a huge advocate of running to reduce stress--running keeps me on an even emotional keel every day. But reduced stress is not a measure of happiness. So how do we find happiness when someone we love lives in a fragile balance? I'm sure there are many answers to this question, and to the general question about finding happiness. For me, and for Erik, the key to our happiness is to live as best we can in the moment, and in this moment, we are parents and friends. So, we spend as much time as we can enjoying our children. Sometimes enjoying them means splitting them up, so that we can share good one-on-one time. Sometimes, it means turning on loud music and dancing like crazy people, because the kids are full of beans that day. Sometimes, it means snuggling them to sleep because they have had a bad day or are scared or simply want to feel us close to them. It means saying no to anything that takes us away from family time. It means slowing down the pace of our lives and our commitments until we walk at our children's pace. We try to see our lives through their eyes. They want hugs. They want us home, together. They want Friday family movie night. They want Saturday family trail run. They want summers at our place on the lake. They want to bake cookies and then eat them all at once. They want to snuggle in our beds at 3am. They truly just want love and to be loved. They don't care what kind of mark we leave on the world when we leave it, they just want us in it. They don't care what kind of education we received, they just want us to read with them. They don't care if they get into the best colleges in the country, they just want to pursue their strengths and what makes them happy. We no longer concern ourselves with what our kids get from the world, we focus only on what we can give them as their base and primary teachers. I am completely unconcerned about what the school teaches our children in terms of academics. I will teach them anything they lack. All I care about is that they are happy. I don't think our society is designed for happiness. But, fortunately, we can design our family however we choose. When Alex was born and we were given the brutal facts about his brain damage and his prognosis, I said to Erik, "We'll love him as best we can for as long as we have him." To this day, we live by this belief. Then again, the same would be true for any child, regardless of his health. Choosing happiness is a more difficult choice than it appears. Sometimes it takes work to stay in the moment, to appreciate today, to hug our children even when they've just launched one of Mommy's heels at the TV. But choosing happiness brings meaning to every day, and at the same time, may just slow down premature cell death (and that means fewer wrinkles!). If you struggle with happiness, try writing down three things you appreciate from your day, every day, before you go to bed. You will be amazed at the improvement in your outlook on everything, from your kids to your dog.
Saturday, January 26, 2013
One of the values we find most important to teach our kids is the value of charity. Obviously, we run The Baby Alex Foundation and donations to our charity are the means by which we give out grants. But we don't talk about the Foundation much with our kids. Mostly, we talk about our community and how important it is to help others near where we live. Our family's 2013 value of the year is abundance. Our lessons to the kids on abundance is that the more you give out of anything kind and nice, the more good you create in the world. Give out love (or any kind deed) and you will create a ripple that will grow and expand and one day come back to you. My kids have a sticker chart that reads, "Alex's/Izzy's Good Deed Chart". We give out stickers simply for doing good deeds. This week, the Foundation was approved as a charitable recipient on the ECHOage website (www.echoage.com). This website makes it fast and easy for parents to create online invitations to their child's birthday party. In leu of gifts, the parent asks for a donation. Half of the donation goes toward buying a nice gift for the birthday boy or girl, and half serves as a tax exempt donation to the charity of the party holder's choice. The idea of ECHOage is brilliant. If your child has a birthday party coming up, consider giving ECHOage a try. Choose a charity, talk about the importance of giving to others, and watch your children's perspective on life deepen. They won't miss the small, plastic gifts, because they will be getting one big, nice gift instead. Plus they will be helping ease the burdens of the world. On our kids' birthdays each year, we donate to a cause. This year, through ECHOage, we'll not only donate, we will involve the families of all the kids invited to their birthday parties to get involved in charity.
Thursday, January 24, 2013
Whether you homeschool your kids full time, or simply like to give them fun, educational activities to keep them busy on the weekends, there are some amazing materials to try. The kids and I recently discovered IXL math (www.ixl.com). This program costs $79/year plus $20/year for any additional child--believe me, it's worth it. It's amazing! Starting with preK-4, this program builds upon your child's skills at the state standard. So, if you are homeschooling, you can track your child's progress against the state standard to be sure you are keeping up (or getting far ahead). To supplement this math, try Khan Academy (www.khanacademy.org). The guy is a genius. He has videos for every level, and he teaches with such simple clarity. Especially if you find your kids are excelling beyond your own knowledge, Khan Academy covers everything from PreK number lines to Physics. For reading and vocabulary building, if you want to do more than simply read with your kids, work on phonics and maybe give them sight words each week, you might try Sadlier Vocabulary Workshop, which is sold according to grade level. There are online audio programs which go with this. Again, you keep track of their progress and measure them against the state standard. And if you want to teach your kids values, within a context of extensive thinking, journal and essay writing (plus drawing if they are young), come back this summer for my book!
Sunday, January 20, 2013
Mommy School is in full swing this winter. We started Mommy School two years ago out of pure necessity. I couldn't find a preschool that taught my kids what I want them to learn, both socially and academically, so I created Mommy School. My kids love it! Although the kids still go to preschool, primarily for their social development and to keep up with state measurements of achievement, I teach Mommy School in the morning before school, on the days one of them is home with me, and after dinner. After much research on The Responsive Classroom (www.responsiveclassroom.org) and in line with our Mommy School study of values (about which I am writing a book for the public school system), Mommy School looks like this. (By the way, my children naturally wake up by 5:30am. I am up at 4, when I run with the dog, shower, make lunches and prep for the day, and then make breakfast, which is loaded with healthy fats. Our studies on the brain have shown that healthy fats and low carbs/sugars are key to a healthy body and brain development, especially since we have a child with brain damage and a seizure disorder.) So, here is the schedule: 6am breakfast, 6:30 Mommy School begins with Morning Circle (based on The Responsive Classroom), 6:45 Station One Assisted Activity, 7:00 Station Two Independent Activity, 7:15 Station Three Group Activity, 7:30 Final Circle, 7:45 Brush Teeth and out the door for exercise (karate class, trail running, etc). I have a chart with five stations on it: Math, Reading/Writing, Art, Music and Physical Design. The kids mark which station they want to do for each of the three activities. By the end of the week, they have to have a mark in each of the stations, although they can repeat stations as often as they like. The kids love this setup. They get to choose what they study every day. They get stickers for good effort. They get to work with help, independently and as a group. Our mornings used to be hectic and sometimes involved cartoons and then by the time we tried to get out the door, everyone was complaining and uncooperative. With the cooperative nature of Mommy School in the morning, which the kids love and look forward to, they brush teeth and get out the door with total cooperation. I give out tons of stickers on their sticker chart for good behavior, cooperation, effort, etc. which also motivates them. On the days I have one child home with me, we continue Mommy School, mostly by playing board games or working on a longer project. Our board games are Candy Land, Monopoly, Scrabble and Chess. Although they needs tons of help playing these games, they love them and are learning a lot about math, reading, spelling, colors and how to follow the rules. At dinner every night, we review our values. We study one value each week from my book. We give examples of the value and talk about how the kids might have practiced the value that day. Then after dinner, they have some time to write in their values workbook and then its time for bed (brush teeth, reading, etc). There is a lot of structure to Mommy School, and yet the kids have a lot of choice, which gives them a feeling of empowerment and improves their overall interest and cooperation. During the afternoons, we often do a sport (swimming, gymnastics, etc) before coming home for a few hours of completely unstructured free play, which is as important as anything I might teach them in school. We have almost entirely eliminated TV. I love Homeschooling, because I get to teach my children the skills that I feel will allow them to be happy and successful adults. I let them fail, a lot. I encourage them to be resilient, curious, self-motivated and independent. They also must learn to be patient and to work in a group. I don't believe Homeschooling needs to be exclusive to school, but rather can be an awesome supplement for a parent who can schedule it into whatever lifestyle the family pursues. Our number one rule for Mommy School, as chosen by my kids when we created the Mommy School rules, is HAVE FUN! And we do. Try some homeschooling with your kids. You may be amazed at the results.
Monday, January 14, 2013
Today, one of my closest friends, Christina, passed away. When Christina was about 34 weeks pregnant, she was hit by a car driven by a colleague as she crossed the entrance to the parking garage of our place of employment. As she was struck by the car, she put both hands on her stomach to protect her son, and fell backward onto her head which bled severely. She spent months in the hospital and then in rehab. Through pure determination, she made significant progress in her recovery, although she always suffered the effects of her brain damage. A few years ago, Christina was diagnosed with cancer, very likely fueled by the stress she suffered during this tremendous trauma. She battled cancer the same way she battled her brain injury, with hope and belief in a better future. Her husband, Jon, was by her side unlike anyone I have ever witnessed. He took care of her, encouraged her, protected her. At the same time, he and Christina raised their beautiful and sweet son, Connor. The year before Alex was born, I raced my first Ironman in honor of Christina and my friend and Dartmouth classmate, Lisa, who was hit by a truck while biking, an injury that caused extensive brain damage. As I ran into the water of Ironman Florida, determined to finish for my two good friends, I had no idea that a year later, I would be standing in the neonatal intensive care unit holding the tiny hand of my own son, whose brain damage would threaten his early life and change our lives forever. Not only is brain damage the leading cause of death and disability to anyone under the age of 25, it can cause a domino effect on the entire body over a lifetime. We miss Christina. Both of my children were mad about her. I took Izzy to see Christina during her last weeks, because Izzy feels such a strong connection with her. Izzy stood outside Christina's bedroom and took a long look at Christina that day, and shook her head and said, "Poor Christina." Then she gave her a big hug before we left. Christina's life, and death, will remind us to live a little bit more thankfully for every day we have together.
Monday, January 7, 2013
After Alex's fourth seizure, and an EEG that showed constant spikes in electrical activity around the area of his brain damage, we decided to put Alex on Trileptol, an anti-seizure medication. Brain damage often causes seizures, due to the scar tissue that remains, the existence of a shunt, and possibly other reasons we don't even understand. Although Alex's seizures have been diminishing in their severity, as we get ready to send him to full time kindergarten next year, we really need to be sure he is safe. We want to minimize the risk of falling should he have a seizure in school, at a friend's house, in the pool, etc. We also hope that the medicine will calm the abnormal electrical activity which I have suspected (and is the reason I insisted on an EEG last month) has been the source of Alex's daily exhaustion, his meltdowns and his poor sleep patterns. Alex sometimes tells me that he feels a meltdown coming on, and doesn't know what to do. He also tells me that he feels like his brain is out of control. Most people who have seizures can tell when they are about to have one. Although his seizures were often not outwardly manifested, they were happening. So, we'll see. He started the medicine yesterday. He slept through the night last night, an extremely rare occurrence.