Even Before Our Rough Night Last Night. . .

Even before our rough night last night my friend Nicole sent me a text. She wanted me to approve a FaceBook posting about the half marathon she is planning to run in April and what her plan was for the run. Nicole wanted to get sponsors for her run to raise money for our Noah's Noggin team on behalf of the Epilepsy Foundation NW. Here is her FaceBook post:

Nicole Odom To Friends and Family:
As many of you know, I am starting to train for a half marathon and have decided to run for a good friend's son- Noah. As hard as it is for me to run, I know the struggles that they live with everyday (including a trip to the ER last night). I would love to raise money for the epilepsy foundation ...though their Team Noah's Noggin. To read more about them, here is a link to their Blog. I am hoping to raise at least $500. This would only take 38 people donating a dollar a mile- $13.10. They are a wonderful, strong family who has endured so much with smiles and hope. I hope that you will help me reach my goal!! noahsnoggin.blogspot.com

I am so touched by her thoughtfulness and by all of our friends. When I got home last night, I was wondering why my neighbor Mark was running up onto my porch. And I thought it was funny that my neighbor Martin was coming out of his garage. They were all coming for us. All of the comments here and support we receive in person, on the phone, and through FaceBook is what keeps us strong. Thank you all so much. Love--Amy

The Fighter Wins Another Round

For a child that wakes up every time a bump is heard or the wind blows, last night God covered Owens ears and he slept soundly. He didn't hear the firetruck and the ambulance, didn't stir when 5 firemen rushed upstairs to his brothers room, and didn't flinch at the calls of "stay with me! Stay with me!" It was a bad day that turned into a worse night, and through it all Owen slept like an angel just as angels worked hard to save our fighter.

Amy went to Pilates last night with her friends from the neighborhood. After a long day it was a chance to escape, a chance to forget about the seizures that had rocked Noah. There where five total and each of them were intense, but the last one was at 2:38 in the afternoon so he had put some distance between the last seizure and bedtime. Noah went to sleep around 6:00 and Amy left around 6:20. Owen and I listened to some music, a new favorite of his is Pearl Jam, he loves to pretend he is in a rock band and it wore him out. He was ready for bed by 7 and as usual he went without a fuss. I grabbed a book and turned on a movie (multi-tasking at it's laziest)when about 45 minutes later I thought I heard a dog barking. Boy, shut that dog up! I thought. Then a moment of panic hit me, that's not outside, that's in our house. I ran upstairs to find Noah in the grips of a seizure like I have never seen, it was simply massive. His body shaking violently, his lungs gasping for air. He needed his emergency medication immediately.

I ran downstairs to get the Diastat and grabbed my phone. I pulled Noah from his crib and and lay him on the changing table so as to administer the medication that has a Valium like effect and should stop the seizure. I called 911, the operator was asking questions but I hung up after she said the ambulance was on it's way. The drug injected I moved him to the floor and placed a call to my Mom so she could stay with Owen, knowing that we would certainly be on our way to the hospital. I also called our neighbor Mark thinking my Mom wouldn't get there in time. It was after that call that Noah stopped breathing, his body turning an instant shade of gray. I placed my ear to his chest and confirmed that his lungs weren't taking in oxygen, I then tilted his head up and blew two breaths into a body that had become lifeless. The air worked and shocked his system or his body reconciled with the medication and he began breathing, that first gasp of air was an amazing victory, the fighter with a firm right hook to the seizure that was trying so hard to take him. Amy had come just in time to see me breathing air into our child. Her presence brought an instant calm to the situation. In a moment of crisis, Amy is the person to have by your side as she has an amazing ability to act with calming urgency.

"Stay with me, stay with me!" I pleaded. He has been through so much and I knew he had so much fight left. "Come on buddy, come on!" as I cleared his mouth. And then the first gasp of air came just as the the firefighters arrived. They gave him oxygen, took our report, and placed him in an ambulance to the OHSU emergency room with Amy riding with him in back. I followed with my brother sitting next to me in the car, "He's going to be okay" he said, "we got this." I knew we were in the clear but his support meant the world to me at that moment. "You okay?" He asked. "Yeah," I said "Just shaken a bit" I said.

After a few hours in the emergency room we were released. Noah recovered remarkably well for a seizure of that strength. We need a follow up visit with his Neurologist and to talk about what happened and exam him for any damage that we cant see, but this morning he was talking and signing, and probably the hungriest I have ever seen him. We came so close to losing him. Back in September in the ICU we were close, last night I think we were closer yet, each time though is another victory. We are a bit numb today, still in shock but also so thankful for what we have. So fortunate to have both our boys, one that slept well, the other not so much.

Today is a new day. Today is another opportunity to be the best person, best parent, best son, daughter you can be. Nobody knows how much time we have left, but I do know how hard we fight to get another shot. I know how hard Noah fought. I like to think that each of us will fight just as hard. Don't waste second. Please keep Noah in your thoughts today, we are blessed to have the little fighter at home.

Best,
G

Days Without Incident: 0

Have you ever been late for a flight only to make it just as the door at the gate was being closed? Ever been stuck in traffic on your way to an appointment only to make it on time? That is the same feeling you get when your child is seizure free for over a month and a half. There are some tense moments, and it's always at the back of your mind causing the slightest bit of stress but then you are relieved when you hit that milestone. However, as any parent of an epileptic child can tell you, that safety can be pulled away from you quickly. While those moments of seizure activity are terrifying they leave us with a wide open calendar to set new goals. Noah was seizure free for over a month and a half, his longest stretch in over 2 years. So now we raise that bar, we set our sights on 2 months.

A year ago I would have laughed at that, but a year ago today, Noah wasn't even walking. He almost thrives on doubt, when Doctors declare he will never do "X" he does it, it may not be perfect, it may not look like the other kids, but it's his perfect. Epilepsy is a thief of time and humanity. The seizure Noah had this morning at 7:47am will rob him of more than 5 hours, his brain needing that time to re-adjust and find its electrical rhythm once more. As I write this I just got a Text from Amy, S-3Min meaning seizure 3 minutes in length, his longest one yet and only 2 minutes from the Red Zone when a call to 911 is placed. 2 months, come on buddy, you can make it seizure free for 2 months. We fall down so we can get back up, and each time Noah gets up tougher. 2 months! The bar is raised.

What are your goals? Do you have plans that you are sitting on? Are you using your time to better yourself? Moments like these remind me that I can never rest on achieving my goals, time is precious, your life is precious, what are you doing to be the best person or parent you can be? Are you ready to raise that bar? Are you ready to fight? Read? Set? GO!

Keep Noah in your thoughts today and buckle those seat belts, it could get bumpy!

Best,
G

Noah's REAL Noggin

Noah’s neurologist calls the brain a delightful symphony of neurons and electricity. Before Noah started having his seizures, I didn’t think much about the brain, and to many of you reading this I am sure that won’t come as a surprise. If a brain is a symphony, then Noah’s noggin is the most raucous rock concert in the history of man. We are talking Led Zeppelin turned to 11. In a typical brain, neurons are part of an intricate team that forms a vast communications network. In Noah’s brain, that communication network is disrupted when he has a seizure, which in his case, causes a loss of consciousness and makes his hands pulse and his lips, hands and feet turn blue. It is frightening to see, but reading in greater detail about how neurons should communicate has given me deeper insight into his condition.

Take one finger and touch a person's head (you may want to warn them of your experiment first), then take another finger and touch the person's hair, then take another finger and touch the person's hand. Each body part represents a neuron. Your arm is a neuron's axon, your fingers are the terminal buds, and the person you are touching is all the other neurons you connect with. That is how neurons connect. Thank the person you have been touching and please continue reading. If you failed to warn the person you have been touching, please come back when the dispute has been settled.

So, what’s a neuron? Neurons are electrically excitable cells that process and transmit information by electrochemical signaling, via connections with other cells called synapses. Neurons essentially are the building block or the foundation of the nervous system. Neurons have many short branches called dendrites, which are bushy branch like extensions of a neuron and their purpose is to receive messages and conduct impulses towards the cell body. Neurons also have a long extension called an axon, through which messages pass to other neurons or to muscles and glands. When two neurons form a connection with each other, the axon of one cell nearly touches a dendrite of another, leaving a tiny space called a synapse.

A person's every moment depends on the rhythmic participation of each neuron to properly sync to the electrochemical impulses that the neurons generate. Neurons should “fire” (as our neurologist says) around 80 times a second. In Noah’s case, his condition can cause the neurons to fire abnormally, which then causes a seizure. During a seizure, neurons may fire as many as 500 times a second. It is the misfire that damages the brain. Though the brain often recovers from that damage, Noah’s seizures were so significant the damage is permanent.

Noah’s new medication Limictal is effective in controlling the storm and managing the electrochemical impulses, but it is not 100% effective. Before Noah was placed on this medication, a bad day was 7 or 8 seizures lasting about 45 seconds on average; a bad day was at least twice a month and sometimes more. Now those bad days come once a month, occasionally twice a month, but that is rare. What is interesting is that his seizures are even more intense, albeit less frequent. They have gone from 45 seconds on average to almost two minutes on average. Is it worth the risk? Does he need new medication? Will the medication eventually catch up and further reduce the frequency? The lack of answers doesn’t provide a lot of comfort.

What does provide comfort though is the smile on that little boy’s face. He has a way of calming me; I find serenity in the way he fights back from a bad day. I can remember once after a very long and very bad day, he looked at me as he was coming out of a seizure and he gave me the brightest smile I have ever seen. The smile just said “I’m okay Dad, we’re okay, and we will fight this.” I was calm, he was calm, and together we sat as he fell asleep and recovered. He may only be 3, but he knows his neurons better than most people do. And he is none to happy with them!

Hope everyone is having a great week.

Best,

G

I need some Advice

I am a researcher by nature. I don't like surprises, I like to study up and understand what I am in for. My natural inclination doesn't suit raising Noah. With Owen, I have read countless child rearing books for each developmental stage he's been in, asked advice of parents who I admire, and can talk with his teachers to see where he is compared to other children the same age. I can't do that with Noah.

Each special needs child's disabilities and capabilities can be so widely varied there is no developmental milestones that you reach at an approximate time. While browsing books at Powell's or at the library I discovered none of the special needs books cover Noah. Part of the trouble is that we still don't have a diagnosis. Epilepsy is a symptom of some greater issue. Noah suffers from some unknown condition and his seizures have caused brain damage. He is our own little enigma.

I have no idea how to potty train him as he is quickly outgrowing the largest size of diapers sold at regular stores. Noah can be out of control in a public setting and I don't know how to quell that. He is outgrowing his car seat but his hypertonia (low muscle tone) makes me worried he won't be safe in a booster car seat. Every day I have new questions I don't know the answers to. And worse, I don't know how to find the answer.

His therapists and teachers are good for speech therapy and new play skills, but that doesn't answer my questions. His pediatrician the last time we saw him asked me if I have told Noah not to cross the street without a grown-up. I don't remember what I said but I was thinking I might as well say it in Japanese, Noah wouldn't understand. I know his doctor is aware of Noah's disabilities but his focus is physical health and generalities.

I am a confident parent. Owen is my shining example that I must be doing something right. But just having to muck my way through raising Noah without any idea of what I am doing is so very unsettling. Lots of frustrating trial and error is in store for us. --Amy

Ah! The new year!

Ah, the New Year! Boy, are we ready to start fresh! I know it's just an arbitrary day on the calendar, but the idea of wiping away the past and starting over with new goals, hopes and wishes is just too wonderful to not to indulge in. I have plenty of new goals, hopes and wishes for Noah.

Most of them involve working on his skills. He wants so badly to be able to communicate. His sounds are increasing, but our focus right now is to get him to sign more. Noah understands the idea of motioning to get us to do something he wants. He is learning them faster too. We decided to teach him to sign "milk" and he picked it up in 3 days. You too can sign "milk", just pretend your milking an invisible cow. Good Job! You've just signed "milk"! Would it be too self-serving to teach him "Mama" next?

We are still hard at work with developing Noah's social skills too. Due to school and patient neighbor children Noah is less likely to hit (as much). He reminds me of a dog my parents have: Bonnie is so desperate to be loved that she ironically drives you away. Noah is so desperate to play with other kids that he gets too excited and doesn't know what to do with his energy. And no body wants to play with that kid. But we do see improvement. He settles down after a few minutes now, usually.

Our hopes for him medically is to remain as seizure free as possible. We are already trying our 4th medication and he's not yet 3 1/2 years old. If we can't find a medication that keeps his seizures contained the next option is surgery. I really don't want to put him through something so tramatic. But his current meds have reduced his seizures to about 1 "bad day" a month, down from 2 "bad days" a month on the previous medication. His side effects, like excessive sleepiness or irritability seem to be minimal.

Noah's goals preoccupy us, but the rest of us 3 Hunts have New Year's resolutions too. Geoff has vowed to make us less of a TV watching family and Owen's goal is to play more basketball. My goal, I am almost hesitate to say out loud because then I'll be committed; but I think I am going to take up some serious running. Really because I am a copy cat and all my friends do it! I'd like to feel physically strong and looking good in a swim suit isn't a bad deal either.