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.

Let's Call it a Year!

Here we sit, together. After the most difficult year we have ever faced, here we sit, together. More than 5 times Noah stopped breathing, but here we sit, together. I sat in a an empty house, Owen at my sisters and Amy at the hospital, I wondered how many people would be living in this house in another week. Here we sit, together.

The postings stopped on this site after September, unfortunately it became a causality of the difficult year that was 2009. The year that has transpired has been a tremendous roller coaster of highs and lows, and in the end, we decided to stay silent for a while. I was absolutely unwilling to write about Noah or the trials and tests our family faced. Part of it was exhaustion, part of it was the feeling of needed privacy, part of it was just the fear of a final post about our little fighter. The holidays changed that though.

I started to reflect on what has transpired, the remarkable stories that have taken place. The hope that was found in a 3 year old. The inspiring reaction of a 5 year old. The dedication of a Mom who is forever committed to helping her sons be the best people they can possibly be, regardless of the barriers. Those stories deserve to be told. This is our first posting since September and it will likely be the last of the year. I promise though that in the New Year, we will be posting bi-weekly at the minimum so stay tuned. We will share the good, the bad, the inspiring, the funny, the trials we face with raising a very curious 5 year old and a special needs 3 year old. Here we sit. Together.

We have so much to be thankful this year. We are thankful for all of our friends and for all the support you have provided us. I honestly don’t know where we would be without each of you. You are the foundation that we build on and the sturdy rock we lean on when we need help and we are incredibly fortunate to have you in our lives. We are thankful for our sweet and caring Owie, he has seen and experienced things that I would never want a five year old to see and go through but I honestly believe he is a better person for it. My brother Shane says that O is the oldest 5 year old he ever met. I agree.

We are so thankful for our little fighter, Noah. When faced with the largest of tests, he breaks through the wall and comes out even stronger. He is an example for all of us how to tackle life’s biggest challenges. If you ever think you are a having a terrible day and nothing is going right, just think of Noah and you will find yourself quickly coming to the realization that things aren’t so bad, and you can get through it. And as we sit two days from Christmas, I am so very thankful for my family. You have always been the most important thing in my life, you are the air I breathe and the reason each morning I wake up with love in my heart.

Ladies and gentlemen, that’s the show. No fancy or eloquent closing statement. I am done for the year but as mentioned, Noah’s Noggin is back next year, bigger, better, and a hell of a lot more frequent. May the best of your past be the worst of your future. Have a tremendous holiday season and a very happy new year. We love you all.


Best,
G

Results from the EEG

The big meeting to discuss the results from our traumatic Video EEG was today. I stayed home to pick Owen up from his first day of school while Geoff, with the capable assistance of his sister Lisa, met with Dr. Roberts.

Dr. Roberts said he was able to isolate the regions of the brain where Noah's seizures occur: the frontal lobe and the left temporal lobe. Knowing this helps us determine what medications may work best for him and as a result we are moving him to a new medicine that hopefully will mean no more "bad days".

Dr. Roberts was able to determine that the left temporal lobe is underdeveloped. This may be a result of seizures or may have existed before them and is just exaserbated by the seizures. This is the communication center for the brain, so this explains Noah's speech delays.

Noah's frontal lobe is badly damaged by seizures. This is the impulse control for the brain. Noah's hitting, biting, and general brawler behavior can be explained by the damage in this region.

Hearing that Noah's brain has damage caused by the seizures made me think of David Axelrod and his family. If you weren't already aware, he is President Obama's Chief of Staff and his adult daughter has struggled with Epilepsy since she, like Noah, was 7 months old. He and his wife, Susan, who runs Cure (an epilepsy research charity) had talked about how awful it is each time your child experiences a seizure and you know it's doing more damage and making your child's job to recover one step more difficult.

Dr. Roberts said that he cannot predict the future but he thinks it will be more likely for Noah to always be behind his peers. What works in Noah's favor is that we have been aggressive in pursuing treatment for his seizures and therapy to help him compensate for his struggles. He only just celebrated his 3rd birthday and the human body can recover from so much.

Geoff and I were sad to hear the Doctor confirm what we were thinking; that Noah will probably always be in Special Ed and will need life time care. But really that doesn't change our plan: to insure Noah has as many opportunities to achieve everything he can.

Our Boy is doing Well

Noah is getting stronger every day. He is back to not really napping and getting himself around. We are so glad he's doing so well. We will keep you all updated after we speak with the neurologist (who's name I vow I will one day get correct).

What Noah had to deal with in the Hospital