The Latest and Not Necessarily Greatest News

After a tough couple months with our little Noah, we decided to make yet another attempt to find a diagnosis and get some treatment advice. Noah is still a happy and charming little guy, but his skill acquisition seems stagnant. Most directly effecting our day to day has been his behavior issues. He is out of control and difficult to manage pretty much anywhere outside our door. So, once again we head to the hospital for some answers.

For nearly four hours Friday morning we were at Doernbecher Children's Hospital. There a Psychiatrist and Developmental Pediatrician examined him and watched him play. The hope being that some sort of pattern would emerge in his behavior that would clue them in to what is really going on. So, once again Geoff and I retell his medical history, explain his behavior, diagram his skills. All the while wondering why this isn't recorded from the 120 other times we have had to tell some medical person all of this.

At the end of the appointment we were left with little more than shoulder shrugs. The developmental pediatrician is referring us to the Autism Diagnostic Team so we can retell our story again. She felt however, like us, some of Noah's behavior may fit with that diagnosis, but some of his behavior does not. Most significantly, I don't think you can receive an Autism diagnosis if you are engaged with people which Noah very much is, he just doesn't understand how to communicate appropriately.

The Pediatrician also called Noah "mentally retarded", which outside of the juvenile urge to say "no, you are" was no surprise. Obviously, that is an ugly phrase, the doctor even seemed hesitant to say it. However, over the last year Geoff and I have been quietly coming to terms with the likelihood that Noah is "intellectually disabled" and no longer just a child with delays. Again though, we are left with a blanket term, like Epilepsy, that is describing a symptom of something, but not a diagnosis on it's own.

When talking about treatments to help him we got more of the same. I don't know if it's a testament to our awesomeness, but we have been doing all of their suggestions since Noah was a year old. He is in Early Intervention, enrolled in CDRC (Childhood Development and Research Clinic) at Doernbecher, we have paid ungodly sums for private therapy, and I work with him constantly at home.

So, where do we go from here? We will meet with the Autism Team only because that diagnosis would open doors for more services at school. And then I think we will be taking a big break from the pursuit of a diagnosis. I think Geoff and I both walked away thinking the medical community just hasn't caught up to Noah yet. --Amy

New Rules

After a couple of rocky visits to friends and family, I think we may need to have a talk about Noah coming over. We all know about Noah's impulse control (or lack thereof) and his sensory seeking behavior. These issues make it difficult for us to bring Noah most places. Typically as children get older your world to explore as a family opens wide, with Noah we feel the opposite. There are fewer places we can take him. We are trying to wrestle a spot between feeling isolated and not going places that set Noah up for failure. It's a constant walk on a tight-rope. Navigating the world with a special needs child is not easily understood, even our closest friends and family don't understand it. In fact, Owen understands better than most what it is like because he lives it every day, and every day is what it takes to know the realities of our situation. Coping with Noah and his special needs is a learning experience for us. It is also a learning experience for those in our lives.

My sweet baby has been in therapy since he was 9 months old. We are working as furiously as possible to help him learn to self-regulate his out of control behavior. We also spend a ton of time and money trying to teach him to play with toys. Seems like a funny thing to have to teach a kid until you step into a therapy environment and find its full of toys. Lots of special needs kids don't have the motor skills or cognitive understanding to play with many toys. When an average child sees a toy, they want to play with it, interact, pretend. When Noah sees a toy, he needs to touch it, taste it, bite it, then probably throw it around a little bit. It's just who he is and a product of his delays.

At home Noah has plenty of places to play. We don't have knick-knacks or anything down that couldn't handle a good throw. We also have bins of beans, cheerios, and outside sand and water with which he can get his sensory seeking ya-yas out. We have a high tolerance for mess and can clean with lightning speed. We think of Noah affectionately as our "Baby Godzilla". Now that doesn't mean we think you need to prepare for your house to be Tokyo, but here are some ideas that may make visits from us less stressful for all:

1. A quick sweep to get up any knick-knacks, breakables, or inedibles up. We need to remove anything that he can break and also anything he could put in his mouth that would be bad for him (like potpourri, flowers, mouthsize decorations, etc). Some things that may also need to go depending on the room: dog bowls, dog toys, picture frames within reach (if outside, pick up the dog poop). You may also want to consider blocking access to electronics, and anything filled with dirt, ash, mud, water if you don't want him to play in it.

2. If we need to avoid any rooms please speak up. We will not be at all offended if it's just easier to not go into the room decorated with fine china and priceless art. But please don't deny Noah access to the room where everyone is gathered. We didn't come to your house to sit by ourselves or feel isolated.

3. Noah needs something to do at your house. As we mentioned, he doesn't really know how to play with most toys, so that obvious solution is pretty much out. Right now he loves to fill things up and dump them out. I don't mind bringing him some bins and cereal, but he will get it all over. Geoff and I have no problem cleaning up before we go, but however Noah plays it will be messy.

4. Noah will try to entice you to wrestle with him but PLEASE DON'T (ATTENTION GRANDFATHERS AND UNCLES: RE-READ THIS SENTENCE)!! He doesn't know how to calm himself after he gets all excited. He will then challenge everyone else to wrestle regardless of how unwilling they are to engage. He also doesn't understand that wrestling is not appropriate with all people, like the little girl with Down Syndrome in his class that is half his size.

5. Sorry, but from here on out, we probably won't be able to attend family events and big get togethers. Noah gets so overstimulated and they last so long or start so late that it is a disaster. We hope this won't be a life long sentence. For holidays this may mean that Owen and Geoff or I stop by briefly, or we have you over in smaller groups to our home. We love our families and love spending holidays with them, but it just doesn't work right now. We ask for you patience and understanding as we try to spend time with you, spend time with each other, not feel isolated or excluded, but also not set ourselves up with a situation that we know to be an anxiety ridden failure. That is a tall order to balance and honestly, we are struggling to find our way.

6. Lastly, we want to ask you to accept Noah. Some people treat him like he just has a cold and one day it will be better, others treat him as if a cure will come soon, some still think he just needs the right medication or therapy to make him better. We wish it was that simple. The truth is, it is far more complex. As we wrote in a previous post, Noah's condition remains somewhat of a mystery, and chances are, it won't be getting better for a long, long, time if at all. It would help us if our friends and families accepted that Noah is who he is. Let's not pretend anymore that he is something different. Your job, like ours, is to help us make Noah the best person he can be with what skills he has. That acceptance makes it easier to employ the kind of changes we are asking. Noah needs a soft place to fall, not another complex room to navigate.

I know it feels like we are asking a lot from all of you; we are and we know it. But we want to feel welcome in your home, all of us. It is miserable when Geoff or I need to chase Noah around someones house because there is just too much for him to get into. It means we can't have a conversation, or even sit down. We love our friends and our families and really want to be apart of your lives. We hope you all decide that we aren't too much work.

Amy and Geoff

Race Day Recap!

June 19th, 2010 is a very important day in our house. Our team Noah's Noggin regrouped to participate in the Epilepsy Foundation NW Race/Walk for the second year. This day is so very special to Geoff and I because it means so much to us that our friends and family will donate, raise money and give up their Saturday morning to show their support for us and our Noah. This is the day that makes us feel that we aren't alone but are surrounded by people who share our fight to find a cure for Epilepsy; That we have your love as we try to find our footing as parents of our special needs Troublemaker.

This year we raised nearly $1000 over last year's figure of $1755.55. That is something I am immensely proud of. Our final tally is $2660.00. Although our fundraising was dramatically stepped up this year, it was not enough for us to win a trophy. The entire race is a bigger event this year and all of the teams really increased their fundraising. But, you know, I am just fine with not winning if it means more money to help those with Epilepsy.

Thank you, thank all of you who raised money and made us feel so loved. I hope we have all of you with us again next year!

The Search Continues...

Our little Noah is still without a diagnosis, we know Epilpesy is an umbrella diagnosis that categorizes his seizures but it does not explain the greater global delays he has. Like any parent would in this situation, I have been reading endlessly to find an explanation and it has only been in the last few weeks that I found something: Sensory Processing Disorder. What is Sensory Processing Disorder (SPD) you ask? It is a neurological and nervous system disorder where Noah needs a lot of sensory input to understand his surroundings. Put simply, it is why Noah had to throw himself on you, bang his head on the couch/table/floor/pillow/bed, cram everything into his mouth, and play in water/mud/barkdust/sand. SPD is often an issue for children with an Autism diagnosis. For children with Autism, SPD can manifest itself with being overly sensitive. Those are the children who can't stand to feel grass on their bare feet, the tag in their clothes drives them crazy, and certain food textures gag them.

Unfortunately, we know that these are not the full extent of Noah's issues. He has global delays, which means in every developmental category (cognitive, speech, gross motor, fine motor) he is significantly delayed. When assessed, Noah's skills are repeatedly found to be those of a 1 year old. Noah is no longer a baby, he is 4 years old next month. We don't have a name for what is going on with Noah. One doctor thought maybe Autism, but that hasn't been agreed upon with other doctors and just has never felt right to us. He is far too engaged with people, far too social.

Through our blog another family with a child very similar to Noah found us. Their son is 8 years old and still experiencing the same issues as Noah. Now, I am speaking for someone else so I may be misstating some information, but their son also has seizures and global delays that are extremely similar to Noah's. They also have been given the "maybe your son is Autistic but we just don't know" talk. There may some day be a disorder named after our boys, because so far, no one can tell us what our children have and what to expect.

We are doing everything we can think of to help Noah gain skills that will make his life and ours easier. Some days I feel like we see such immense progress. He has some ASL (American Sign Language) signs, we think he can say "DaDa" for Geoff and "down" and I'm pretty sure he yelled "up" at me the other day when he was mad. But these are word approximations that I don't know if others would hear. He is much better most of the time around other children. He seems to understand that they don't like to be hit or dived upon. But other days it still feels like we have so far to go: when he threw a french fry in some woman's hair at McDonald's, or when we had to leave a 4th of July party after 25 long minutes because between the fire pit, kiddie pool, dogs, associated dog poop, and men to wrestle with, we just couldn't get him calm enough or find a safe spot for him.

So, we are learning to navigate our way through the life of a parent of a special needs kid just as Noah is learning too. It is a precarious balance between living a "normal" life and trying to give both of our boys a lot of learning and fun experiences and not putting ourselves in situations that are extremely stressful and plain just not fun. Some times we have great successes and some times we have spectacular failures, but we can just keep trying and learning. As long as we can get through this with more smiles than tears, I think we are a success.

-Amy

97 Days

I was at work upstairs. My desk is right next to the window which is usually open on warm days. The room gets a nice breeze which seems to mock me as I send out each email. Occasionally I hear the cackle of two boys playing in the sandbox, a mother correcting some behavior, sometimes I even get to smell a grand breakfast being prepared on the grill outside. But Monday, June 21st I heard Amy ask Noah if he was okay, followed by her telling O to get Dad. I knew when I heard her ask Noah that question that the string of 97 days seizure free was broken.

It has been a long time since we have been able to say ninety plus days. We have had the occasional month with no activity, almost got to two months a few times, but never ninety and certainly not ninety-seven. We can most likely attribute this to the medication he is on. There is also a possibility that he is growing out of the earlier form (which seemed to knock him around at least once a month with seven to ten seizures in a single day) and moving to more complex form. Not nearly as frequent but more powerful. In the end, who knows? The doctors continue to be at a loss however, we don't dwell on that much. Our job is to just help Noah be the best he can be.

The seizure was short, no more than thirty to forty seconds, but the after effects were strong. It took The Fighter nearly a full week to reach his baseline, a full week to regain his muscular control and body sense. Like always though, he came back. He can take a punch, he may be pushed around, but he will get right back up and flash you that smile that melts your heart. He will look at you with the most penetrating blue eyes, and the child who only says two words, will speak a thousand with one look. "I am fine Dad, I can take the punch. Just hold onto me, give me that snuggle that tells me the shaking will go away. Together we can do this." Noah, we won't back down. Ever.

For the Fighter:



Best,
G

On the Brighter Side of Things

I've always been a pretty positive person. Without trying very hard I enjoy myself almost anywhere and can see the bright side of nearly any situation. I have a perfect example. I went on a trip to Mexico with my best friend, Amanda and her sister (also, my friend) Dana several years ago. When we got back from that trip Amanda and Dana would joke about what a terrible trip it was. The first time they did, I was like, huh?

To give you the highlights:
-- The first night we are there Dana realizes she is pregnant with her son, Justin, and can't drink; On a Mexican vacation-no alcohol, I don't think its ever been done before poor Dana had to endure it.
--Mexico was also experiencing some sort of cold front, so it was freezing cold the whole time we were there. We sunbathed under newly purchased blankets by the pool.
--We went for a horseback ride and my horse who I had nicknamed "Muy Mal" had diarrhea and I thought was going to die beneath me.
--Dana had menu mishaps wherever we went. Ordered chicken fajitias that were so gross the street dogs were not even interested and got a seafood pasta that smelled so bad it put me off my own dinner.
--We had wild dogs attack our rental car, got lost in the same rental car in some shanty town where I thought we'd never make it out alive.
--On the way home we had a multi-hour drive to get to the airport. In Mexicali, which we had to drive through, there was some sort of saints' day parade blocking most of the streets and locals had decided that was a good day to burn all the garbage in the city making it a hazy, lung chocking mess.
--The delay in Mexicali meant we missed our flight and had to wait 12 hours for the next one. Amanda was so exhausted and sick by the time we got on the plane that it was the first and hopefully last time I get to witness someone using the barf bag the airline provides.

Somehow through all of that I still walked away thinking I'd had a fine vacation. I think I have proved my point on how I look on the bright side of things. I have always thought of life as a journey and it's not good or bad but will always be, for everyone, a mix of the two. I think that attitude has helped me enormously with coping with my sick child. And luckily, I think little Noah has inherited my attitude.

Some once asked me if I would wish Noah to be different. You know, of course I wish all the time that he didn't have to work so hard to gain every new skill and that he wasn't plagued by seizures that scare us all. I don't, however, wish he was different than who he is. I am so immensely proud of Noah. He works so hard at school, therapy and with me at home. He does it all with a smile and giggling. Noah is trying, right now while I am writing this, to make me laugh. He loves people and you know when Noah loves you. He greets you with crazy giggles and a huge hug. If he really loves you he may include a bite because he is just so darn excited to see you. I would never be ashamed that he is a special needs kid. Noah is awesome.

Special Needs is the New Black

It just so happens, without intending to, I have read several novels about parents raising their special needs kids. "House Rules", "Windless Summer", and "The Memory Keeper's Daughter", were dramatic stories where the families really struggled with their child's special needs. In each, the fictional families were surrounded by hostile adults who judged and isolated them. One book even went to so far as to have the characters in this modern small town think the fictional girl with autism was a witch.
I am not sure if the books are inaccurate, I am really lucky, or times are changing. I prefer to think the last one. I feel so fortunate that I have never had a problem with any adult being rude or unkind to me once they understand that Noah has health problems and developmental disabilities. Maybe an occasional funny look at the grocery store when he has decided to amuse himself by squeaking like a seagull. In that instance, I am willing to believe they are just glancing over and not judging us. Special needs kids are experiencing a media blitz. Granted that means everyone wants to call Noah autistic, which isn't his diagnosis, but people I think are more aware and more compassionate.
It is an odd situation though, when someone is looking at Noah and then looking at me to explain. Sometimes I just feel that his story isn't something I need to explain to anyone and everyone we meet. Other peoples' medical histories get to be private. That may seem strange considering we write a blog about him. But I really see our purpose here to update those who know and love us, to offer compassion to those who live like us, and to offer insight to those who don't have special needs people close to them. And this sharing is on our terms and we get so much from all of you too. It isn't just to satisfy some stranger's curiosity.
I do think that I haven' yet experienced the full public scrutiny of public outings with my special needs child. Noah is only 3. People often don't notice he's non-verbal, they just think he's being shy when he doesn't respond. A temper tantrum or needing to be carried aren't too out of place for your average 3 year old.
Our sense of isolation is more self-inflicted. Noah does have some behavior issues, that are getting better, but still can make socializing so hard. We played in the backyard instead of out front yesterday because he was "too hitty". The only kid who enjoys his company is sweet little Courtney, who blew him kisses threw the fence. Other kids are scared. Kids his age and some of the older kids don't understand that he is just trying to play when he is too rough. Because, really, in that hugged-too-tightly kid's mind, it doesn't matter Noah's intent only that they didn't like it. One of the older neighbor kids, Melanie deserves a big kiss from me because she always says hi to him and interacts with him for a minute before going off to play. Our friends and neighbors are as understanding as can be. So our sense of isolation is no where near as profound as in any of the books, but we need to push Noah's chunky butt over this play skills hurdle so we can go to the playground, outside, the library without me hovering over him ready to apologize.
We are all still learning. Noah's skills are growing. He has great days at school, is getting play skills therapy from his occupational therapist, play ground help from his physical therapist. Geoff and I reinforce what he learns in these environments at home. And I am learning how to be an advocate for Noah, how to come out of my shy personality to speak up for what he needs and who he is. But I feel and hopefully this feeling won't change, that the world is ready to embrace children who don't fit the mold and who struggle. I hope so sincerely that this trend toward understanding children and parents of children with special needs continues to be warm, embracing, and inclusive to societies most vulnerable people.--Amy

Purple Day

Purple Day 2010 is here and the world is turning purple!From the Purple Day website:

Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Why? Epilepsy affects over 50 million people worldwide. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined.

Why purple? Lavender is the international color for epilepsy.

Together we can make a difference. Together we can ensure that Epilepsy gets the attention it needs to secure funds to support research and outreach programs. The government invests $140–160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders. Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40–50 per patient from nonprofits.

All told, epilepsy receives less total funding per patient than Alzheimer’s, Parkinson’s, and autism. Per researcher, funding for epilepsy lags average funding for all diseases by nearly 50%. It is hard to imagine finding a cure (or cures) for epilepsy will be feasible without a significant increase in funding across all three sources. In particular, much can be done to drive an increase in contributions to epilepsy organizations for research, where the gap is most significant relative to other neurological disorders (cureepilepsy.org)

Visit www.purpleday.org for more information on this amazing movement. Click HERE to get involved in Team Noahs Noggin. Only together, can we make a difference. Go Purple!

Best,
G

READY? SET? GO! REGISTRATION IS NOW OPEN!

REGISTRATION INSTRUCTIONS:


1. CLICK HERE

2. CLICK JOIN OUR TEAM

3. FOLLOW DIRECTIONS ON THE WEBSITE

4. ARRIVE AT THE RUN/WALK ON DATE SPECIFIED AND ONCE RUN/WALK COMMENCES RUN OR WALK AT A BRISK PACE

5. ATTEND THE AFTER-PARTY(LOCATION TBD)

Last year we had more individual donations than any other team. This year, we take the the whole thing! More updates soon. Team Noah's Noggin is officially in training!

READY? SET? GO!

Best,
G

TIME TO MAKE A BIG SPLASH

Owen isn’t terrified of water, but he certainly does not care for it. Noah on the other hand could live in the water, fortunately he never grew scales or fins, that would just add to his already complex medical problems. The dislike Owen has for the water is equal to our dislike for eating out as a family. Amy and I love to eat out, but as a family we just can’t do it. Noah’s impulse control problems present themselves at restaurants in the form of throwing food as soon as it is in his grasp and the fellow diners end up wondering why bits of melon are raining down from the sky. The cackling, screaming, too-loud-for-a-restaurant-setting three year old in the booth next to them quickly answers that question. So, with a five year old who doesn’t like water and a three year old who can’t eat out, we decided to go to a water park in Centralia, Washington. Great Wolf Lodge, home of four restaurants, a wave pool, water slides, and a 1,000 gallon bucket of water. What could go wrong?

Nothing, nothing at all. It was a brilliantly calm pause in an incredibly hectic past few months. Weeks ago we wondered what was next for Noah, and here we were, playing in the wave pool as a family, having the time of our life. O was hesitant at first, it took him a while to scope the place out and become comfortable around the water and that was certainly expected. His rapid acclimation however stunned myself and Aimes. Within twenty minutes he was climbing all over the water house (featuring various water cannons to aim at the swimmers below), heading for the water slide, and splashing in the wave pool. In fact, the roles were reversed, Noah seemed to be the overly cautious fellow. Noah sat in Mama’s lap nearly the entire first day, gently patting the water. I suspect this had more to do with the crowds of people and noise and less to do with the water.

After our first day of play, we returned to the room where we pretended none of us had spent the past three hours in giant pools full of children who knew, I’m sure, that it really is best to “hold it” and use the restroom. But I too was little boy at one time, and I too remember the freedom that comes with public pools….Ahem…moving on.

Our return to our room brought with it a well chlorinated family and after a quick wash up we decided to head to dinner. A public dinner. In a restaurant. Noah has never had a time where he wasn’t throwing food or trying to “booth jump” to the patrons behind us. What could go wrong?

Nothing, nothing at all. While Noah preferred to stand instead of sit, he kept his food on the table and was on his best manners. Amy and I were both fairly tense, how would we explain it to the other families? How would we deal with stares? What would the waitress think? Ultimately deciding: Who cares? After sitting down and getting ready to tell the waitress that we had a special needs child and anything she could do to speed it up would great, Noah decided for perhaps the first time, he was going to enjoy this. He ate a little, not a lot, but it all ended up right in his belly and not on the floor. I felt like we needed a standing ovation when we were done, but instead we settled for some cookies and chocolate dipped strawberries.

Being the parent of a special needs child means living a life that the majority of people don’t relate to and we certainly wouldn’t expect people to identify with it. For lack of a better word, it is just complex. There are doctor appointments, therapy appointments, behavioral issues and in Noah’s case you add to that impulse control problems and seizures. Much like someone in a wheelchair must think from time to time of people walking around “you just don’t know what you have,” Amy and I have thought from time to time when we see families at restaurants “you just don’t know what you have.” It is the smallest things we tend to take for granted. With time though you adapt, you take chances like we did at Great Wolf Lodge, and sometimes, you hit a home run. The water is bravely and joyously embraced. Food goes in the belly and not the floor. Being a parent requires you to adapt, being a parent of a special needs parent requires taking a chance. What could go wrong?

Nothing, nothing at all.

Best,
G

MRI Results

Hooray! Hooray! Shout it from the roof tops! Okay, that might be a little much, but we had a great meeting with Noah's neurologist, Dr. Roberts. He went through the MRI Noah had about 2 weeks ago, slide by slide and told us that Noah's brain looks great. It was as a brain should look, every thing symmetrical, well formed, growing as it should be. Now an MRI is just still photographs, so this gives us no information on how well blood is flowing, cells are functioning or how communication is moving through the brain. But what this does tell us is that he is not currently a candidate for surgery.

Noah's brain shows no damaged area that a surgeon would need to remove. I personally have been dreading the possibility of surgery. I feel (quite possibly incorrectly) that brain surgery is still in a medieval state, up there with leeches and cupping. Medical knowledge on the brain is far from complete and surgery to help alleviate epileptic symptoms is rarely successful but still pursued if medications are not working. I am so glad to keep that option off the table for now.

Noah is still making strides and still having seizures. Geoff thought to ask Dr. Roberts if he was taken back by the severity of the seizure Noah had a few weeks ago when we were forced to call an ambulance. Unfortunately, Dr. Roberts answer was no, this is just the nature of epilepsy.

So, where does that leave us? Pretty much where we were before: continuing with the same medication but at a slightly higher dose and continuing with Early Intervention preschool. We are also adding additional therapy through Doernbecher Children's Hospital, where we are very happy except when we need to park. We are still working hard to keep our little Noah healthy and give him a chance to learn and grow. Thanks for keeping up with our family--Amy

TEAM NOAH'S NOGGIN UNITES JUNE 19TH!

Epilepsy Foundation NW just announced June 19th for the annual run/walk. As most of you know, last year we came in second place in total donations but first place in total individual contributions. Although, I think we did end up taking first place when the race was over as we had donations continue to stream into the website for about 2 months after the event. This year, let's make it official! Noah's Noggin will be number one.

It has been a rough year. Our struggles and our ongoing fight have been well documented on this blog. This year though (cliche alert!), it's personal. Epilepsy has affected us more than we ever thought it would. So it is with a smile on my face and pure joy in my heart that I say "GAME ON!" Let's break records, lets support an organization that does so much for the greater Epilepsy community. Let's scream to the sky that you are not alone. Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide (cureepilepsy.org). Help is needed. You are needed. Team Noah's Noggin needs you.

As soon as the link to register is released I will update all readers. Thank you in advance for everything I know you will do to make this the best year for the Noggin yet.

READY? SET? GO!

Best,
G

AN OPEN LETTER TO GOV. PALIN

Governor Palin:

You are in a unique position. As the mother of a special needs child you have the ability to bring attention to the needs of the disabled in ways most people cannot. As the Father of a special needs child, I lack a national platform and despite how great my family may think I am, my presence alone does not command the attention of thousands of people plus the media. The need of the disabled isn’t a liberal or conservative cause. So, why do you make it such a political issue?

Last week you criticized White House Chief of Staff Rahm Emmanuel for using the term “f-ing retarded” to describe a plan for liberal activists to buy ads criticizing fellow Democrats on health care reform. In your statement to the press you demanded that President Obama fire Emmanuel. You wrote “just as we’d be appalled if any public figure of Rahm’s stature ever used the “N-word” or other such inappropriate language, Rahm’s slur on all God’s children with cognitive and developmental disabilities – and the people who love them – is unacceptable, and it’s heartbreaking.”

Emmanuels use of the word was not offensive to me. Nor was Rush Limbaugh’s use of the word even though he seemed to put the word on a float and march it down a parade route (see the full transcript of his remarks here: http://emptysuit.wordpress.com/2010/02/06/rush-limbaugh-transcript-rahm-emanuel-retards/ ) You dismissed Limbaugh’s remarks as “satire.” I certainly hope as a former Governor and someone who came close to being our Vice President that you know what satire is. Satire would be the Daily Show, Saturday Night Live, Letterman, etc. Rush Limbaugh isn’t satire; he provides commentary, in particular, conservative commentary. Mrs. Palin, if you are going to display faux outrage at the use of the word “retarded” then it’s really best to make sure that you apply that standard to all people, not just democrats, lest you look like a political opportunist.

Stop using your child as a prop and as an applause line. Stop looking for ways to be offended and actually use your status (such as it is right now) for good. Draw attention by testifying to senate committees, starting massive fundraisers or awareness campaigns. Advocate on behalf of your child for a better future instead of seeking new ways to be offended by a word that wasn’t being directed to handicapped people in the first place. Your act is growing old, your partisan outrage is pathetic, and the way you are using your child isn’t fair to him and it doesn’t do justice to the good parent you probably are. Honestly, it’s a little retarded.

Best,
Geoffrey Hunt
Father

A POETIC UPDATE

Well it has been just over two weeks since Noah was nearly lost, but take just one look at him today and you wouldn't know it. Shortly after what is now known as "the really bad day", Noah regressed, I would say substantially so. His muscle control and impulse control were greatly affected by the seizure. This was not unlike the massive seizure at Doernbechers. When he came home from the hospital in September we went through a similar stage of regression. Each time he has needed two weeks to regain muscular stability, and impulse control. He isn't back to his baseline yet, but he is close.

Next week we are going back to Doernbechers for an MRI just to look for any kind of peripheral damage and to make sure there hasn't been any further neurological impairments. We wont know the result until our meeting with Dr. Roberts on March 1st. We will make sure to update the blog then with the very latest. For what its worth though, Amy and I have not seen evidence outside of what I talked about above of any further damage.

The past few weeks have been incredibly difficult. As Amy discussed in the last post, our Fortress of Solitude was invaded by a thief of consciousness. An event like that shakes you to the core. It makes sleeping difficult, it makes moments of calm near impossible, it just adds such a great hesitancy to everything but it will pass. It has to right? I was telling Amy the other day, when you get a new car you always have the rule that nobody ever eats in the car. Eventually though, the kids are starving or you need something fast and you eat in the car and then that rule disappears. Eventually we will eat in the car, the calm will return, and we will be just that much more prepared to battle the thief.

I do want to send one more THANK YOU to all of the readers of this blog, our friends, family, and especially our neighbors who were there for us in a moment of crisis and care for us like a family, or maybe just like a community should. We could not have made it without each and every one of you. I will leave you today with a little poem I wrote for Noah (because I am sappy). I wish you all a great weekend and we will talk again soon.


I will burn down the house, to see the sun

I will slash the tires just so I can run

I will run before I walk

I will sign before I talk

I will sing a song before I know the words

And always dance to a song that is never heard.



Hold me Daddy until this storm passes

Lips of blue and a racing heart

Comfort me as I shake

I feel like I am breaking apart



I see halos of angels on everything around

Time moves slow as my mind slips out

When I come back I look for you, Momma and O

And there you are, holding me close

Forever strong



Son, I want you to know

I am here, never leaving

Together we will persevere

No one knows the why’s and when

But I want you to know I am there when they begin



I will burn down the house, to see the sun

I will slash the tires just so I can run

I will run before I walk

I will sign before I talk

I will sing a song before I know the words

And always dance to a song that is never heard


Best,
G

SUDEP

Our home, like I would hope for everyone, is our little sanctuary. I mean yes, everyone knows about all of our construction woes and we are quickly outgrowing it, but I still love our little house. I felt safe here, I felt my kids were safe here. But after Noah's medical emergency last week, I don't feel as safe. The comfort and sanctuary vanished the moment Noah stopped breathing on the floor of his room just twelve days ago.

I have to admit something to you and to myself, I am scared. I normally can stay calm and positive in the moment of crisis because I don't allow myself to dwell on what I can't prevent. My trick is to think about what I need to do right now and what is the very next thing I need to do. No further. However, when that crisis is Noah having a seizure, I think about his immediate comfort and I look at the clock to start timing. Then, I think about what he may need next, whether that's a phone call to 911 or his emergency medication. I don't allow myself to think about long term complications from a serious seizure or my worst fear, Noah dying.

Noah has only experienced one other seizure where he completely stopped breathing and required someone to resuscitate him, and that was in the hospital last Fall. But now that he has demonstrated that he can have a seizure that severe at home, I have found myself spending all day waiting for it. I am scared to have him out of sight because if he stops breathing he has only seconds to receive medical attention. I know Geoff is the same way. The feeling from (nearly) two weeks ago is just as raw as it was the day it happened. There is a sudden hesitancy to everything, G and I seem unable to fully enjoy a quiet moment.

People with epilepsy are 2-3 times more likely to die than the general population (www.med.nyu.edu/cec/epilepsy/sudep.html). Sudden Unexpected Death in Epilepsy (SUDEP)kills 50,000 people yearly in the US. SUDEP is similar to SIDS where the actual cause of death is still being researched and debated. There is no way to know if Noah will be one of those people. It worries me that he falls into a category that makes up most of the cases: poor control of his seizures, generalized seizures during sleep, a learning disability, and a young male.

We have taken new steps to reduce his seizures (boy, have I written that sentence a dozen times!). We have increased his medication, have emergency medication scattered everywhere he might be, and he is getting another MRI this month to determine if something new/previously undetected is going on in his brain. I keep telling myself we are being as proactive as we can be and I can't worry about the maybes. I am just still a little rattled yet and hope to be my positive, hopeful self again soon. --Amy

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.