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