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