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