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