Met the new Doctor today!

Today, at Dornbecker Children's Hospital, we met with Dr. Robert Collins (or is it Dr. Collin Roberts? Darn those two first names!!). Geoff and I were really impressed, hopeful, and excited with him now overseeing Noah's care. We felt like he did a great job explaining where we are currently with Noah's care and where we need to go. We also felt like he was a good listener and just generally had a great first impression.

He told us straight up that he did not see anything with this initial visit that leads him to a definitive diagnosis. He also agreed with us that although our previous pediatric neurologist thought Noah may have an Autism diagnosis, he didn't really see it. Noah makes great eye contact and is very friendly. He also has many other issues, like low muscle tone, that aren't necessarily present in a child with an Autism diagnosis. So, we are still looking for our diagnosis. Our next step will be to schedule a multi day stay where he is concected to an EEG (so, he'll look like a science project) and a video camera will be in his room to record what is going on with him physically while his brain is giving a certain reading. This will be the one time ever where we are hoping he has a seizure.

We are also hoping Noah will qualify for Oregon Health Plan (Medicare). We have submitted an application for him and are just waiting to hear back. We were told that most kids who qualify as diabled (which he does) also qualify for Medicare. Our current insurance leaves us with substancial co-pays, so that multi-day stay will be much more feasible if he qualifys.

Thank you all for checking in with us and all the thoughtful gestures many of you have sent our way. We notice and appreciate all of them and all of you. --Amy

What Happens After A Seizure?

We had a great question from a friend yesterday: What happens to Noah after a seizure?

Noah has both absence seizures and partial-complex seizures. Though they are both distinctly different, they have (at least in Noah) the same post-seizure effect, this is actually called the postical-phase. They are so exhausting and taxing on his little body that Noah sleeps for a period of time ranging from 10 minutes to 45 minutes. Anything over an hour and we are to report to the emergency room. Same rules for a seizure that lasts more than 10 minutes, though I am sure I would be in the car after about 4 minutes. The picture on the right was taken about 3 minutes after the third of Noah’s 7 seizures on Saturday.

In fundraising news we are closing in on our goal of $1500. Thanks to everybody who has signed up, we appreciate your support more than we can say.

Final Count....

Sorry for the delay. We received a lot of email yesterday from everyone wondering where Noah ended up. Seven was the final count, it was probably more than that but seven is the number we can verify with certainty. He slept in yesterday morning until almost eight so that is an indication that he probably had a seizure in the morning then fell asleep. Noah sleeping late almost guarantees a rough day.

Thanks to all for the emails!

Best,
G

DAYS WITHOUT INCIDENT: 0

Looks like we are in for a bit of a rough patch. Noah is on his third seizure of the day and it's only 11:45am. Hopefully the day wont get out of control, usually though when they start like this they don't really stop until later. So far today, they are all partial-complex seizures (http://www.epilepsy.com/epilepsy/seizure_complexpartial), so blue lips, hands shaking, and general confusion. Jump onto that link, really does a good job of explaining what they are. I would also encourage you to poke around that site, it was started by a doctor who was just featured in Newsweek. Really great information!

Best,
G

Please be our friend
Something that is becoming more apparent as Noah is getting older is that having a special needs kid can be socially isolating. It's a weird situation when someone, either an adult or kid is trying to engage with Noah and they don't get why he's not responding age appropriately. I really don't want to go into his convoluted medical history with a stranger or near stranger ("well, he's developmentally delayed, and has epilepsy, but we don't really know what's wrong. . . ). Another issue with that is he does love people, especially other kids. So much so that he wants to pat them, harder and harder, because he doesn't know how to play with them. We don't do many play dates because it's too stressful with me chasing Noah around to monitor his behavior. I spend anytime he is around others apologizing for him hitting their kid (adults get a warning, and then are on their own). This has been hard for Owen too. He doesn't really know how to use playground equipment because I could never take him. First Noah was such a delayed walker I couldn't help Owen and hold Noah at the same time. Now, all my focus has to be on Noah. So, we really never go to library story times, restaurants, playgrounds when other people may be there, play cafes, the kid pit at the mall . . . .
But in happier news, we went to the zoo and both boys had a great time. It was the first time we'd been to the zoo since Noah has been walking. Now, instead of passively sitting in the stroller he was running around and really engaged with the animals. Owen, of course was more interesting in the old tractor than any of the animals that he misidentified (really, what otherwise very bright 4 year old can't recognize a cow?). Until next time--Amy

Days Without Incident: 0

Well, the little guy had a nice streak going but unfortunately it ended this morning. At about 7:40 am he had an episode that saw his lips turn blue and hands tremble. It lasted for about 45 seconds, comparatively it was not that bad but those 45 seconds feel like hours. You slip into this weird vortex where the clock seems to slow. You are so thankful when they are done, but then it's always followed by a wave of anger. 45 seconds is too much time to take from a 2 year old.

Best,
G

Our Endless Quest

One of the most frustrating aspects of Noah's health is the not knowing. That poor baby has given up pints of blood for various tests that always come back normal. Our latest $1200 round of testing, all normal. That feels like an odd thing to say--that I don't want to have these tests for whatever syndrome/disorder/illness to come back normal--but if we knew what was wrong, maybe we'd know what to do. We'd move from trying to diagnose to trying to help him overcome. We'd be able to look at treatments that have worked well for other kids. We'd have an idea of what to prepare ourselves for. We know he has epilepsy, but that is just a symptom of something larger. I want him to go to school, make friends, have a happy life, all I want for Owen I want for Noah. Noah has learned early to be a fighter. He works so hard with me in therapy, if there is a way to overcome whatever is holding him back he'll do it--We just have to figure it out.--Amy

5 Days Seizure Free!

Well, we have reached 5 days without incident. Nobo seems to be back on track despite that little hiccup. In the end, we knew there would be days like that but despite thinking you are prepared, you never really are. Seeing your child suffer through that and not being able to help is a unique and isolating feeling. Reaching 5 days after a rough patch is a big moment. Almost makes you forget that Noah tossed my new G1 phone into a bowl of a cereal Sunday. How can a kid who looks so angelic be so devilish? Answer: A wicked combo of the best of Mom and the worst of Dad. Lucky kid.

Until next time,

G

DAYS WITHOUT INCIDENT: 0 ...BUT....

Hope everyone is having a great day. Only 1 seizure today and it was really minor. Ahhhhh a return to normal-ish.

Best,
G

Our sweet boys

DAYS WITHOUT INCIDENT: 0 ....CONT.

Noah went down for bed about 30 minutes ago so I think I can safely give an official count. Looks like we are going to end up with a total of 7 seizures today. A "normal" bad day for him is 3, maybe 4, 7 is just intense. We haven't seen those kind of numbers since this whole thing first started when he was 7 months. Maybe his Epilepsy was just feeling nostalgic.

We were told that there would be some spikes though in the transition to new medications. Even if we were kind of expecting it, doesn't make it easier to watch. I was at work but Aimes caught every on of them. Our boys are lucky to have a mom that is so fast and so caring.

Anyway, rough day for the little guy, we hope tomorrow is easier for him.

O had a good day though, school is starting to wrap up and he can sense that change is coming. We were expecting a tough transition for him but it looks like it may be easier than we thought.

Best,
G

$750 AND COUNTING!

WOW! So today we reached our old goal of $750. You may have noticed that I raised our goal to $1,500 as we seem to be pretty aggressive fundraisers. We just received $150 today from a co-worker of mine, Mr Gail Webb. He wont be joining us for the run but he knows and is a fan of Nobo and O (who likes to marvel at how messy his office is). He is a great guy and we appreciate his support as much as we appreciate everyone else who is donating and running (or walking) with us.

Keep up the great work guys! We are on our way to $1,500!

Until next time,
G

DAYS WITHOUT INCIDENT: 0

As if any of us needed a reminder as to why we are doing this whole race thing, Noah had a seizure this morning at about 10:05am . It was an Absence seizure ( http://en.wikipedia.org/wiki/Absence_seizure) that only lasted about a minute. As usual, he took a nap after he came out of it which lasted about 30 minutes. This was another moment lost to a seizure. Each time he has an episode, it takes something from him. It takes time away, which right now, is vital to his development. Tell everyone you know about the race. Print a flyer and bring it to work. FIGHT! FIGHT! FIGHT!

In other news.....

Owen had his Kindergarten round up yesterday afternoon and he loved every second of it. His new teacher Ms. Reilly was very impressed by his level of education, hat tip to Wee-Wisdom Pre-School for the pre-k prep work they do so well. At the end of the day, unprompted, Owen walked over to Ms. Reilly and held his hand out to say "it was very nice meeting you." Always a gentleman. We are so proud of our little O.

Until next time,
G

WACITED!!

So, Owen has this thing he does. He tends to put W's in front of words that don't really need it. For instance: "Garage" becomes "Wagarage" and "Construction" becomes "Wastruction". It doesn't happen to every words, only 5 or 6. Well, today O told me that he is Wacited (see excited) to go to his kindergarten orientation being held at his new school today. He usually is not a kid to take change well, but he has been talking about this all week. I hope this anticipation doesn't morph into a puddle of tears.

In other news....We had our 6th consecutive day of $100 donations to Noah's Noggin. My Uncle Howie put in $100 this afternoon. We are so Happy to see all our friends and family help us find a cure and more effective medicines. Uncle Howie is one of those guys that I tend to put on a pedestal, it means the world to have his support. Amy is off today to help Erin prep for the wedding which means I am on Daddy duty all by myself. Smells like PB&J for dinner fellas!

Until next time,G

A Great Video....

There is a great website that just went online recently. It was started by doctors and it is all Epilepsy all the the time, sounds fun huh?

They have a collection of videos which really help to demystify the disease, at least to the extent possible. The link below is kind of an Epilepsy 101 video. I encourage you though to hang around and watch some of the others. Drop a knowledge bomb on yourself and dazzle the other racers with facts about Epilepsy, if you come up with something good they may stop in wonderment as you pass them up. MWAHAHAHAH, my evil plans know no bounds. Anyway....the video:

http://www.epilepsy.com/node/3006

Thanks again to all our family and friends for the contributions. We are now ranked 3rd in the Portland list of Portland fundraisers. NOAH'S NOGGIN REPRESENTS!! See you at the race racers.

Best,
G

To give you all an update on Noah's activity lately:
Physically, after nearly a year absence, he started having seizures again about 2 months ago. We just switched anti-seizure medication and he's much happier (and so are we!) with Keppra. On his new medication he's not dizzy and he is hungry again. He is now about 10 days seizure free.

Since January he's been attending Woodside School, a preschool program for special needs kids. Most days he really enjoys his class and his teacher Terri. Although, as my white hoodie can attest to, special needs two-year-olds and paint do not mix! He's been walking for about 2 months and has learned to sign "more".

Owen is finishing up his final year at Wee Wisdom Preschool, where he has attended for 2 years. As much as we are all looking forward to summer vacation and kindergarten for Owen, I don't think I am ready for my Owie to be a big kid and leave his comfort zone (and mine) at Wee Wisdom. Geoff and I are feeling much better now that Noah's health seems to be stablizing and he's back to playing and learning.

We wish you all the best, and thank you all for being apart of our lives and interested enough in my boys to keep checking in here! Love, Amy

READY? SET? GO!

So here it is, the long awaited blog for Noah's Noggin. This is THE place (in fact the only place) to go for information on our lil'fighter. Want to know how he's doing? Come to the blog! Want to know how the family is doing? Come to the blog? Want to know the latest in Epilepsy? Come to our house or come to the blog. Want to know the latest on the race? Come to the blog. Want to know how many calories are in a Whopper w/cheese? Go to Burgerking.com or google it. This is all Noah all the time. This is actually a Blog that is all about our family: G, Amy, Owen and Noah.

This blog will give all our friends the latest not just Noah and Epilepsy, it will also chronicle how each of us is dealing with it. Right now, we are committed to building up Team Noah's Noggin for the Epilepsy Northwest Foundation's Walk For A Cure. Want to join our team? Just pop over to this link:

https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=307541&lis=1&kntae307541=9BBC1AC53CBD4389B2D47E1071B1ABAB&supId=255156944&team=3399646

Just follow the directions. This is a Run/Walk so feel free to do both. I was going to gallup but then i decided to just sprint, before remembering that I cant, so now I am just going to jog. Our family has been so touched by the outpouring of support we have received from our family and friends since Noah's diagnosis. It has been a tough time for all of us but now we have to buckle down and focus on doing what we can for him. One way to start, is to donate to organizations that are actively looking for a cure and more effective side-effect-free medicines. Thank you in advance for signing up and/or your contribution. Words cant express our thanks but...thank you.

Until next time!
G