Let's Call it a Year!

Here we sit, together. After the most difficult year we have ever faced, here we sit, together. More than 5 times Noah stopped breathing, but here we sit, together. I sat in a an empty house, Owen at my sisters and Amy at the hospital, I wondered how many people would be living in this house in another week. Here we sit, together.

The postings stopped on this site after September, unfortunately it became a causality of the difficult year that was 2009. The year that has transpired has been a tremendous roller coaster of highs and lows, and in the end, we decided to stay silent for a while. I was absolutely unwilling to write about Noah or the trials and tests our family faced. Part of it was exhaustion, part of it was the feeling of needed privacy, part of it was just the fear of a final post about our little fighter. The holidays changed that though.

I started to reflect on what has transpired, the remarkable stories that have taken place. The hope that was found in a 3 year old. The inspiring reaction of a 5 year old. The dedication of a Mom who is forever committed to helping her sons be the best people they can possibly be, regardless of the barriers. Those stories deserve to be told. This is our first posting since September and it will likely be the last of the year. I promise though that in the New Year, we will be posting bi-weekly at the minimum so stay tuned. We will share the good, the bad, the inspiring, the funny, the trials we face with raising a very curious 5 year old and a special needs 3 year old. Here we sit. Together.

We have so much to be thankful this year. We are thankful for all of our friends and for all the support you have provided us. I honestly don’t know where we would be without each of you. You are the foundation that we build on and the sturdy rock we lean on when we need help and we are incredibly fortunate to have you in our lives. We are thankful for our sweet and caring Owie, he has seen and experienced things that I would never want a five year old to see and go through but I honestly believe he is a better person for it. My brother Shane says that O is the oldest 5 year old he ever met. I agree.

We are so thankful for our little fighter, Noah. When faced with the largest of tests, he breaks through the wall and comes out even stronger. He is an example for all of us how to tackle life’s biggest challenges. If you ever think you are a having a terrible day and nothing is going right, just think of Noah and you will find yourself quickly coming to the realization that things aren’t so bad, and you can get through it. And as we sit two days from Christmas, I am so very thankful for my family. You have always been the most important thing in my life, you are the air I breathe and the reason each morning I wake up with love in my heart.

Ladies and gentlemen, that’s the show. No fancy or eloquent closing statement. I am done for the year but as mentioned, Noah’s Noggin is back next year, bigger, better, and a hell of a lot more frequent. May the best of your past be the worst of your future. Have a tremendous holiday season and a very happy new year. We love you all.


Best,
G

Results from the EEG

The big meeting to discuss the results from our traumatic Video EEG was today. I stayed home to pick Owen up from his first day of school while Geoff, with the capable assistance of his sister Lisa, met with Dr. Roberts.

Dr. Roberts said he was able to isolate the regions of the brain where Noah's seizures occur: the frontal lobe and the left temporal lobe. Knowing this helps us determine what medications may work best for him and as a result we are moving him to a new medicine that hopefully will mean no more "bad days".

Dr. Roberts was able to determine that the left temporal lobe is underdeveloped. This may be a result of seizures or may have existed before them and is just exaserbated by the seizures. This is the communication center for the brain, so this explains Noah's speech delays.

Noah's frontal lobe is badly damaged by seizures. This is the impulse control for the brain. Noah's hitting, biting, and general brawler behavior can be explained by the damage in this region.

Hearing that Noah's brain has damage caused by the seizures made me think of David Axelrod and his family. If you weren't already aware, he is President Obama's Chief of Staff and his adult daughter has struggled with Epilepsy since she, like Noah, was 7 months old. He and his wife, Susan, who runs Cure (an epilepsy research charity) had talked about how awful it is each time your child experiences a seizure and you know it's doing more damage and making your child's job to recover one step more difficult.

Dr. Roberts said that he cannot predict the future but he thinks it will be more likely for Noah to always be behind his peers. What works in Noah's favor is that we have been aggressive in pursuing treatment for his seizures and therapy to help him compensate for his struggles. He only just celebrated his 3rd birthday and the human body can recover from so much.

Geoff and I were sad to hear the Doctor confirm what we were thinking; that Noah will probably always be in Special Ed and will need life time care. But really that doesn't change our plan: to insure Noah has as many opportunities to achieve everything he can.

Our Boy is doing Well

Noah is getting stronger every day. He is back to not really napping and getting himself around. We are so glad he's doing so well. We will keep you all updated after we speak with the neurologist (who's name I vow I will one day get correct).

What Noah had to deal with in the Hospital

Noah's Recovery

We were hoping to leave the hospital Wednesday, but we stayed until Thursday. Little Noah just couldn't wake up. With all the medication and the intensity of his seizure, he slept/was unconscious for 24 hours straight. Over the next 12 hours, he would wake briefly and then sleep a lot. Noah had to eat and drink before he could lose the IV. As the ICU doctor said, we couldn't take the saline bag home with us. Wednesday night, he finally drank some juice and Thursday morning he ate a pancake. Geoff and I felt very fortunate to take our baby home from the ICU, not all parents get to do that.

Little Noah's recovery has been steady. On Thursday, he could not sit up by himself. But he kept trying. He wasn't really able to walk until Saturday, but again, not from a lack of trying. Noah personified getting back up when you get knocked down. The last 2 days he is sleeping less (more normally) and getting around better. His Neurologist thought he may experience some temporary communications delays because his seizure was located in the temporal lobe which has a communication function for the brain. But he has retained his signed words and is still doing his true babbling.

We will meet with our Neurologist in the next few weeks to learn what he has about Noah. Noah definitely gave him plenty of information about his seizures.

Please all of you who emailed, Facebooked, or left us messages here or on our phones, know how much that sustained us during this really hard time. We really felt all of your love, prayers, and good wishes and it meant the world to us to know we had people who cared about us and our little guy. Thank you. Love, Amy

LIVE FROM THE ICU...I WISH IT WAS SATURDAY NIGHT!

Well, hear we are again. Noah is still heavily sedated and having a tough time working through the multiple medications, so the doctors thought it would be best to keep him for another day. He ended up having another seizure at 6:15, compared to Tuesday though, it was uneventful and short at 5 minutes.

Tomorrow is another day and another round in the fight. My prediction: Noah K.O.'s in the next round and is home and in bed by 6:00pm. A short posting tonight, I am exhausted and I have a long night of watching and praying for the fighter ahead of me. We will of course post again tomorrow to let you know how he is doing.

I want to end tonight with lyrics from a Jack Johnson song "Angel." Dedicated to the most beautiful and wonderful wife I could ever wish for. I love you Aimes!

_____________

I've got an angel
She doesn't wear any wings
She wears a heart that can melt my own
She wears a smile that can make me wanna sing
She gives me presents
With her presence alone
She gives me everything I could wish for
She gives me kisses on the lips just for coming home

She could make angels
I've seen it with my own eyes
You gotta be careful when you've got good love
Cause the angels will just keep on multiplying

But you're so busy changing the world
Just one smile can change all of mine

____________

Best,
G

Big Better Day at the ICU

Hooray! Today is a better day for our little Noah. After his massive seizure yesterday, he has not experienced another. He has just been sleeping off the elephant dose of medicines he received yesterday morning. At about 830am his ventilator was removed and they just officially removed the ventilator machine from the room which means everyone is confident he won't need it again. We also removed the electrodes from his head as the docs are pretty confident he won't have another seizure and his neurologist got plenty of information already.

Now we are just waiting for him to wake up completely and demonstrate that he can take some food. If he does that, we can bring home our little guy today. So, he's crusty and stinky, but doing much better.

Owen is also holding up pretty well. He's at a "swim party" at his Aunt Andrea's house today. Geoff has been sleeping at home with him each night and says Owen is having a hard time sleeping, but things should hopefully be back to good old normal soon.

Update from ICU

I promised an update last night and I failed to post it, but events today were so significant I am going to blend that with today’s post and bring you up to speed. The fighter took a really strong punch from an unrelenting seizure that grabbed him from 6:45am until 1:15pm this afternoon. He was staying at Doernbechers for a Video-EEG, this was a chance for our amazing neurologist Dr. Colin Roberts to remove Noah from his medication and hopefully capture a seizure on video and through monitoring the electrical activity in his brain during periods of seizures.

Amy and Noah checked into room 31, a small room with a bed for Noah and one for Amy. He was sedated and hooked up with electrodes, if he was out of the bed he had to have a backpack on to hold the equipment. Amy and Noah were under strict orders not to leave the room; a video camera had to be on them at all times. While Noah did not have any activity on Monday, today brought the largest seizure he has ever had.

Noah likes to play with some of the toys in his bed before being ready to jump out and start his day. He will often play with his bottle, banging it against the side of his bed, or crinkling the bottle. Amy woke this morning to a noise similar to that, after a few moments, she peaked at him from her bed and saw him face down, and in the grips of a seizure unlike anything we have ever seen. She followed her directions, marked the seizure by pressing a button on the recording device and called the nurse. A code alarm was issued and a medical team was brought in to treat Noah. After he began having difficulty breathing he was brought down to the ICU where a ventilator was brought in. At this point Noah was heavily sedated by multiple medications, all failing to stop the seizure.

Two large doses of Phenobarbital eventually ceased the seizure, nearly seven hours after it began. The strength of the dose will leave him knocked out until (most likely) tomorrow morning sometime. He will be slow to regain control of his faculties, but Dr. Roberts is fairly sure that no longer term damage has been done. He is a fighter, and the doctor and nurses have all commented on how hard he was working to fight against the seizure. It was the most trying day we have had, but Noah doesn't stop, so neither will we. Though this day was incredibly difficult, the good thing is that now Dr. Roberts has the information he needs to better isolate the seizure and develop a more appropriate and effective treatment plan.

This is an incredibly fast recap of what happened today. I wanted to just get something up because I know there are a lot of eyes on this blog waiting for updates. I wish I could be more eloquent in my recap but frankly, Amy and I are a bit numb.

I do want to add one thing. Doernbechers is perhaps the most special place I have ever been to in my life. In room after room, kids lay in beds fighting for their life. Some have cancer; others have tumors, heart problems, kidney problems, or like Noah, a traumatic seizure. They never give up. They never stop fighting, for many, a stop in the fight means their heart no longer beats. We owe it to each of those kids fighting to live that we honor them by living our life like we never have before.

In the room next to Noah, a child no older than 2 lay in a crib. She was surrounded by family, and in a chair next to her, an older gentleman played a harp while the family let her know how much they loved her. That little girl may not know a tomorrow; she may not know another sunset, or the end of that next song being played on the harp. So live today. Love today. Most of all, give the most loving embrace to someone close, and tell them how much you love them; you may not have another chance. You may not have another tomorrow.

Love to all, and please keep Noah in your thoughts. He is a fighter, and will wake up swinging.

Best,
G

Noah's Big Bad Day

We came in to Doernbecher Children's Hospital yesterday morning, as you all probably know already, to perform Noah's video EEG. After he was sedated, he had about 50 electrodes glued to his head and then he was tethered to a computer equipped with a video camera to record what he is doing as his brain is creating certain brain waves. Yesterday our big challenge was to keep our bored and annoyed toddler entertained. That all changed this morning.

I awoke at 6:49 am to what sounded like Noah crushing his bottle. After listening to it for a minute, I got up and quickly could tell he was having a seizure and that sound was his throat gurgling with unswallowed saliva/mucus/general ickiness. He was laying face down, so I turned him to his side, hit the button on the recording device to mark their tape and called the nurse. With many frantic medical personnel looking after him and the administration of 4 different medications he started losing the ability to breath on his own and the ability to cough which is critical to self-regulate his air ways. Meanwhile, he is still having seizures. About an hour or so has passed and the decision was made to move him to the ICU where they would intubate (a term I was already familiar with because they were always intubating people on "ER") him which would allow them to continue administering medications to suppress the seizures without concerns about it suppressing his respiratory abilities. In the ICU it still took until about 1:15pm to get enough medication in him to get his seizure to finally end. I was glad our neurologist has a gaggle of medical students and one stood next to me the entire time to explain everything they were doing and allowing me to ask her endless questions.

His doctor was terribly surprised and horrified that Noah had such a dramatic seizure while we were attempting the Video EEG. But he says now his EEG readings are that of a sleeping brain. He also said that if Noah experiences any lasting effects from this they will likely be short term. Noah is still on the ventilator just in case he has more seizures. But right now our plan is to keep him comfortable, and if he doesn't take a turn for the worse, we will remove the breathing tube when he wakes up, monitor him for more seizure activity and take him home. I think they have all the video footage they need to interpret.

My plan is to stay calm and just focus on the very next thing we need to do for Noah. I really think that kids look to their parents during a stressful/scary situation and if their parents are upset they are even more upset and frightened. I hope also that the opposite is true; if I project calm Noah and Owen will feel like things aren't that bad and everything will be okay. Because it will.

Noah's Accomplishments

Since my last posting was about Noah's goals and our concerns I think it's important to share also his many recent accomplishments. They seem to be coming along quickly for him in the last 2 months.

On July 3rd he waved good-bye to his Daddy. He has since consistently waved "bye-bye" which counts as another sign for him.

On July 6th Noah decided that yes, a spoon is easier than fingers to eat yogurt. He now will use a spoon for clingy food.

On July 26th with Geoff asking him to say "DaDa" Noah said "du, du". He will do it whenever Geoff asks him to say "DaDa" and two days ago when Geoff got home he said "du, du" looking at him without any prompting. When I ask for "MaMa" I get "ah, ah". It is so wonderful that he is now imitating more vowel consonant sounds instead of just raspberries.

On August 7th with a Hersey bar providing motivation he signed the word "eat". I have been trying to get him to sign "eat" for 2 years! Yesterday he signed it to me without prompting, and then I let him eat a whole roll of Ritz crackers to reinforce it!

Noah also has played side by side with peers for the last few weeks with little hitting or other inappropriately aggressive play. The neighbor girl, Katie is very relieved. I think the neighbor boy, Paul might have liked a wrestling partner though!

So, as we are getting ready to head off to the hospital to see if we can't figure out these scary seizures I think it's important to remember how far Noah has come and that he has accomplished so much. --Amy

Early Childhood Special Education

Yesterday was the meeting with the staff at Noah's school. Say what you will about most government/state run programs, but this one is amazing. Our 2 hour meeting was with his new teacher, our 2 old therapists, the new speech pathologist who will work with him, the nurse, and the head of the program. Noah's class will be for medically fragile children with a nurse present at all times.

We also got some sobering news as we do every time we assess Noah's current skill set; In tests to assess his cognitive, adaptive, social, communication, and motor skills where the average score is around 70%, Noah's scores are around 3%. We have a long road ahead to help our Mr-very slow-and-steady learner. It's when we test his levels that I worry about his future, I have to remind myself that we have to just focus on today and maybe tomorrow. Always looking at the little picture (i.e. not hitting, and learning more communication) as opposed to the big picture (will he ever be able to be independent?).

My Owie Bear

Raising Noah requires endless thought into focusing on his learning opportunities, doing therapy exercises, policing his behavior, and worrying over his general health. Where does my sweet Owie fit into all of this?

I know everyone's child is special in their way. Owen's way is that he is so kind and helpful. He actually won a trophy on the last day of school for being the best helper and most congenial in his class. His Uncle Shane calls him the oldest 5 year old he's ever seen.

These qualities make Owen an especially terrific big brother. He praises Noah's accomplishments and is fairly patient about Noah bulldozing through his toys. These qualities also make him a great helper to me. He loves to vacuum and cleaning windows is one of his favorites. He told me yesterday that he needs to get a new broom to sweep the house.

These same traits however make me concerned that Owen won't speak up if he's not getting the time and attention he needs. He is only 5. He understands a little that Noah has health problems that mean he goes to the hospital a lot and make it harder for him to learn. But how can any kid understand how Noah's issues mean he takes up so much more of my time than I have for him? I try really hard to be aware that Owen is just 5 and to take time every day for just he and I to do an activity. Geoff spends a lot of time with Owen, so I think Owen gets enough "parent time". But I miss him. I don't want to miss a minute of Owen growing up. He is such an amazing kid. Owen is off to kindergarten this fall and he's becoming a big kid too fast. I want more time to ride bikes with him, read stories to him, play garbage trucks with him. I just need to find more time. --Amy

Getting Noah Ready for School

On Wednesday we had a transitional meeting with Noah's physical therapist, Kelly, and Speech Pathologist, Jean to discuss our little guy attending school all by himself this fall. This will entail riding the bus and spending 2 1/2 hours in a classroom without me. This is sort of exciting and scary all at the same time.

On the plus side I am curious to see what Noah can learn without me there to help him. I try really hard to make him do things for himself, but I am his mother and may be making things easier for him when he needs the challenge to learn. I think he'll enjoy a classroom with other kids his age (to hit). The teachers are all therapists and will be working with him to address his specific needs. He has never had twice weekly therapy and that can only be a good thing.

My concerns include that he doesn't yet talk. He signs a mean "more" but that's about it. Will his teachers have the time to decipher his non-verbal clues? Will his teachers be able to control his excitement that sometimes (most the time) bubbles over to hitting other people?

Kelly and Jean say they have both worked with other children who didn't have Noah's skill set and they thrived at school. And they would know right? So, we are getting ready to say good-bye to our two at home therapists, Kelly and Jean, who have given us so much support and attention. They have worked with Noah since he was a year old. I don't know about Noah, but I am going to miss them being his cheerleaders for each and every little accomplishment Noah has made. Now my big (nearly) 3 year old is off to school!

Noah in the grass

Fun day at the Park

Home at Last!

After 3 1/2 weeks out of our house, we are finally home! The construction on our home is still not complete, we had painters here on Friday, cleaning people here yesterday. We are still waiting (and waiting) on the electrician, fence-guy, and landscapers to help bring this disaster to a close. We hope by the end of this week. The good news is we have walls again and air quality tests came back clean. So, no toxic mold for us!

Noah is happy to be home. Our first day back he just sat and played in his bedroom for about 2 hours, by himself, completely content. He had a bad day on the 4th, with 8 seizures. That is a record for the most in one day. He didn't even have a chance to eat. He'd have a seizure, sleep for 45 minutes, wake up and in 20 minutes, have another seizure. We took him to our neighbors' to play in their pool and he did that for about 5 minutes and then just wanted to sit in my lap (all wet, of course).

On August 17th Noah and I will be checking in to the hospital for 3 days for his video EEG. I am trying to line up lots of visits to pass the time while we are there. Did I mention there is a Starbucks in the lobby? So, if you need coffee anyway why not just come up Pill Hill to get it? And the sky tram? Remember that? It goes right up to Dornebecher Children's Hospital. That's fun right?

I'll keep you all updated and promise to be a better blogger now that we are home, I promise. --Amy

Noah at the Race

Team Noah's Noggin

NW Epilepsy Foundation Run/Walk

Yesterday was the run/walk we have been harassing all of our friends and family to participate in with us. Thanks to every one's support we were the team with the most runners, most individual donors, and placed third for total amount donated! The rain even waited until the race was over to dump. Your donations went to an organization that supports epilepsy research and funds a summer camp for kids with epilepsy so they can have a regular childhood experience despite their medical issues. We were so happy and proud to have your support. So, here is to going even bigger next year! Love, Amy

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