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.