Encephalitis does a Brain Harm

My son was born in April 1993. I had a normal pregnancy until the end when he did a u-turn and got himself stuck in the breech position. This resulted in a Caesarian delivery. He was so tangled up in his cord and his head was stuck under my diaphragm. The doctors wrestles him out and my husband and I were the proud parents of a son. what and adventure this boy would take us on.

Seventeen days after our son's birth he would be hospitalized for viral encephalitis. He would spend three weeks at the local children's hospital for treatment. The prognosis was Grim. I can still remember the pediatrician I had chosen calling us by phone at the nurses station to break the horrible news to us.

A neurologist came to speak with us. He was matter of fact and pretty realistic bout how things would go for our son during his stay. To have him tell us he was likely to be disabled from the illness was a blow. But like many parents you don't want to believe that about your child.

F developed seizures during that first night. He nearly coded. They started him on anticonvulsants along with an antiviral drug. He had a feeding tube places through his nose to his stomach because he'd stopped eating. As the antiviral drugs began to help he became more and more stable.

He was released from that hospital ray on Mother's day. What a gift that was. We took F home. When I think about how naive we were then. That first illness didn't really prepare us for the road ahead. There would be many more challenges to come.

Starting with the crying…all that crying! It pierced my heart and my ears! I used to call the neurologist be cry that my son NEVER slept. If he did sleep he'd startle himself awake. Little did we know that was a seizure called infantile spasms. This was an extremely challenging summer. After starting steroid injections for the seizures and changing medications the crying improved some.

F had sensory issues and back then no one really addressed them with us.  We'd notice certain sounds and environments were challenging for and overwhelming for him.  Looking back he needed a sensory diet to help his nervous system.  We would learn about sensory diet many years later have F suffers a femur fracture and do to being unable to get out of bed, pain medications, and probably the whole traumatic experience he began showing symptoms similar to those when he was younger.  An occupational therapist would explain to us it was sensory overload and taught us the sensory diet.  It really worked to.

F prior to his first birthday will also have surgery for  gastrostomy (g-tube) placement, nissen fundoplication, and pyloroplasty.  All to help with feeding and pneumonia related reflux.  That was a tough procedure, but we got through it.  This first year was hard and challenging, but when I look back at it I'd say it was hard and challenging because you get placed on a fast learning curve and your just naive new parents doing the best you can with a unique child so unique you meet only one family who has one similar in ability, lack of.

In a nutshell, looking back that first neurologist, who I still call my friend, painted the bleakest picture possible for F's future.  He turned out to be absolutely correct about most things.  Life is challenging for F.  He is SEVERELY disabled.  He is however "nerd" smart as his paraeducator puts it.  He is an untapped resource and if he had expressive language that could pull some of that amazing knowledge out of his head who knows what could be possible.  You just never know what life will give any individual.  You just never know what life will give any of us.  F is an inspiration and I can learn daily from his example in patience, forgiveness, and compassion.  I sure love that kid and would trade most of our experiences together, not even that traumatic first year.

January's Half-marathon

I needed a running goal since I've been such a slacker when it comes to my running and fitness. I signed up for the virtual Nike+ Women's Half-Marathon on 1/15/12. Which meant I'd train and run the half using my Nike+ GPS running app on my phone.

During the training process I used the app. I liked it. It's fairly accurate. I'd say my only complaint is when I wear gloves on cold days it's hard to start and stop. It would be nice if it had an auto stop feature like my Garmin. I run with my dogs and they require more water stops than I.

Race day came. The dogs and I headed to the American river bike trail. We ran our half together. I knew that Rocky (the standard poodle) would easily pull off the distance, but wondered about  little Lilly (puggle, pug/beagle mix). They both did amazing. With water and potty stops we did a 2:10 and change half-marathon. These dogs have been great running partners and I appreciate their company. I've included a photo of them. They didn't cooperate as I would have liked them too. One thing is for sure they don't look like they just went 13.2 miles with me.

My reward from Nike was a bracelet made by Hurley. It came in the mail past week. I'm going to admit I was slightly disappointed. I'm not sure if it's because I'm not a fan of the colors or because I can't really figure out how to put it on. I'm wishing it had come with instructions.

My best reward is automatic entrance into the 2012 Nike Women's Half-Marathon in October with Team Victorious.


written in January 2012

Did I ever tell you how much I HATE suprises?

So my dear friend, who is like a sister to me, is trying to surprise me today.  I love that she wants to do something nice for me, I really, really do.  There's just one thing she won't tell me what we are supposed to be doing and I HATE surprises.  My experiences have reinforced over and over again that my surprises are rarely, if ever, good ones; therefore, I hate them.  They make me uneasy and anxious.

Surprise example number 1.  R tries to throw me a surprise party for my birthday.  F ends up sick and hospitalized with pneumonia.  Surprise example number two plan a vacation and your husband gets pink slipped at his county job (no vacation!).  My list could go on and on.

She wants me to dress comfortably and bring comfortable shoes. You know... this is defined differently by each of us.  Not only that I'm going to be gone ALL day on my only Saturday that I had to spend most of the day at home.  Part of the problem is I'm rarely home.  I can't get my head above water on laundry, housework, blogging, etc. because I'm only home for a few hours and I can't get anything done that requires a good chunk of time.

What I'd like today is a number of things.  Wash my dog so I can cut his hair tomorrow (standard poodle).  Go to the library.  Get in a 10 minute fat burning workout.  Do laundry.  Change the sheets.  Get my math worksheet done.  All those things that have just piled up.  Maybe even watch a movie with the family before I go get my hair done.

I need more hours in my day!

Just trying to keep my head above water...

I know I keep abandoning this blog.  I don't mean to.  Thank you, Lee, for reminding me I have one and for your kind words.  Your words were honestly an answered prayer that day.

I'd like to catch everyone up on all that's going on, but honestly I'm simply just overwhelmed by my life.  I know many people in my life think I'm strong and I can handle everything, but I've kind of had my limit recently.   I'm not super mom.  My marriage is crumbling and I'm coming up on the 15th anniversary of Cienna's terminal diagnosis, her 18th birthday, and the 15th anniversary of her death are around the corner.  Right now I'm just telling myself "fake it until you make it" when really I'd like to curl up in a ball in my warm bed and just cry.  I'm also wondering what the hell I was thinking trying to train for a marathon that is December 2.  I've got a 20 mile training run on my to do list for Monday and I barely have the energy to function.  Really... what WAS I thinking?

I'm just praying for God to ease my sad heart and help me through this challenging time.  Grief sucks!  I miss my daughter and all the memories and milestones we should have had together.

Just trying to survive the day.

F is doing great.  He registered to vote and is super excited about the election.  I'll try to write about that later.  I couldn't be more proud of him.