Sunday, April 24, 2016

He came with an entourage. 

We spent four months in the hospital with him - more time in than out. 

When we lost him, we also lost a community - a full village of folks who know exactly what it is to love someone who might not be there the next day, who know how special and unwasted each day can be, who know that you hurt and love because they do too, and somehow they have chapters of vocabulary that none of the rest of the world do. 

They get it. They smile. They understand. They hold. They hug. They share. They laugh. 

I miss him so much.

And the people who knew him best feel  far away. 

That can be remedied.
He came with an entourage. 

We spent four months in the hospital with him - more time in than out. 

When we lost him, we also lost a community - a full village of folks who know exactly what it is to love someone who might not be there the next day, who know how special and unwasted each day can be, who know that you hurt and love because they do too, and somehow they have chapters of vocabulary that none of the rest of the world do. 

They get it. They smile. They understand. They hold. They hug. They share. They laugh. 

I miss him so much.

And the people who knew him best feel  far away. 

That can be remedied.

Friday, April 22, 2016

Things to be careful of in these times..

 - Tattoos (wait at least a month?)

Felix Arthur Henry was born October 11th, 2015 and he passed away, in the small of the morning, in the wee morning hours, at 1:34 a.m. April 17th, 2016.

He waited until it wasn't his dad's birthday. And he waited for his dad to arrive.

He sneaked out when I asked that his NJ tube be removed. When I asked, my brain didn't realize (I knew, but didn't have the with it to put it together) that it mean the WHOLE NJ. A towel was grab, the pull was started, I looked away, and he was gone. Tricky, lovely, beautiful kid.

He was born by C-Section, after a very easy easy pregnancy, three weeks early. He was 6 pounds 6 ounces (the second 6 pounds 6 ounces Felix to be born at that hospital that day!). His face was my grandpa Rauch's and I wondered how I supposed to nurse that.

It worked! He nursed and latched almost right away. He was beautiful and calmed and cried and calmed.

I was spoiled at the hospital. Pierre was going through a hard time. Oscar was 2.5 years old and loud. PG was constantly tired. I didn't know what we were going to do with a second baby. He would come to hospital stressed and when he'd leave, I'd feel worse. It wasn't fun. The hospital was my hiding place, to stay with just the baby. I cried, I mourned, leaving.

Things went on. I would take both children to Oscar's daycare, when I was finally able to drive. Certain teachers would ask that I not leave Felix on a table (in his carseat), because the other kids might mess with him.

Oscar wasn't really interested in Felix, except for threats to bang on baby, until the other kids at daycare said how cute Felix was. And then it was "That's my baby." "That's my baby Felix."

Sunday, December 27, 2015

Timeline summary


*** Thanks for starting this! The timeline below is a bit dry, I just want to jot down the main events. Feel free to add. Of course I also want to post more about how Felix is doing!!! ***

Dec 9 : first "seizure". right leg and right arm. eyes looking to the left.

Dec10: consult with Dr. McDonalds

Dec 11: 30min EEG. Normal.

Dec 19: several new episodes. Going to ER. In hospital from Saturday to Monday (6th floor). MRI and 20 hr video EEG, all normal.

Dec 24: back in ER. Felix had numerous episodes since the previous night (~15). Episodes getting longer and more frequent.

Dec 24-27: PICU. 48 hr EEG. Nothing abnormal, except a few short times. Blood tests normal. lumbar puncture normal. ammonia nearly normal (a bit high, 54).

Dec 27: back on 6th floor. Drawing blood for testing for ~20 genes.
Doctors are puzzled. "your child is a mystery"

Welcome!

The start of Felix's adventures in getting better...

FIRST SPELL
Tuesday Dec. 8th - Notice eye twitching. Dismiss as "something in the eye", and attempt to wash it out with a wet wash cloth. 

Wednesday Dec. 9th - First seizure. Right side has synchronized jerking movements, which then move to his left eye

Thursday Dec. 10th - Visit with Pediatric Neurologist Dr. MacDonald

Friday Dec. 11th - Short EEG, all normal!

SECOND SPELL
Saturday Dec. 19th - ED visit. Admitted to hospital, 6th floor

December 20th PG update
Baby Felix had second partial seizure in two weeks. He is fine and so far all exams, including MRI, are normal. He is having a 24hr EEG in the hospital tonight (with Jen staying with him). Hopefully this will turn out ok.

Saturday Dec. 21st 
Felix just came home. He is in good spirits in spite of having 30+ electrodes stuck on his head for 18 hours! Just some marks on his face and a few patches of hair missing. The doctors didn't find anything abnormal that could explain the seizures. MRI is normal, EEG is normal, neurological/clinical exam is normal, French humor is normal. We hope this will resolve on its own. We'll see how it goes in the next few months. Thanks to all for the support and love!

THIRD SPELL
Wednesday Dec. 23rd - Notice eye twitching. Seizures happen every 30-45 minutes, all focal (as far as we can tell), all under 2 minutes long

Thursday Dec. 24th - Seizures continue very 30-45 minutes, all under 2 minutes long.
3 p.m. Time between seizures becomes shorter, seizures become longer, notice blueness in lips

Thursday Dec. 24th
Felix is back in the hospital after many more seizures today. Jen and Felix will spend the night there. Thinking Chinese takeout for Xmas eve dinner...