unconditional love.

this is a job for a professional organizer.

In the 90's, I had a small professional organizing business (see business card). I worked in closets, kitchens and even helped people electronically "retrieve information." I still LOVE organizing my life and all its contents. I am actually a little intense about everything having a "space" (see PAPER cabinet, PARTY cabinet and WRAP cabinet).

But, I will soon take on the biggest (and most-important) organizational job of my life: my daughter's nervous system.

I heard of Nina Jonio a week ago, chatted with her on Monday and on November 8, Pin and I will head to Raleigh to meet her in person. She is based in Portland and is a Neurological Re-organizer. Nina meets up with all her clients in various cities, every three months, on appointment "tours." She is experienced and successful and has tons of HOPE for our little Pin. And boy, do we love hope.

Here is a lengthy, but very informative overview on Neurological Reorganization: https://vimeo.com/45993430


xoxo.
s.

a holistic hope.

April 2011, a college friend who was following Pin's story, asked if she could contact me. She called me shortly after and began to share her story of Oral Systemic Balance. Her body, a very busy homeschool mom of six, had had it. Worn-down, anxiety-filled, she set out on a two year quest trying to get answers. Her journey ended when she met a radical dentist (go figure) in Tacoma, Washington.

He took one look in her mouth and declared that her tongue was blocking her airway and wreaking havoc on her body's systems. With much skepticism, she thought she would give his belief and procedures a 'try'. Her success and the countless other stories she witnessed while sitting at her appointments, led her straight to us.

I called that dentist's office that same day, a year and 7 months ago. I spoke several times to an admin whose daughter had seizures and now is seizure-free, thanks to that dentist. The admin sent me two names of dentists "in my area" that were familiar with this procedure. One in River Falls, Wisconsin and the other in Fredrickburg, Virginia. 

I thought about Pin and the observations I made early on (day ONE of life), how she hated things in her mouth. She refused a paci, her suck was weak, etc., to me it almost seemed like a defense mechanism.

I was dead set on trying OSB for Pin. But the timing wasn't right. 

Jeremy wasn't on-board. We lived in Chicago. And Pin was unstable.

Then, a year and a 4 months later, after searching nation-wide,  Jeremy got his DREAM job in Richmond, Virginia. A short 55 miles from Fredricksburg and all the pieces fell into place. 

Last week, Pin started Oral Systemic Balance. 

update on life.

I will make this short: the past six months have been a living hell. 


It all started in April when Pin's movements came back. I freaked out.

I was "on-duty" full time (Jeremy was in VA already) all while trying to pack our entire condo, wrap-up therapists & doctors and say goodbye to our closest friends and family.

A quick overnight hospital stay in Illinois and "more" medicine offered no more insight.

Then, we moved.

We bought our first home. It is 109 years old. She is a beauty...full of personality and charm but needs some serious botox. And probably a "lift and tuck" but, who doesn't?

More medication. More movements. More medication. More movements.

Then, an ER visit and three-day hospital stay in North Carolina. I freaked out again, literally YELLING AT DOCTORS THREATENING TO YANK MY DAUGHTER OUT OF THE HOSPITAL WITHOUT DISCHARGE PAPERS (clearly, I am the one who needs the meds). Then, an at-home EEG in NC. Finally, movements were caught on the EEG and we were told they "were not seizures." What?

Then, my amazing grandma died.

Then, an ER visit and two-day hospital stay in Virginia. Again, movements were captured but had no epileptic correlate. More freaking, more questions.

In three hospitals, in three states, I begged the Lord that He would show grace and mercy on us. I pleaded with Him that He would not have us walk down the "infantile spasm" road again and that they would ONLY be "seizures." He did one better:

ACID REFLUX.
(apparently our daughter has a bad case.) 

A GI study last week confirmed this information and we are now pulling off seizure meds and upping antacids.


To say we are THANKFUL (and in need of a tan), is an understatement. We are beyond grateful for the Lord's kindness and love towards us. We still question, we still are disappointed, we still have pain BUT we still pray, we still have faith and we still believe there is a God who is good. So, we still wait.

Xoxo.
Steph



I NEVER did go on those meds and I'm happy to report I'm still as crazy as ever. 

someone invite me somewhere so i can get this.

grove avenue (so far)

pin's room (so far)

things i love right now.

elaborate cardboard arcade.

sweet video of a boy. and his dream.

http://cainesarcade.com/2012/04/caines-arcade-short-film/

easter with cousins.

new shoes: natives.

boo boo bags: mama and bebe.

nine glorious months seizure-free.

fun with cousins in north carolina.

playing with stickers.

parties.

pin + pei wei.

lecrae tweets.

I follow the Christian rap artist, Lecrae on twitter. His powerfully, thought-provoking tweets often stop me in my tracks. Here are some of my favorite recent tweets:

-"If we aren't grateful what we already have, why do we constantly ask for more?"

-"Make plans today, but remember plans don't accomplish things, God does."

-"When your expenses are lower than your income, your stressing decreases. And when your car breaks down, you don't."

-"You can impress people from a distance, but if you want to impact them, get up close."

EEG results.

The short answer: Pin's brain is getting better but it is still abnormal. I bawled. Jeremy smiled.

The long answer: We met with Pin's amazing neurologist this morning. He spent 1.5 hours with us. He is kind, gentle, wise beyond his years and full of hope for us and Pin. Her EEG is still abnormal but it IS improving. I was so disappointed, Jer was so happy (how can men and women be so different?).

I am disappointed because I WANT a daughter with normal brain activity. I work so hard with her and am seeing progress but it is slow. She will be TWO next month and still not independently sitting. She is 100% dependent on me and frankly, it is tiring. Very tiring. But, more than wearing me out, I want it for HER. I keep forgetting where we have come from...she used to have 20+ seizures a day and now, she hasn't had one since July 5, 2011. I have MUCH to be thankful for...but sometimes I forget.

Jeremy's response was based on the fact that we are seeing continued progress...moving slowly, but we ARE moving. He was not surprised by the abnormal EEG (maybe we should have talked about expectations before our appointment). He knows it takes a long time for an EEG to normalize....people can be displaying normal behavior for years and still have an abnormal EEG. He knows the best sign of brain function is the daughter in front of us- her eyes are brighter, her interest in the world around her is greater, her desire to crawl, to reach, grab, etc... is more of an accurate sign of the health of her brain. Maybe I need to listen to him more often. Maybe.

We are starting to wean her off her final medication tonight (it will take 2 months total) and are adding a low-dose of Kepra on Monday for good measure. Irritability/crankiness is the greatest side-effect and frankly, Pin could benefit from that. She is a ridiculously happy kid.

Thanks for reading this whole thing, and caring.
We love you...
S.

routine EEG.

We just walked in the door from a trip to Richmond, VA and Winston-Salem, NC. We had a great time house hunting in Richmond and hanging out with family in NC. No home purchase was made but I think we are really going to love living in the south. At the very least, the weather is amazing.

Tomorrow, Pin and I head down to Children's Memorial for a routine EEG. We requested she have one before we transition health care to doctors in VA and so we can have a new baseline. I am nervous but I don't think I need to be. This EEG is 4 to 6 hours long (thankfully NOT an overnight) and I know the routine so well....only this time I need to keep her little hands busy with toys instead of grabbing at all the cords on her head. Not a bad problem to have seeing her system is waking up more and more to the world around her. We are so grateful.

Pin's last EEG was in the beginning of August 2o11 right after our horrific summer of getting her spasms under control. We know this one will be much improved seeing she is on the least amount of medication ever and we are almost to the 8 month mark of no seizures. We again are SO grateful.

Will you pray tomorrow goes well?

We love you.
S.