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.

window seat.

high five.

richmond bound.

We have an upcoming adventure...We are moving. Jeremy was offered a new position several weeks ago and he accepted. He will be starting on March 19 as an Equity Research Analyst (for a mutual fund) in Richmond, Virginia. He has been searching for over 2.5 years for his 'dream' job and all his hard work paid off. I am really proud of him and we are really excited to move (of course, leaving our friends and family in Chicago is so bittersweet).

We are thrilled to be only four hours away from my family and seven hours from Jeremy's family in Connecticut. The ocean is an hour away and DC is a short 100 miles. We have already started looking at homes (via the internet) and this Friday, will see them in person. We will be buying a house with a guest bedroom (or two) and our doors are always open. Please know I LOVE house guests.

I will report back on our house findings...
Xoxo.

pin's dress up session.

To view Pinny's photo shoot: click here 

my 8o's kid in neon.

favorite video.

helmet results: better than before, but not amazing. regardless...i love her.

creme puff.

update.

Overall:

Pinny is doing great. So are we. Yesterday marked seven months of no seizure/spasm activity and we are beyond thrilled. She is on the least amount of medication that she has ever been on and even that med we reduced to half of the initial dose. Pin is getting stronger, steadier, faster and growing more into her fun personality. We have a LONG way to go to catch her up to age level, but we are SO grateful for her progress so far. Little by little we will get there. 

Therapy:

Our weekly schedule looks like this:

Monday: Developmental Therapy

Tuesday: Aquatic Therapy

Wednesday: Speech Therapy (focus: rib cage molding) and Chiropractor

Thursday: Physical Therapy

Friday: Speech Therapy (focus: speech production and feeding)

We have a full schedule but are so blessed by the amazing people we have met and for their love they have shown to Pin and us.

Neurology:

We met with Pin's neurologist last Friday and he was so excited for us. He said again, based on Pin's initial EEG (7 days old), the way that she is faring is abnormal. She is doing better than they ever expected and said it is again, very possible that she is completely outgrowing her seizures. Dr. M explained that after a person is seizure-free for two years, the seizures will typically never return. We are praying toward that end.

Helmet:

As of today, Pin has "graduated" from helmet school. She is finished and now I don't have to schlep that thing around everywhere. One milestone down. 

Jeremy & I

Ahhh. Life is becoming more normal and so is my heart rate. I no longer pass a "landmark" where Pin had a seizure in the car and break down crying remembering 'when'. I still get a little nervous when she falls asleep in the car but I'm doing better. I am working out again and trying to lose the stress weight that I put on. Jer is doing great and has some exciting adventures ahead (work related) for him. He continues to be an amazing husband, father and provider for both Pin and me. Pin smiles so big when her dad walks through the door at the end of the day. 

Thanks for caring...We love you all. 

Xoxo. 

S. 

fun girl.

another great article about perspective.

http://www.qideas.org/blog/to-cade-and-the-eight-percent.aspx

visit with great grammy.

pin pin.