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.

don't carpe diem.

I read this article last night at 2 am. Pin has been waking up lately and having 'personal parties' in her crib. Last night, she invited me. How kind of her. 

Upon reading it, I immediately emailed it to a few friends that I knew would appreciate it. One relied fourteen minutes later saying, "I wish I had written it." Another friend called me from Minneapolis this morning to discuss it, another emailed the author herself saying "thank you for putting into words what I and so many others feel!!!"

Here is the article:
http://www.huffingtonpost.com/glennon-melton/dont-carpe-diem_b_1206346.html

Let me know what you think.
xoxo.
S.

laughing girlie.

'my future's so bright, i gotta wear shades.'

december 25. revisited.

today...six months seizure free.

first polish: neon pink

2014 pinny.

I spotted this lil' girl on Target's website. She looks a lot like Pin. 

meeting with geneticist.

Yesterday, we met with Pin's genetic counselor and geneticist. I am thrilled to say that nothing significant happened at the meeting... no blood was drawn, no tests ordered, no "future" appointment was made. Her geneticist thought she looked great and was so pleased with her progress. We are too.

Of course, we did have 'something' happen. We were given ANOTHER hospital toy. As you can tell, Pin is getting pretty serious about these gifts. I mean, putting on a hospital gown should be rewarded somehow.

xoxo.

five months.

Today, I am rejoicing (and NOT just because it is 'Hug an Armenian' day). Pin has been seizure-free for 5 months today. Once again, this is the longest stretch and on even fewer meds than last month. Tomorrow is another topomax wean and she still remains very stable (despite having a major cold, even). We are so excited and beyond thankful for the constant encouragement, prayers and love from friends, family and total strangers.

With much gratitude and thankfulness,
Steph