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

big day.

Today is the day. I was given the "ok" yesterday to start weaning Pin off topomax, a med she has been on since June 2010. We are beyond thrilled and I'm really nervous. We want her to remain stable as her meds decrease. Six pills, dropping one a week, over six weeks. This is the best Christmas gift we could ever receive.

Please pray she will continue to be seizure-free and that development will blossom after the removal of this med. Her neurologist calls it "dopomax," as it calms and slows EVERYTHING in her body. It effects balance (she is 19 months and still not independently sitting), taste, etc...

Thanks for caring for us. I will keep you posted.
Xoxo.

longest stretch ever. fewest meds ever.

On November 5th, Pin crossed her FOUR month mark of being seizure free. I purposely didn't want to make a big deal of it, but all day I was secretly rejoicing in my heart. She has been doing SO well, seems very stable and is on the least amount of medication that she has ever been on. As of today (after a six-week ween), we successfully cut her spasm medication to half the initial dose. We are super grateful to have her on less medication and pray this continues.

Jer and I are still not totally "back to normal" yet. There is MUCH more laughter around our house now, playing together and going out as a family, but I continue to feel the stress from the day in/day out pressures of working with Pin developmentally. I also have been haunted by dreams at night that have me reliving those first few months. I know time and the Lord can heal those scars and memories and for now, I'm thankful for a husband who lets me share my feelings day or night. I'm thankful for friends that let me too. 

We love you. 

S.

happy ELEVENTH birthday, cousin maddie.

aquatic therapy.

sitting up...little by little.

trick or treat.

therapy camp.

Pin and I had just lived through a life-changing experience: Intensive Therapy. Over the course of the 5- day week, Pin had a physical therapist, occupational therapist and speech therapist that worked with her specifically for 20+ hours. Brenda, Heather and Daniela poured every ounce of energy they had into Pin and equipped me with tons of "at-home" ideas, suggestions and resources. I came home energetic and BEYOND encouraged. Jer instantly noticed a change in Pin's mobility and vocalization. We have tons of hope and are really starting to enjoy being parents.

The biggest piece of overall advice that was given to me was this: Pin needs MORE. More stimulation, more stability with her posture, more kinesthetic awareness, more arousal, more synergies of movement, more initiation of movement, more somatosensory input, etc. The medication that Pin was/is on has slowed her body down SO much she needs MORE than the average kid to get her going. She needs stronger tastes (they fed her pickle juice and she barely winced!), more swinging, bouncing, and rough-play, more noise and more of LIFE in general. Living life BIGGER seems overwhelming but I'm choosing to incorporate small things into our daily living. At the grocery store today, I bought whipped creme, chocolate pudding and a box of cherry jello for our "food play" time. If I make it fun, it won't seem like therapy. Right?

The best part of all of these delays, is that we think she can catch up. There is no reason for us to believe she can't. We have never been told "pin won't walk, pin won't talk, etc." The hardest part about a seizure disorder is getting the seizures under control and by the grace of God, that has happened. With lots of work, play, patience and most importantly, prayer we have every reason to think Pin can lead a normal, healthy life. Brenda, Pin's PT, kept saying "she is college material." 

Until then, I will be playing hard and LOUD with Pin. If anyone wants to come play with us, let me know. We are the house with the strobe light and head banging music. 

Xoxo. 

Steph