EEG results.

Jeremy & I just got off the phone with Dr. Chung and we were thrilled by the news she told us. AMAZING news. Pin's EEG results shows major, major improvement in both wake and sleep-continuous activity with no sharp spikes. Almost that of a normal child, we were told.

She did have a seizure while hooked-up so we will keep her on her meds. We are hopeful her seizures will disappear over time and praying toward that end...

We are praising the Lord who not only hears prayers, but answers them.

Thanks for your friendship and love.
Steph

all went well.

well, we made it 51 days.

The counting has stopped but we choose AGAIN to be so thankful for this wonderful stretch. Pin is growing and changing in many ways. She still has delays (according to the developmental therapist she is 30% behind) but we are seeing her make connections to the world around her.

We had an appointment with the neurologist last week and requested a follow-up EEG. So, tomorrow Pinny will have a sleepover (with my mom) at Children's Hospital. As always, we covet your prayers...

Prayer Requests:
-The EEG will show GREAT improvement.
- Pin will be a good patient now that she is older and more aware.
-Seizures would STOP for good and a complete healing would happen.
-Jeremy and I (and our families) would not lose heart.

Thanks for praying & loving us all so deeply-
Steph

still counting....day 46

3o.

I'm no longer holding my breath. Now, I'm just freaking out. 3o glorious days & counting.

This is my favorite Christmas gift of all time.

25 days.

Why do I always write when Pin is in 'seizure-mode' (or in this case almost 'seizure-mode')? She woke up not totally acting like herself (she is teething) and her body wanted to have a seizure, but didn't. I am on-edge now and will be anxious all day. I have her door cracked as I fold the laundry outside her room watching her sleep. I have canceled all plans, showered but not 'gotten ready' and am eating for the first time right now- croutons and a piece of string cheese (which I am now unable to locate). I am freaking out and holding my breath at the same time.

You see, today is day 25 of NO seizures- her longest stretch ever. She is getting better. So are we. We have hope, we see change and can't wait to turn our 'mental' calendar to another year. But, I am nervous. I want day 25 to turn into day NEVER AGAIN. I don't want to be disappointed.

As I sat watching her I heard a gentle reminder, "Cast all your anxiety on Him because He cares for you" (1 Peter 5:7). Then a call came in- a friend's dad has cancer and then I got a text- the son of a friend is dealing with major health issues and things have taken a terrible turn for the worse. Many heavy hearts today and people facing difficult times and yet the Lord longs to take our anxiety. How does He do it? Why does He do it? I don't understand, but He can have it. He can have the anxiety I feel about her physical development, her future, the nervous feelings I get when I drive with Pin alone and all the rest. So, what do I do? Trust Him. For everything that concerns me today. And tomorrow.

I'm trying.

xoxo.

s
(I looked down and my croutons were all gone. I still can't find my cheese. Maybe I ate it.)

tis' the season

pin today.

common theme and prayer request.

A few weeks ago I was feeling so overwhelmed by the common theme told to me by all of Pin's therapists. "She needs to right her head" is what I hear again and again. I work SO hard with Pinny at home and it seems so beyond my control to teach my daughter a reflex that should come naturally.

I was wallowing in my pity when a text came in. It was from Lisa Wells (my dear friend who introduced me to Jeremy) whom I hadn't talked to in several days. It simply said, "But you are a shield around me, O LORD; you bestow glory on me and lift up my head (Psalm 3:3)."

I looked at the text. Then again. Then again with tears. Then again with a new understanding: The Lord is the one to do the work and I need to try my best but wait on Him to "lift her head." Then again with a humble heart at how personal our God is.

Will you join me in praying this for Pinny?

"Lord, lift Pinny's head."

xoxo.

our baby.

hello. again.

Well....here we are again. We have had another 2 week stretch of no seizures and just as we were celebrating another milestone (14 days!!!) they came back again. Today. I type this in her room, watching her sleep. She is totally worn out. So am I... emotionally speaking. I am ready for them to be gone forever. I keep hoping the "last one" is truly THE LAST ONE. But, I will choose to not lose heart.

In the past 6 weeks, Pin has had around 15-20 seizures. She used to have that many in ONE day. We have much to be thankful for and we are still hopeful she will outgrown them. I just wish it would happen today.

the counting has stopped.

A bit of a set-back day, but we WILL NOT lose heart. I woke up and read Psalm 139 not knowing what the day was to hold. The Lord ALWAYS shows up. He provided a friend to love on us and His Word to get us through. My prayer continues to be the same..."You made Pin in my womb, now complete her outside my womb."
Xoxo-
S. 

Psalm 139
 ¹ O LORD, you have searched me
       and you know me.
 ² You know when I sit and when I rise;
       you perceive my thoughts from afar.
 ³ You discern my going out and my lying down;
       you are familiar with all my ways.
 ⁴ Before a word is on my tongue
       you know it completely, O LORD.
 ⁵ You hem me in—behind and before;
       you have laid your hand upon me.
 ⁶ Such knowledge is too wonderful for me,
       too lofty for me to attain.
 ⁷ Where can I go from your Spirit?
       Where can I flee from your presence?
 ⁸ If I go up to the heavens, you are there;
       if I make my bed in the depths, you are there.
 ⁹ If I rise on the wings of the dawn,
       if I settle on the far side of the sea,
 ¹⁰ even there your hand will guide me,
       your right hand will hold me fast.
 ¹¹ If I say, "Surely the darkness will hide me
       and the light become night around me,"
 ¹² even the darkness will not be dark to you;
       the night will shine like the day,
       for darkness is as light to you.
 ¹³ For you created my inmost being;
       you knit me together in my mother's womb.
 ¹⁴ I praise you because I am fearfully and wonderfully made;
       your works are wonderful,
       I know that full well.
 ¹⁵ My frame was not hidden from you
       when I was made in the secret place.
       When I was woven together in the depths of the earth,
 ¹⁶ your eyes saw my unformed body.
       All the days ordained for me
       were written in your book
       before one of them came to be.
 ¹⁷ How precious to me are your thoughts, O God!
       How vast is the sum of them!
 ¹⁸ Were I to count them,
       they would outnumber the grains of sand.
       When I awake,
       I am still with you.
 ¹⁹ If only you would slay the wicked, O God!
       Away from me, you bloodthirsty men!
 ²⁰ They speak of you with evil intent;
       your adversaries misuse your name.
 ²¹ Do I not hate those who hate you, O LORD,
       and abhor those who rise up against you?
 ²² I have nothing but hatred for them;
       I count them my enemies.
 ²³ Search me, O God, and know my heart;
       test me and know my anxious thoughts.
 ²⁴ See if there is any offensive way in me,
       and lead me in the way everlasting.

autumn walk.

25 weeks old.

THREE WEEKS and counting....

What a normal weekend we just had! We are so blessed that Pin continues to do so well. It has officially been three weeks since her last seizure cluster. Her body is stronger, she is making better eye contact and is grabbing things while on her tummy. We have seen MAJOR improvements in her overall these past few weeks.
We are starting to relax a bit and the nervous, pit-in-my-stomach feeling that has been present since May is now starting to fade. Now, I get to focus on the 20 lbs. I gained.
Xoxo-
S.

grateful and humbled. day 18 & counting.....

Yesterday was a BUSY day and one full of good news:

The day started with Pin having a "swallow test" in the city. She sat in a 'car seat' while I fed her green- apple flavored barium while a moving x-ray watched her suck and swallow. The room was filled- 3 techs, a speech pathologist and a physician. Pin drank one ounce before they stopped me and said all was normal except a little acid reflux (she weighed in at 13lbs. 14 oz. She's getting chunkier and more luscious.)
We then went to Oak Park to visit her Chiropractor (basically a neurological therapist) whom we have visited three times a week for the past month and a half. He was so encouraged that our next appointment is in a week.
On our way home, Jeremy and I had a conference call with Dr. Wylie from the Cleveland Clinic. She was thinking about us and called to see how we were doing (AMAZING and so kind). We updated her from mid-June on and she said, "well- I think she is going to grow out of these."
I then received a call from our Genetic Counselor (I didn't even know this profession existed until 5 months ago) saying two more test results came back normal. One more is still pending and highly unlikely to be positive.

Today, Pinny's physical therapist came and was also very encouraged. This is what happened after 45 minutes into her session. Poor Pin is exhausted.

We are so blessed, grateful and humbled by all of this encouraging news.

To God be the glory for the great things He has done-
S.

getting bigger.

15 days and counting.....

In the past two weeks, Pin has had three MINOR seizures (33 seconds in total). The last "seizure-cluster" was two weeks ago yesterday and two weeks ago today we changed her formula to Similac Alimentum Hypoallergenic (aka 'liquid-gold'). Her body has responded so well to the formula, that we think she may have a milk protein sensitivity. She is doing great overall and really seems to be making sense of the world around her. We are blessed and so grateful.

pin.

physical therapy

Pin's first session went really well. The therapist was very encouraged by how much Pin has changed since her initial visit.

She is now fast asleep in her crib while I frantically work around the home. Any chance she can come everyday?