October 18, 2010

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."

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.

October 17, 2010

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.

October 14, 2010

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-

October 11, 2010

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.

October 7, 2010