helmet.

Pin gets her helmet THIS Wednesday. According to the people at Cranial Technologies, she may need two. One complete round and then another. We have decided to embrace the flatness while it is still with us. I mean, her head is like a square. She still does not roll from her back to her tummy but, How can you roll a square?

Poor baby. I feel like it is my (our) fault and for that I feel bad. I was timid to put her on her tummy and didn't know ways to change that. Frankly, we were in survival-mode. I did try different positioning and tried to get her excited about time on her tummy, but she would roll over to her back. Again and again.

Well, it is what it is.

Here is her mug shot: 

After they determined she did (in fact!) need a helmet, she had a 3D scan of her head. They covered her entire head with a mesh cap to make sure the shaping is correct. She is such a trooper. I wanted to cry for her but held back the tears.

3D Pin:

the countdown.

Pin turns ONE on April 25. I am already getting so emotional just thinking about celebrating her lil' life. Jeremy is so aware and insightful- he thought we needed to be surrounded by family. So, he bought us plane tickets and we will head down to N.C. for Good Friday, Easter and Pin's birthday (I envision a weekend of pastels). We decided to have a small 'family' party and forgo the BIG BASH for now. I just don't think we have the emotional energy to do it up big THIS year. Pizza and cupcakes are on the menu. Simple, basic and predictable.
xoxo.

must read.

My cousin posted this link on her facebook page. It is thought-provoking and a definite way that I want to approach child raising:

http://itsalmostnaptime.blogspot.com/2010/02/i-dont-want-my-children-to-be-happy.html

funny girl.

prayer request.

Many people have continued to ask how they can pray for Pin. We so, SO appreciate your prayers and friendship. It means the world to us. 

Right now, Pin has some pretty significant delays developmentally. She is almost 11 months old and is not sitting up on her own (photos below were on a really good day). She can 'tripod sit' when she feels like it but is weak and unstable. She has a flat head that will require a helmet (or DOC band) that she will start to wear in a few weeks. We are hopeful that as her head shape changes, she will gain better control and balance.

She remains on two anti-seizure medications which 'slow' her system down. I am wanting to ween her off of these RIGHT NOW but know it will happen when Jer and I both feel ready (with Doc's approval, of course). I think once these are no longer in her system her movements will speed up a bit, too.

Thanks again for walking this journey. Love to you all.

S.

pin today.

pin got sick.

Flying back from Florida, I caught something nasty that caused us to stay 10 days longer than expected. I ended up getting my parents and Pin sick. I felt terrible.

Pin got her first fever ever. 103 was the highest. Jer and I had been warned again and again that we would see an increase in seizure activity with the onset of a fever and a possible hospitalization would be necessary, too. I was waiting and waiting and it never happened. She never had one. I was so overwhelmed and frankly, shocked. I cried a good hard cry of happy tears.

My dad was 'on watch' as Pin fell asleep on the counter.

Poor bebe.

Pin visited her N.C. doctor. We love Dr. Van Zandt

last seizure.

I am no longer counting 'days since last seizure' but I know the date because it was the morning after my sister's BIG 4oth birthday bash: February 5. That is the last time I have seen a seizure.

We have hope.

5 weeks in north carolina.

Pin & I spent the whole month of February and the first week of March in North Carolina. We hated being away from Jer but it was so nice to escape the cold winter. We stayed with my parents and Pin did great. She has a white crib (similar to the one in her nursery) in her own room. I was able to get away for five days to meet Jeremy in Florida without Pin (thanks to my dad and mom). I came back renewed and full of hope. I am so grateful.

xoxo.
steph

Below are some of my favorite photos taken over the five weeks:

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.