i cried. jer clapped.

Yesterday, Jer and I both witnessed Pinny roll from her back to her tummy for the first time. We are thrilled for this lil' milestone!

Thanks for praying for her. We are blessed.

out of chaos life is being found in you.

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

You make beautiful things
You make beautiful things out of the dust

overnight at hospital.

Last night's stay at the hospital was rough. Not in a "hard news" way but just plain old tiring. We shared a room with a girl two months younger than Pin who slept ALL day and cried ALL night. The poor girl had seizures and spasms (like Pin) but was fairing far, far worse. Her body didn't respond well to the anti-spasm medicine, that has thankfully worked for Pin, and she is now on one that makes her really swollen. I have never seen anything like it....she looked so uncomfortable. I felt so sorry for her and yet SO grateful that the Lord sparred us from that route.

In May, when Jeremy and I were given the news that Pin's seizures had evolved into spasms we were devastated, shocked, discouraged and heart-broken. We were then told the two treatment options used, their side-effects and that we had 10 minutes to decide. We stopped, prayed and felt peace about the option we chose. We still feel peace and such gratitude to the Lord for His guidance.

Yesterday morning, Pin was "hooked up" to the EEG and stayed that way until 7:00 this morning. She is such a good little patient but is definitely becoming more opinionated as she gets older. Last night, she was fascinated by all the cords and I found it disgusting that she kept trying to put them in her mouth.The hospital is dirtier than any hotel I have ever stayed in....

Her neurologist visited us several times yesterday and gave us great news. Pin's brainwaves are much improved since her last EEG (July 5). Her brain activity is still abnormal but overall looks really good. We do not need to add another medication and are considering reducing her current spasm medicine a bit. We are very grateful.

As always, thanks for praying and loving us so kindly-
Xoxo.
Steph

brief update.

May: Living hell.
June: Living hell.
July: Pure bliss.

Pin is now doing well. I have not seen a seizure or spasm for three+ weeks and we are BEYOND grateful. She is on one anti-seizure medication and one anti-spasm medication and these seem to really be working. She has been off phenobarbital for 5 weeks and we are seeing MUCH more emotion, movement and overall stronger muscle tone. We have an overnight EEG this Monday (August 1) to make sure the spasms are truly under control. If they feel like she needs a "boost" to clean up her EEG even more, she will start two weeks of spasm/steroid shots.

Prayer Requests:
1. Pin's development.
2. Our hope (this roller-coaster ride has left us cautiously preceding forward for our hearts sake).
3. A total healing.

We love you all so much.
Xoxo.
Steph

waiting is not fun. i like fun.

Two things I read online recently have stayed with me:
"Today I feel like the kid who missed the deadline for summer camp and stayed home all summer watching cartoons." Zooey Deschanel (via twitter)
  
"As we wait, we relinquish control, surrender our wills, give up our false hopes, and realize that if anything is going to happen at all, it will have to be God's doing." - Steve Smith, The Lazarus Life (Posted by my friend, Dennis Massaro via facebook).

It's been a weird summer. I'm realizing I'm a girl who likes order and routine (which is funny seeing I'm half Italian. Have you ever waited for a train in Italy?) and there is very little of that in the summer. That is the best part of summer and the worst.

I'm feeling a bit stuck in life right now. I know MANY of you are feeling the same way because I keep hearing it again and again from so many people. We continue to contemplate the next career steps for Jer. I keep cleaning our condo for house showings that never get feedback. We are in a weird place. Trying to change something, anything to get us out of the rut we have been living in. Lets be honest, my two new dining room chairs have brought me more joy than I care to admit (see photo above. Aren't they cute?).

Yet, we wait. As the quote above says, we relinquish control and surrender our will. I'm having a tough time doing that these days. I would rather read Hello Giggles than give up false hopes. I am scared that the Lord will have me living HERE in this place forever. I know in my head that is not true but my heart is SO ready to move beyond this 'tiptoeing' through life stage.

I have worried over and over again about Pin's future. She turned 15 months yesterday and is still not sitting up. I DO realize that if anything is going to happen at all, it will have to be God's doing. I'm just tired of waiting. I'm confident the wrong thinking is entirely MY fault. The life I have in my head is not matching up in the reality. I keep repeating the same simple prayer, now in my thirties over my daughter, that I did in my twenties over a husband: 'I will trust You even if it kills me.'

It's true. No matter how I feel, He is God and I am not. He knows and I don't. I want His reality and not the one living in my head (well, it would be amazing to be stick thin and only be allowed to wear J.Crew).

As for me and my house, we will wait on the Lord, while watching cartoons.

Xoxo-
Steph

we survived. barely.

Last night, I administered Pin's LAST dose of phenobarbital. I should have bawled my eyes out, but I was too tired. This marks the end of the past two weeks of hell (Lord willing). Pin's weaning process literally wore out 4 grown adults (my dad, my mom, Jer & me). It was one of the hardest times of my life as I saw my daughter regress in all ways, have insomnia that left her awake for 18 hours at a time and have too many spasms/seizures to count. Last Saturday, Pin had an acute upper respiratory virus that led us to the ER and on Wednesday, she produced her first tooth. It is truly amazing that any growth happened amidst the chaos (there is a life lesson in there somewhere).
This morning, thankfully, feels more like normal life. As I type this, Pin sleeps soundly in her crib. My dad has returned to North Carolina, Jer is back at work. My mom and I are making dinner for tomorrow night as we will be at the hospital all day. Pin has a scheduled follow-up EEG that will be telling if her current spasm medicine is working. Oh, I pray it is.
Many of you have reached out to "check-in" with us. Thank you SO much again for all the texts, notes, voice mails, prayers and love. You helped us survive these past few weeks...

Prayer requests:
1. The Lord would show favor on us and free us from this situation by healing Pinny.
2. Pin's current spasms medicine, Sybril, would be effective and would have 100% cessation of all spasm activity.
3. Improvement overall in tomorrow's EEG.
4. The Lord would restore that which is broken in both Pin's brain and in our hearts.

Thanks again for loving us so dearly,
Steph

june 2011.

all praise, glory & honor.

First and foremost, our God is amazing. He is SO personal, loving, caring and good. We are in awe of His power & might. Through this whole trial, it has been our desire to sit firmly on THIS three-legged stool.

We found out today that Pinny DOES have infantile spasms. We, of course, are shocked, saddened and discouraged. But, we have peace. We feel your prayers, have been so encouraged by your texts and know that we are not walking this alone.

We made some treatment decisions today that we hope will be effective. We will likely know in the next two to three weeks whether the first drug we are trialing will work. We would love your prayers for the following:

-We would have 100% cessation of the spasms without this drug's main side effect (permanent visual field loss).
-That the Lord would cup His mighty hands of protection around her lil' brain.
-Advancement in Pin's development despite this major step back.

We can't thank you enough for being here for us. We have hope.
Love to you-
S.

update.

Jer is at the hospital tonight with Pin. We got her "concerning movements" on the EEG...she "happened" to have one of the worst episodes we have seen her have. It feels VERY bleak and seems most likely infantile spasms. Reviewing a portion of the EEG tonight and we meet with the doctors at 9 am. I am preparing for the worst and praying for the best. Praying boldly for a miracle for our lil' girl TONIGHT. He is able.

heading to the hospital: tuesday.

The last few weeks have been challenging ones. We successfully weaned Pin off of one-half pill of phenobarbital and then things came to a screeching halt. We began noticing some concerning movements while Pin was fully awake. She would look to one side and almost lose consciousness for a second and then repeat it again and again. We immediately recorded these movements and sent them to her neurologist. They said they looked benign. We weren't satisfied. We videoed again and sent it. Again and again until they reconsidered. Today, roughly two weeks after the initial email, we finally were told the movements are concerning and Pinny needs to be hospitalized on Tuesday.

So, we humbly ask for your prayers again. Jeremy, Pin and I will be headed down to Children's Memorial on Tuesday and Pin will have another EEG. This EEG will determine if her movements are benign (oh, we pray they are!!!), seizures or possibly worse, infantile spasms. Please, PLEASE join us in praying for Pin.

Prayer Requests:
-Pray her movements are not infantile spasms. This would be a major disappointment, as it would suggest that the dysfunction in her brain has continued, if not progressed (after several largely seizure-free months).
-Pray for wisdom, guidance, direction and peace for Jeremy and me.
-100% healing for our lil' girlie.

Thanks for standing in the gap with us,
Steph & Jer

badge of courage.

This girl scout deserves the 'badge of courage.' I am so proud of her. As many of you know, we started SLOWLY weaning Pin off of one of her anti-seizure meds, phenobarbital. She has been on this medication since day 7 and I believe it is the cause of her significant delays. Here is the list of phenobarbital withdrawals:

Some people who use Phenobarbital for a long time may develop a need to continue taking it. People who take high doses are also at risk. This is known as DEPENDENCE or addiction. If you stop taking Phenobarbital suddenly, you may have WITHDRAWAL symptoms. These may include anxiety, convulsion or seizures, dizziness, increasing weakness, lightheadedness, muscle twitching, nausea, sleeplessness, trembling hands and fingers, unusual visions, vomiting.

I now know the severity of this med as we see her withdrawal....so far we have seen muscle twitching, vomiting, trembling and one seizure. I just thank the Lord she will remember NONE of this. We, however, may need some serious counseling soon. My heart can't take much more.

The highest dose she has been on is 3 pills of 15 mg each. She is down only a half of pill and we have seen some great gains. She is reaching more, showing more emotion, voicing new noises and is stronger overall. Her next decrease is THIS Thursday, continuing the half of pill every two week cycle.

Several of you have reached out to 'hang out'. I would LOVE to but I feel like I need to stay close to home these next three months and keep a strict schedule for Pin. Please invite yourself over ANYTIME. I love company and I live to host lunch, dinner, brunch, etc. If you want a meal at my place, call me. For real.

Thanks for praying and loving us through this process. Again, I am so proud of Pin and can't wait to meet our lil' girl once she is med-free. 

Love to you-

S.

hi guys!

Hi guys. It's me, Pin.
Mama and Papa started to wean me off some of my meds last Thursday.  I feel good! I am not as tired as before and I'm becoming such a cry baby! It's embarrassing. I cried two days in a row when Mama moved me from the car to my crib....but, I hate it when she wakes me up. I'm getting my first tooth...FINALLY. This stupid thing has taken forever. It is on my top right and it feels funny when I touch my tongue to it.
Mama said lots of you are praying for me. I feel the prayers and just wanted to say 'thank you.' I need to go take my bath now. I hear the water running.
Thanks again for praying. I will write again soon.
Xoxo. Pin

Oh. I turned ONE last week. Click here to see my photos.

big night.

Tonight is a BIG night...I am nervous and so excited. You see, tonight we are starting to s l o w l y wean Pin off of one of her anti-seizure meds. As always, our goal for our daughter is for her to be seizure-free, med free. We feel SO grateful that her seizures have been under control and we now want her on as little meds as possible while remaining seizure-free. After much research, it is my belief that the phenobarbital she is on is the major cause of her being developmentally delayed. It is a very strong barbiturate that slows everything down. Everything. She has been on this med since day 7.

Our prayer requests:
1. Please pray that as we wean her, seizure activity WILL NOT return.
2. Pray that we will see Pin's true personality emerge coupled with a major increase in development and emotion.
3. Pray she will sit up on her own, roll from her back to tummy and reach her arms out to grab.

Thank you so much for walking THIS far with us and for always asking how to pray.
Much love and gratitude-
S.
*we are weaning Pin under the supervision of her neurologists. they are fully aware.

pin turns ONE.

*the better photos are taken by our dear friend, kim lindstrom.

pin likes eating outside.

great grandma.

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: