May 31, 2011


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.

May 29, 2011

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

May 9, 2011

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 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-

May 2, 2011

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.