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-


  1. Sweet ones, we are praying for you always. When Grant was weened all the way off his anti seizure medicine I felt like it was a miracle. It will be God's handiwork for your little blessing as well. All praise and all glory will go to Him! Love each of you!

  2. I am so thrilled for you guys! I know, though, at the same time, how hard this process must be. I pray that God holds you close to his heart and safe in His hands as you wean Lil Pinn from her meds.
    Grace and Peace to you!

  3. I think mommy, daddy, and Pin deserve a badge because you are all going through it together, you having to watch your very heart sit there and suffer. Thankfully and hopefully it will only be your memories and not hers to have. They will just be stories and pictures to her. We continue to pray. Thanks for the updates on here.

  4. Steph, she is such a beauty. I cannot imagine how hard it is to have to see your precious girl go through all this. I praise God that she can be weaned and I'll pray it goes as smoothly as it can. I so wish we lived closer. You are my kinda gal--loving to host, so hospitable. What a gift! Hang in there. This is hard, but I hope you all see the end of the tunnel soon!

  5. she's determined, and so are we. we won't stop praying. love you guys!

  6. Ladies- Your comments and support mean so much to us. Thank for being there for us.

    Love to you-

  7. praying much for all of you. what a tropper Pin is... and her moma and dad too :)
    I am officially inviting myself over for lunch ;)