June 20, 2011

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,

June 1, 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-