Baby Steps

Tuesday, January 24, 2012

No changes yet...

Well, we are not making a lot of progress right now. We went to Emory last week and they adjusted her diet so that her blood sugar doesn't drop throughout the day. They are worried about the possibility of acidosis which one of her meds can make worse. We are weaning her off of this medicine for that reason and also because it has really bad side effects. We have already seen so many side effects and not sure if it's from the two meds or the huge number of spasms she is still having... Probably a combination of all.

We noticed immediately after we started weaning the medicine that she was having extreme withdrawal symptoms. She is very irritable, lethargic and not active at all. She slept 16.5 hours the first day on a lower dose. She has stopped smiling and playing. The diet has such a small amount of carbs that she doesn't have much energy to begin with and when she has seizures it takes all she has. The goal of taking her off this medicine is to see more energy, muscle tone and hopefully she can learn how to hold her head up again. So far she is much more alert but also more aware of her seizures. When she has them she screams during every one. So yes, we are talking about 250+ blood curdling screams a day. Yesterday she had a better day.. Still 250 spasms but she smiled once and its been weeks since she has smiled at me. It's the little things that are so important right now.

Our next step is to have an ERG.
An Electroretinography (ERG) is an eye test in which electrodes are placed on the cornea to measure electrical responses to light in an effort to detect abnormal retinal function. We are deciding if trying another medicine is the next step. Many children with Aicardi have seen drastic reduction in the number of spasms on this medicine. The drug can cause permanent vision loss and is pretty scary to try but we have no other choices right now. Unfortunately, vision loss trumps brain damage from seizures, but they both are pretty much equally crappy to me. To even begin this medicine she has to have a baseline ERG done and have it repeated every three months to make sure her vision isn't affected. Luckily Emory offers this service because it's not a routine procedure. We go on February 3 to have this done.

We have started working with the Tennessee early intervention program because of her developmental delays. We will have an evaluator come out next week to determine what she needs. They will work out a program and someone will come out every week and work with her and show me what to do.

Justin is in Canada for 6 days at his yearly company meeting.He is having a good time so far. It's freezing cold and covered in snow. He will be back on Saturday so pray for a safe trip home!

While he has been gone I have really been able to spend my time loving on this sweet little girl and learning how to adapt to her needs. Since she is so angry most of the time we do a lot of relaxing activities. We have always played music so I'm continuing to do so but I've found out she likes hearing us read to her. I tried reading some kids books but she would cry when they were over so I thought I would try something longer. I pulled out the Harry potter series and read for hours. I kept saying I wanted to read them again, here is my chance! She just looks and listens which makes me happy.

Every day is a challenge. We continue to pray and take it a day at a time.


  1. Hang in there. You are such an inspiration. So many people are thinking and praying for you all.

  2. YOu are an amazing mom. I am so proud of you. Your nspiration and wisdom is to be honored, I love you love Ellen

  3. Praying for you guys and Precious Piper! <3

  4. I am praying for Piper, you and Justin!

  5. You are a wonderful mother to a very special little girl. My family and I pray for Piper, and for you and Justin many times throughout every day.

  6. Still praying for you. What an amazing woman you are. Your smile always was special to me, so I know how important Piper's smiles are to you. Love you! Susan

  7. Colossians 1:9-12 "For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every good way; bearing fruit in every good work, growing in the knowledge of God, being STRENGTHENED with all power according to his GLORIOUS MIGHT so that you may have GREAT ENDURANCE and PATIENCE, and joyfully giving thanks to the Father, who has QUALIFIED YOU TO SHARE IN THE INHERITANCE of the saints in the KINGDOM OF LIGHT."

    Ya'lls sweet family has not left my heart since I first read your blog. I just keep pleading for the Lord to give me wisdom in how to pray for you and I just keep coming back to HOPE. It is so, so risky... I know. It feels terrifying, uncertain, full of the fear of dissapointment and etc, but I just keep coming back to standing on God's word in a bold surrender for you and sweet Piper. I have been sitting in the above passage for the past week and the Lord is doing a wonder on my heart about living IN the richness of the inheritance we have received through Christ. I think about what it truly looks like to live fully in the glory of knowing I am a child of the Almighty, gracious and powerful KING of the UNIVERSE! Who holds all things in his hands, created all things, is in control of all things....AND IS CAPABLE OF ALL THINGS!! His word says that nothing, absolutely NOTHING, is impossible for Him (matt 19:26, Luke 1:37) and that Jesus is the SAME yesterday, today and forever (Hebrews 13:8). The hands that parted the seas to provide a way of escape for the Israelites and rained down manna from Heaven....are the SAME hands reigning today. And though it feels impossible and illogical and at times hopeless...His power is unchanging. His MERCY is RICH to clothe you with his "GLORIOUS MIGHT" and to be strengthened with "ALL POWER". To sit in thinking about being strengthened with ALL the power of Jesus in his glorious might is mindblowing...that is our inheritance....that is our freedom....that is our victory in Christ that we can stand on and proclaim over our lives. That is the power I am praying and pleading for to be poured out over sweet Piper and the hearts of you and Justin. I am storming the throne room of the Almighty King for the deliverance of your sweet one and asking the Lord to come quickly on your behalf.

  8. We have had so many similar moments, and moments I wont even pretend to know how you feel walking through them. I dont know about you, but for those moments when I was so angry or bitter or filled with more sorrow than I could bear...sometimes I just didnt even feel like I had the strength to pick up my Bible. Something we did that was so helpful for us was just writing out important, relevant & hope stirring scripture on little note cards and putting them EVERYWHERE in our house(with a little painter's tape so it doesnt stick or leave gunk behind when u take it off). So when the moments come when you feel like your heart just cant keep beating through the pain...its just right your face to breathe in and let it wash over you. Another thing I found helpful when I would just open my Bible and stare at it wondering where to even begin...was just to rest in the Psalms. I would just flip and cry, flip and let the words that spoke all the things my heart couldnt find words for...cry and claim the truths. Rob & I would read them over each other when we would feel overwhelmed and it was always so so helpful for us.

    Continuing to pray that the LORD would write His name on your home (Prov 18:10) and that it would be a place that yall can run into to find rest and peace. Psalmd 18:28-29 "You, O LORD, keep my lamp burning; my God turns my darkness into light. With your help I can advance against a troop; with my God I can scale a wall." Praying this over you that when you feel emptied out He would make you aware of His power that keeps your heart burning and strengthened to keep climbing.

    Psalm 91:11-12 "For he will command his angels concerning you to guard you in all your ways; they will lift you up in all your ways; so that you will nto strike your foot against a stone."

    2 Corinthians 5:7 "Walk by faith, not by sight."

    Psalm 5:1-3 "Give ear to my words, O LORD, consider my sighing. Listen to my cry for help, my King and my God, for to you I pray. In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation."

  9. A couple of Kutless songs we love:

    "Thats what Faith can do"

    "everything I need"