Baby Steps

Tuesday, January 17, 2012

Day 17 of the diet

Piper has been on the diet for 17 days and we have not seen any significant progress. We have been praying that this diet would start working because she is now averaging 200-300 seizures a day. This is affecting her mood, development and personality even more than before. We are truly at a place where we feel hopeless.

This weekend we went out of town for Justin's boss's 40th birthday. We had a good time but it was extremely stressful because piper basically cried and screamed for hours at a time the whole weekend. We had to call the neurologist and he told us to measure her blood sugar. We had to stop at cvs on the way home from sc to buy a monitor and prick her to check her levels. She was borderline low blood sugar but by the time we got home she had low blood sugar. The doctor said all we can do is give her one ounce of pedialite. The problem is pedialite has dextrose which is a big no- no for the diet because it can make her body come out of ketosis which may cause an increase in seizures.We just have to deal with hours of screaming she does most of the day. We are going to Emory tomorrow so they can do more testing.

The past two weeks have been really rough for us. I was approached by someone I don't know who had heard our story. They were trying to be nice by telling me they were proud of me for not having an abortion because most people who find out their child is "retarded" would not keep the baby. Let me just say my response wasn't very nice. For the first time I was bombarded by the inevitable, ignorance. I tried to explain more about the situation but it was pointless. We know Piper is different and will have challenges but I just wasn't ready to hear such hurtful words. Unfortunately, this is only the beginning of hearing rude things that will be said about her throughout her life.

Our pediatrician referred us to a case worker in the early intervention program because of how much she has regressed developmentally. They are coming by on Friday to do an evaluation and form a plan for her. The problem is if the seizures continue she will be unable to learn new things. Right now she is so tired that she only has play time for a few minutes a day.

We spend most of our time at home. I was trying to get out and take her places but she is so unhappy and having so many seizures that the stress is just not worth it. As you can probably tell we are at the end of our rope. The bitterness and anger is setting in and I have tried for 2 months to resist these feelings. Things are just not getting better. Justin and I have trouble getting excited or hopeful about anything. This is such a hard situation and gets harder every day.


  1. Annie, I have seen your posts on Facebook and followed bits and pieces of your story. You story has moved me, and we have been praying for all of you, especially for that precious, darling, beautiful Piper! I can't imagine all of the emotions you are feeling as you travel this very difficult path, and I admire your strength and your love, both for God and your family. I heard the following scripture in church recently and thought of you. Isaiah 46:3-4 "Listen to me, you whom I have upheld since your birth, and have carried since you were born. Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you, and I will carry you; I will sustain you, and I will rescue you." Jeremiah 29:11 "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." Also, Ginny Owens is a blind contemporary Christian artist who has a song that carried me through a difficult time. It is called "If You Want Me To." Here are the lyrics:
    The pathway is broken
    And The signs are unclear
    And I don't know the reason why You brought me here
    But just because You love me the way that You do
    I'm gonna walk through the valley
    If You want me to
    Cause I'm not who I was
    When I took my first step
    And I'm clinging to the promise You're not through with me yet
    so if all of these trials bring me closer to you
    Then I will walk through the fire
    If You want me to
    It may not be the way I would have chosen
    When you lead me through a world that's not my home
    But You never said it would be easy
    You only said I'd never go alone
    So When the whole world turns against me
    And I'm all by myself
    And I can't hear You answer my cries for help
    I'll remember the suffering Your love put You through
    And I will go through the valley If You want me to

    I hope you will listen to it on youtube, and that it brings you comfort like it did me. In the meantime, stay strong and know that God will carry you through this. We will continue to pray for healing, answers, peace, faith and strength for you, Justin & Piper daily.
    Love, Elizabeth & Mary Lewis

  2. Annie, I can't even begin to imagine your frustration and pain. I am so sorry things have not gotten better and I will continue to pray they do. It is so obvious what a strong person you are, what a great marriage you have and what loving parents you are.

  3. That picture of your family is beautiful! I'm praying God equip you with some thick armor to be able to withstand ignorance. Please don't let it sink in-it isn't worth the pain. You are a wonderful mom. Period.

  4. Psalm 32:7 "You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

    Annie & Justin,

    Norma Cuthell mentioned yalls blog to me asking me to pray & I just sat here reading it start to finish with my heart just weeping alongside you. Justin, we never knew each other well, but I remember you from youth group/school (my maiden name is Jordan Zachary). I cant begin to find words... we KNOW your hopelessness, your fear, your anguish over the loss, your feeling nothing will every be the same or ok again...all of it. Our 2nd child, our sweet Ansley, was born with a rare brain disorder as well (microcephaly). She was born with deficits in 2 parts of her brain & after an MRI @ 3 mos. her diagnosis left us shattered. We were told by her neurologist that she may never have the gift of speaking, walking & that her cognitive functioning could be very limited. The Lord stirred in our hearts to take him at his word, and while submitting her wholeheartedly to His plans & purposes, to BELIEVE in thelimitless power of His outstretched hand. We began a journey of pleading for mercy gifts of abundant life to be poured out over her sweet brain one milestone at a time in the name and power of Jesus. With the exception of a SMALL # of people, everyone thought we had lost it. We heard it all...."you're in are being need to accept reality." It was devastating for us to have most of our family & friends wanting us to be realistic for the sake of protecting ourselves from dissappointment at the potential of God answering a "no" to our pleas. My precious father in law (who was battling terminal cancer at the time) encouraged us with the passage in 1 Corinthians about being "fools for Christs sake" & long story short...we knew we had NO OTHER place of hope than the Word of God. LO-ONG story short, we have a 2 1/2 year old child of redemption and restoration. She is turning every label of "impossible" by therapists and drs into impossible explanations of her progress. I dont want to keep stumbling over words, so Im just going to pray with you now. Jesus, I come to you pleading for Justin, Annie and sweet Piper. Lord Jesus would you (acts 4:30) stretch out your hand over sweet Piper's brain in the name of Jesus Christ to bring healing and restoration. Would you place your mighty right hand on your precious child's brain now Lord to be still in the name of Jesus Christ. Lord would you just put a new song in their mouths. A song of deliverance Lord and of healing and your endless grace.

  5. Would you give them the secret treasures of this dark time (Is 45:3) Lord and lavish your hidden riches on them now by flooding them with your presence and spirit to uphold them and bring peace, Lord. When the anxiety feels choking Lord would your bring your sonsoltion (Ps 94:19) to their hearts and minds and bring peace. God I ask that youwould show how great your delight in the rescuing of their hearts is and restore what has been lost. Jesus you are sovereign and you are so good Father, and I pray that you would give them the strength to lay their bleeding hearts our before you and RUN to them. Surround them with your unfailing love. You are so close to their brokenness Jesus, would you show yourself true and faithful to your word by saving their crushed spirits now, Lord? (Ps 34:18) Would you restore twice as much Lord Jesus to sweet Piper's brain as what has been taken (Zech (9:12) and may they be not in chains to the anguish of their souls Lord, but prisoners of HOPE Lord. Would the plans against them and their hearts be bound by the blood of Christ Jesus and may they be captured in the Hope of your word, Lord. Jesus, I plead that sweet Piper could lie down and sleep in peace (ps 4:8) Lord Jesus because YOU ALONE, O precious Lord, make her dweel in safety. Lord Jesus would you lead this precious family beside still waters and along green pastures Lord and put praise on their lips. Jesus, when they dont have the strength, would you cup their faces in your hands right now Lord and lift them up to you and shine your radiance upon them as they look to you. Would you draw them into your precious and make yourself known to them in ways they do not yet know as they cry our before you Lord (Jer 33:3). Jesus would you turn the favor of your mercy on this family and pour out your power on Pipers behalf. You are the God of all mankind and NOTHING is too hard for you Lord Jesus!! (jer 32:27) Your power is not limited to our logic Lord Jesus and I pray that you would show the strength of your hand in Piper (ps 68:28). We plead before you Lord to pour out your strength over Pipers sweet brain to redeem in a way that only you can, Lord. Would you bring GLORY and PRAISE to your name Lord Jesus by speaking life into her brain Lord. Because you are able to speak life into what isnt, Jesus... would you show yourself true to this word for sweet Piper.(rom 4:17) Lord would you level the mountains in front of this family by the strength and mercy of your hand (is 45:2) Lord, would you pour the oil of gladness on them now instead of mourning and cover Justin and Annie with a garment of praise instead of a spirit of despair (Isaiah 61:3) Lord Jesus would you make this family into an oak of righteousness for the display of your splendor. Bring your glory over sweet Piper now Lord to bring glory to the power of your name Lord.


    Beautiful song to stir hope for you!!!
    "What if every tear you cry will seed the ground where joy will grow?"

    Let it be so for this family, Jesus!!