Ambulatory EEG

Cute backpack, eh?

Cute backpack, eh?

Yesterday Rhema got her own princess cap.

We’re at home for the next 24 hours doing an ambulatory EEG. Initially, we were happy at the thought of not staying in the hospital, but we were concerned about keeping all the electrodes glued to her scalp and the monitoring equipment out of the toilet (literally). We’ve had to be pretty inventive in the last few hours, but so far, Rhema is doing great!

The diazepam protocol Rhema’s been on for the last six weeks has brought about some interesting results. There’s no doubt that it has helped to calm the electrical storm in her brain, and there have been several amazing moments for us:
1) In the hospital, a high dose of diazepam essentially cleaned up her EEG. Spike activity was knocked down to 2%!

2) Hi!

3) Soon after she began the protocol, I believe Rhema spoke her first sentence. She wanted a popsicle and dragged me over to the freezer. She said in a sing-songy voice, “Iwant… …. …. … pop.”

4) She began greeting me. If I’ve been away for a couple hours, she runs to me with a smile, claps my hands together as I stoop in front of her and says “Yaaayyyyy.” Oh. my. heart.

5) This past weekend some people stopped by our house (2 adults and a 6 year-old girl). Rhema walked right up to them, and when they said hello, she repeated “hello” right back to them. Then, with interest in her eyes, she walked over to the little girl and gently patted her on the chest. Brandon and I had to pick our jaws off the floor. We’re still trying to figure out what caused that little exchange. We have never seen Rhema do that before. Ever.

Most of these events have been “Elvis Sightings” moments; they came out of the blue, and then they disappeared just as quickly, not to be repeated. 

And besides them, Rhema has just been Rhema.

In fact, the diazepam has actually caused some not-so pleasant side effects. It usually makes her hyperactive and agitated. She’s been unable to focus at school and we’ve seen an increase in noncompliance and tantrumming. She’s had trouble sleeping at night (but Kathryn prayed Ps. 4:8 and it’s been getting better!). And she has limited her already limited diet to about 3 food items.

Sigh.

Honestly, a small part of me was hoping for some earth-shattering miracle. I could see us on the cover of Children’s Hospital magazine with the headline “Medical Breakthrough” and Dr. BEAM beaming at our side. It didn’t happen. But that’s o.k.

I am just thankful. So thankful that God is God of both big and small miracles.

Only peace here in this heart of mine… and that, my friends, is one of the big miracles!

Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD is everlasting strength.” Isaiah 26:3-4

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14 thoughts on “Ambulatory EEG

  1. i won’t cry.

    i won’t.

    i w…

    “She began greeting me. If I’ve been away for a couple hours, she runs to me with a smile, claps my hands together as I stoop in front of her and says “Yaaayyyyy.” Oh. my. heart.”

    ok, forget it then.

    “we must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

  2. Oh, precious Rhema! I am so delighted that the Lord has given you glimpses into her mind and into her heart. (And I’m happy she’s still resting relatively well at night; I have been meaning to ask you about that!)

    This sounds like a strange Scripture for this post, but as I read, the Lord laid passages from Daniel on my heart:

    “If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O king. BUT EVEN IF HE DOES NOT, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.” (Daniel 3:17-18; emphasis mine)

    And …

    “The King Nebuchadnezzar leaped to his feat in amazement and asked his advisers, ‘Weren’t there three men that we tied up and threw into the fire?’ They replied, ‘Certainly, O King.’ He said, ‘Look! I see four men walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods.’ ” (Daniel 3:24-25)

    May the Lord richly bless your faith in the fire, even as He is walking with Rhema!

  3. Sounds like progress! But do you find it gets frustrating sometimes, like you never know if it’s going to last? Or if there’s progress in one area, something backslides in another?

    I admire your faith. Sometimes I feel like screaming at God for showing me only fleeting glimpses of what is in Kayla’s mind. I feel like my kid is IN THERE somewhere, but I just can’t reach her.

  4. I’m thinking of you and praying for you tonight, Mommy and precious little Rhema. Certainly those fleeting glimpses can both be exciting and frustrating. But, there is something beautiful about knowing that she is in there. She’s absorbing, and one day with God’s help it will come out. Rejoicing with you in your little victories, and standing with you through the battles!

    Proverbs 23:18
    There is surely a future hope for you, and your hope will not be cut off.

  5. I’ve shared that ache when something new appears and just as quickly disappears. We have been so fortunate though, that sometimes they come back again, each time for longer. The periods of disappearance are less frequent but I for one certainly appreciate the struggle and the heart ache.

    Very best wishes to you and yours from me and mine

  6. What a precious photo. And such amazing Elvis Sightings (but do check your link, 😉 ). I’ve been coming around to hailing such Elvis Sightings as a privileged view to what’s “in there” that we don’t quite yet have the key to unlock.

    Thankful. Yes, that’s something I’ve been feeling a lot lately.

    Will be checking back to hear what the EEG results might show!

  7. This post brought joy to my heart…and also a sense of sadness. I am praying for you tonight, and I’m lifting up your arms for you as you fight this battle. Praise be to Jesus who “Always leads us in triumph.”

    P.S. Ethiopia? I would LOVE, LOVE to hear about that.

  8. Wow thank you Jesus for little glimmers of hope! I pray that this is a glint of what’s to come! You are a wonderful momma! I love the penny’s all over, hey thats creativity at work! Thinking of you always!

  9. Yes and Amen to what Kathryn says. Not to make this about me, but with diabetes I often have to make myself take hope in this: God IS able to heal me, but he hasn’t yet. But still I will praise him, still will I expect a miracle, yet will I be grateful for the little victories, yet will I trust in His grace to carry me UNTIL he heals me.
    The Hebrew boys made up their minds that they were going to serve God whether God chose to save them or not. It’s in this unconditional dedication and faithfulness that God truly gets glorified.
    I am praying for you, Brandon, Rhema, and Hope continually. Remember that Jeremiah 29:11 applies to Rhema too!
    “‘For I know the plans I have for you,’says the Lord,’plans to prosper you , plans to give you a hope and a future.'”

    Praise God!

  10. Pingback: Unfolding Miracles « Autism In a Word

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