Home Sweet Home

What we thought was going to be a 24-hour stay in the hospital turned out to be three days! My aching bones will be so happy to rest in my own bed tonight.

I don’t wish to bore with Rhema’s medical details. Something rather exciting happened, however.

Dr. BEAM and his team were willing to think outside the box, and I love them for it. Mara Mara said seizure disorders have been described like a radio losing its signal or a TV screen flickering on and off. The first night Rhema’s spike index was around 65% — better than her last reading (which was 85% – 100%), but still not great.

Dr. BEAM decided to try a high dose diazepam (valium) protocol on Rhema the second night. This is commonly used to treat Landau-Kleffner syndrome, a disorder in which epileptic seizures during sleep affect a person’s ability to speak and understand language. Dr. BEAM was hopeful that the protocol would improve things somewhat, quiet the electrical storm in Rhema’s brain.

But none of us were quite prepared for the result –

After an initial violent reaction to the high dose, Rhema slept like a baby. The next morning Dr. Duffy’s team excitedly came to us with the news that Rhema’s sub-clinical seizure activity during the night measured at 2%!!!

One doctor said (and I am nearly in tears as I write this),

“Last night her brain rested for the first time in a long time… maybe ever.”

******

Over the next month, we will be giving her a much smaller dose of the diazepam along with her seizure med (and more EEGs in October) in an attempt to continue reducing the spikes. The doctors are enthused; hopeful that we may see remarkable improvements in Rhema if we can keep the spike activity down. Perhaps in doing so, Rhema will be able to acquire some language.

That’s a big PERHAPS.

But one thing I became convinced of while in the hospital and that is,

God is for us.

It may not always seem like it.  Life may be horrible; circumstances may seem hopeless. But God is for us. Seriously, ask me again in a month. If my daughter makes no progress, I will still tell you, God is for us. Because He said He is. And because His goodness is not based on my circumstances. “When I cry unto Thee, then shall mine enemies turn back: this I know; for God is for me.” Psalm 56:9

I once heard a story in which a man lay on his death bed with his family gathered around him. He had once been healthy, but was now dying because of some medical mistake. As the plug was pulled, his wife said to those in the room, “This is by no means a lapse in God’s goodness.”

“It is impossible for any human speech to express the full meaning of this delightful phrase, “God is for me.” He was “for us” before the worlds were made; He was “for us,” or He would not have given His well-beloved son; He was “for us” when He smote the Only-begotten, and laid the full weight of His wrath upon Him— He is “for us,” with all the infinity of His being; with all the omnipotence of His love; with all the infallibility of His wisdom; arrayed in all His divine attributes, He is “for us,”–eternally and immutably “for us”…” – Charles Spurgeon

By the way, Rhema was a superstar, enduring the confinement, the pokes and prods with a smile most of the time.  She only tried to chew the power cables a few times, only bit off 12 marker heads, only tried to stuff foam puzzle pieces up her nose a dozen or so times, only had 5 meltdowns, only got trapped under the hospital bed – and it only took 3 people to get her out – one time. She was AWESOME. 8)

And I know every word to every Dora video now.

For more Beyond Ordinary Blog Carnival stories, go to 5 Minutes For Special Needs.

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22 thoughts on “Home Sweet Home

  1. I have been checking in on your blog daily, and now, what a treat tonight! Love the diazepam! We use the lovely rectal form (Diastat) for rescue purposes (seizures lasting five minutes or more). It makes sense that Rhema needed herself a big big rescue dose to quiet her constant spikes. Wow!

    Congrats on this, and also on surviving three (egads!) days in the monitoring room. You must reward yourself ASAP with a spa day or other self-indulgent decadence where Dora the Explorah is absolutely not allowed.

  2. This is such wonderful news. I hope the good results continue for Rhema! Glad to hear you are home so YOU can get some rest too :0)

  3. this sounds incredibly promising! take care of each other, take care of yourselves. rhema’s brain finally got to rest. may yours find some peace too!

    you are always in our prayers.

    love

  4. God is truly on your side. He is shaping you and your family for the answered prayers. The calling on your life will continue to come forward. I love the story about the TP. God is a God that makes a way out of no way. He said, put your hope in Him and He will NEVER disappoint you.
    Mother-to-Mother

  5. Wow, do you have a knack for making me cry or what?!
    I need to bring in some tissues when I read your blog!
    I’m glad you saw progress and that she was a good girl and was able to rest!
    Keep us posted.

  6. Chills — oh my goodness. Rhema’s brain got to REST.

    The verse that came to mind for me was Matthew 11:28 — “Come to me, all who are weary and heavy-laden, and I will give you rest.”

    And the other thing that comes to mind when I think of your 3-day ordeal:

    “We did it, we did it, we DID it yeah, lo hicimos, we did it!”

  7. Wonderful news for Rhema! I pray that it continues. It amazes me to think that it may have been the first time Rhema’s brain ever rested. What perfect peace. And you’re right: God is for us! (So, who can be against us?) :-) (Stunning picture, too, by the way.)

    Welcome home, my friend. I pray that you all sleep like babies tonight!

  8. Oh, I am so very hopeful that this is an ANSWER for Rhema and your family. It seems that solid answers are so few and far between.

    I hope you have a wonderful, restful weekend.

    xo

  9. Neally & Brandon,

    We praise God for the testimony that you are to so many. Neally, your words on this blog are simply elegantly eloquent! God is using Rhema’s testimony for His glory. We will continue to believe God with you for the recovery of Rhema’s complete ability to speak and communicate. We love you.

    Gena & Tra’Vorus

  10. “God is for us.” What a beautiful, beautiful thought to hold onto. My own thoughts have been running along similar lines lately.

    Those sleep studies are soooooo hard. We’ve been through two of them and wow — definitely not in my top 10. Easily in my bottom 10. I’m so glad that they may have found something that may work for your beautiful little girl and that she finally had a night of rest. That picture just broke my heart — I have one quite like it with our little hospital-weary girl looking out through a painted hospital window. I pray that your views from that window will become more and more views of the outside looking in.

    ~Michelle @ 5MFSN

  11. What a brave girl! Wonderful that her brain has finally been able to rest. I pray that continues for her. That is incredibly important.

  12. Wow, you are an amazing woman, and I so admire your courage and trust in God, even through all of these things you face. God is for us–who can be against us? Oh, I pray for sweet rest for your baby girl, and mind that wakes up refreshed and clear. I’m glad that you’ve gotten a lead. Bless you!

  13. God bless you. My Mia had grand mal seizures for four long years. She has been seizure free for almost as long. Keep the hope. I feel for you. I truly don’t know how we survived those agonizing nights with seizure after seizure.

    Kim, Mom to 3 w/ ASD

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