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.