6-week whirlwind

So much has happened since Grace's first seizure on July 23rd. 6 weeks ago I never even heard of Infantile Spasms or ACTH and had no idea what an EEG was. Two emergency room trips, one hospital admission, numerous tests, a serious diagnosis, a scary medication, and 40 injections later, here we are. But my family is strong and we're tight-knit, and I would venture to say even more so now because of what we have gone through. Tears, pain, heartache, hope, fear, faith, encouragement, blessings, discouragement, doubt, sleeplessness, adrenaline, the whole gamut. But us LoVerdes are fighters--all 3 of us including a 6-month old baby. We persevere. We stick it out. We don't just sit back and take the crap that Satan throws our way. We do something about it. We cry out to God. We fight back. We draw strength from the encouragement and support of those around us.

From the day Grace was born I knew she was a fighter. I called her "the little perseverer." This is the little girl who's mother once chained herself to a weeping willow tree in protest, to keep her dad from chopping it down. Who's mother persevered through 10 years of chronic pain and fatigue and finally beat Fibromyalgia as well as food allergies because she stuck it out and kept clinging to Jesus. Grace has persevered through her trial with great patience and endurance, for example not even flinching during most of her injections. Both my wife and daughter are some of my greatest heroes (I never thought an infant would be one of my heroes).

There are still hills to climb and skirmishes to face, but there is a major light at the end of the tunnel for little Grace. And the source of that light is the Light of the World--Jesus Christ. He has brought Grace through. He is the one that has been touching her little mind and body. The night before we started treatment, the Lord gave me a promise in Isaiah 43:1-7 that little Gracie would emerge from this fiery trial without being burned (see my post on August 9th). That reminds me of the 3 Hebrew boys in Daniel chapter 3 who were thrown into a fiery furnace because of their faith and not only did they survive the intense flame, but they emerged without even the scent of smoke on their clothing. And they did so because Jesus was with them in the midst of that furnace.

Grace has responded unbelievably well to her treatment and thus far has escaped the most serious of the potential side effects of the ACTH. She has experienced only the more benign ones such as a ravenous appetite, fussiness, temporary alteration of personality, puffy face, etc. A lowered immune system is a significant side effect that we can't really measure, but we're taking practical precautions while trusting the Lord to keep her "unscorched" from that as well. (About 5% of the children on this medication die from a sickness such as a cold that morphs into something more severe and ultimately fatal.)

My prayer is that Grace will be like the Hebrew boys, having come through the fire not only unscathed, but with no hint that she was ever in a fiery furnace to begin with.

-Derek