The first week of April, her heart rate soared to 229 beats per minute. We couldn't get it below 180, and we feared she felt pain that we were not addressing. During her days and even her nights, that little heart beat near 200 bpm with spikes up to 215 or 229.
She'd struggled for weeks with external ear infections, and we'd taken her to the Pediatrician for help. Once the infections resolved, however, we called for another appointment with Dr. Oliver, the chiropractic neurologist. He generously gave her a treatment of the Repetitive Somatosenory Peripheral Stimulator (no charge). On the ride home, Addie finally relaxed, and for the first time in weeks, her heart rate dropped into the 140s and her limbs loosened.
One day, Cicely exclaimed, "Addie has a new tooth!" I'd not even thought about prying her tightly pursed mouth open to investigate during those weeks of planking. I did so now with a pink sponge swab. Sure enough! Addie not only had 1 tooth, she had 2 new baby teeth--her front ones--one on top and one on bottom. Remember that she's almost 2 years old? Up to this point, Addie had grown 4 molars, but her front baby teeth never came in. We did not think we'd ever see them among her gummy gums.
After the teeth popped through, we delighted in five days in a row with minimal seizures. She gained 5 ounces! We tried Addie's hearing aids again, and to our surprise, they still fit her. We could put them in and leave them on for hours. It didn't seem to bother her at all. We felt such hope once again that she would progress. Her vision therapy made great strides, too. She could maintain her gaze on an object and look away when it became exhausting. Sooo exciting. We even took her to church three times and were together there as an entire family!
But, those good days ended too quickly. Addie's eyes started to roll back into her head, and then the lip smacking began again (indication of seizure in progress). Little things started setting her off into cascades of seizures. . . it almost seemed as bad as when we brought her home from the hospital. We couldn't even position her without her seizing. Attempts at therapy came to a halt; she just couldn't handle any stimulation. For six weeks, she planked and stiffened, fainted, and went limp, bobbed her head like a chicken, rolled her eyes, and smacked those precious lips.
Again, those tightly pursed lips evaded entrance. One day, Chris put a silicone finger toothbrush on his finger and rubbed Addie's gums to see if she had teething pain. OUCH! Like a horse, that girl bit down and did NOT let up. We looked in her mouth again and two more front teeth had emerged--another on top and another on bottom.
Wow! Did you ever know teething could be so stressful? When babies are cranky, now you know why. For Addie, who does not cry, her seizures and heart rate are our only indicators that something is amiss. Of course, for Miss Adelaide, it seems everything triggers seizing. Chris put it this way, "She seizes when she digests, when she poops, when she sees, when she hears, when she's hot, when she's cold, when she sleeps, and when she can't breathe . . . so basically, every aspect of her life triggers seizures."
Addie is back to planking too. Chris (problem-solver extraordinaire), however, has found that if he crosses her legs Indian style and secures them with the straps of her bouncer, she will relax her back and sit in her chair. She'll fall asleep once her legs aren't stiff, so that position has been a real gift for her and us. And lastly, with all this energy expended, weight loss is a bust. She is having such a hard time keeping her food down.
Oh, what to do? Just hold her a little longer, rock her in figure eights, sing lullabies, pray for guidance and angles to attend, and shower her with kisses. Our motto, "No one seizes alone." We are so blessed to be able to attend to her night and day so we can live by it. Thank you for your sustaining prayers during this emotional roller-coaster ride.
