Jan 27, 2007 Latest post:
Sep 10, 2012
10/5/05 Gabi went from Loving independence to requiring uninterrupted 24 hour care.
Gabi's illness showed up in the form of seizures. From the first day, the seizures proved to be life-threatening for Gabi. Consistent with days to come, Gabi stopped breathing with this first episode, requiring emergency transport to Spartanburg Regional’s ER. Around 14 trauma team members worked on Gabi while they feared the worst. She was finally stabilized, and airlifted to the Pediatric ICU at Greenville Children’s Hospital (GCH). We were told that she would need to be on medication to keep from having seizures in the future. Gabi was medicated, then medicated some more, then more. Still, she was seizing up to 13 and 14 times a day. We were performing CPR to keep our daughter alive almost every day. The medication increased at such a rapid rate that soon Gabi had lost all of her bubbly personality and was simply, existing. We had to feed her baby food again and she was back to drinking from bottles. She lost all of her vocabulary and could no longer, even sit, alone. A muscle biopsy was taken at Duke Medical to look for a metabolic disorder and we would wait 13 weeks for results. In the mean-time, some part of every week was spent in a hospital. Very often, Gabi required urgent care at Spartanburg to stabilize her for the remaining distance to Greenville. The staff at GCH communicated back and forth with the Neurologists at Duke to care for Gabi each time she was admitted. Dr. Garber at GCH recommended that we see Dr.Morales, a Neurologist on staff there and assured us we would not be disappointed. Dr Agusto Morales came in to see Gabi that afternoon. He told us what he felt was going on with Gabi and ordered an EEG to confirm it. He felt that a medicine change was in order, and that Gabi’s EEG would support it. The EEG showed exactly what he expected and we began weaning her off of the wrong medicine, and onto the right one. Within a week, we began to see our beautiful Gabi coming back to us! She was smiling and sitting alone. At 2 weeks, she was taking a few steps again! 3 weeks, (with the exception of lost vocabulary and fine motor skills), WE HAD OUR DAUGHTER BACK!!! The feeling was greater than witnessing her birth! (We had this precious, little angel; all, but, lost her; then had her given back to us!!!) We were walking on clouds! Next, came 'the call' from the geneticist at Duke. We were told she did in fact have mitochondrial disease and essentially given a death warrant by the doctor. She believed the seizures were an indication that the disease was in Gabi’s brain and only a matter of time before other organs began to shut down. Grief counselors were sent in to help us cope. Jeanne calmly and nicely explained that we weren’t done, Gabi wasn’t done, God wasn’t done, and that we had a different report. We knew that Christ had already paid the price for Gabi’s healing (1 Peter 2:24). I won’t say that we have been ‘pillars of strength’ every second of everyday, but God gives us Grace when we need it. He pays close attention to every little detail to let us know that He is always there. Our ‘wonder drug’, however, ran it’s "honeymoon-course", as have so many others since then. We have been able to enjoy our sweet daughter through it all though. With Dr Morales on board, a careful watch is kept on Gabi's personality. He's quick to consult other doctors with more wisdom, or experience in an area. (It’s such a blessing to have a doctor without an ego!) Yes, the drugs alter her personality and leave her, either too hyper or, too groggy, but, never so much that we don’t see "Sweet Gabi" peeking out from behind. Unfortunately we have exhausted all of the available drugs and without our faith, would face a bleak future. Over the past 34 months, Gabi has bravely fought to live. She walks beautifully one day and can’t even crawl the next. She plays, eats, and laughs one minute and fights for her life the next. We, along with her brothers and sisters, take turns ‘watching Gabi live’. We don’t look away more than a couple of seconds at a time. Too often, there is no warning and our next moments are spent giving rescue breaths and chest compressions, or racing to an ER to see that Gabi lives another day until her miracle arrives. She continues to smile at everyone in the room as she opens her eyes to live again. Although she lives with pain we could not begin to imagine, a day never goes by that she doesn’t add joy to our lives. She made the trip to Boston to visit Harvard Medical where she underwent countless tests including a 2 week video EEG. The leads used for the EEG dug into her skin and left sores all over her head. Most of her hair fell out as a result of that and her seizure meds. She faces surgery to repair a fistula, regular trips to Boston for monitoring, and blood tests twice a week. Without the Hope we have in Christ it would be more than we could bare. Please agree with us in prayer as we thank God for Gabi’s healing and follow along as we watch that unfold.