Imagine the delight your child fills your heart with. all that is beautiful and wonderful is joyously expressed through their smile. Jeffrey was that for my husband and I. Life was so-o-o-o amazing. However promptly in July of 1997 that changed within 1 minute. Uncharacteristically Jeffrey was crying, more like a deep painful moan out of nowhere. It was a Monday morning and we figured we would take him to the doctor right at nine am when they opened. Instead we made a mad dash when Jefffrey went completely paralyzed on the right side of his body. No warning, no symptoms. Our Pediatrician immediately sent us to the hospital where a Neuro doctor was waiting. Now admitted in the hospital and had a MRI Jeffrey was diagnosed with a cerebral hemoragghe in the pons of his brainstem. We were told he could die. All I could think was how is this happening, my sweet little son so coordinated and perfect, how could he be just lying there. We prayed for a miracle and asked others to do so as well. In Jeffrey's case any additional pain medication could be life threatening. His Dad sang to him constantly. His 9 month old brother Jake just clung to me while all the chaos unfurled. We were told that if Jeffrey lived he would most likely never do anything again. We decided to trust in our faith and believe for God to restore him. All his abilities were affected. Swallowing etc... We spent 2 weeks in PICU. Daily we saw him regain his abilities. Ten days after we left the hospital Jeffrey walked all by himself. Within a couple of months you would never know all this had taken place. We were told to consult a surgeon, so we did. Better to be prepared. We also were told that in every case of these bleeds, they always occurred again within one year. we rejoiced over Jeffrey's victory. His brother Jarod joined our family in May of 1998. In the back part of my brain and a corner of my heart I just didn't even want to think about upcoming July. 365 days after the first bleed Jeffrey went into a coma. Heartbroken but prepared. Our amazing surgeon Dr. Spetzler was able to successfully correct the C.M. Our time in the critical care was beyond description, suffice it to say we felt transported to another place. Maybe I will write a book one of these days. We spent some weeks up in Phoenix and then were transferred to Tucson. One step closer to coming home!!! Jeffrey had lost all gross and fine motor. He had a trach, and a g-tube. The doctors were not sure if he would ever progress from this non-responsive state. Once again we trusted our faith. We spent a few more weeks there. We got lot's of training on how to care for our son. Both St. Joe's in Phoenix and TMC in Tucson were outstanding in preparing us. We came home late September 1998, and it has been almost thirteen years since this adventure started. Jeffrey has had no more bleeds, his trach was gone before we left the hospital and the g-tube about one year later. He has done oodles of therapy and I considered it my classroom time. I went to every appointment with his 2 little brothers in tow. and took notes. We have done all kinds of therapy here at home. We no longer go to outpatient therapy, as Jeffrey said it"we do enough at home". He has had ortho surgeries, afo's etc... However I think when you glance at the pictures I have included you'll see Jeffrey is doing truly amazing. He is a near "A" student in his sophomore year of high school and does all the work everyone else does. He can walk on his treadmill by himself hands free, (I mom invented a piece of equipment that allows this), ride a bike, beat his brothers in wii standing up, ride his horse at trot, plays tennis and baseball and so much more. He continues to make progress and it is my absolute delight and privilege in helping him workout daily to reach his goal of independent walking and speaking clearly.
As you most likely already know these cavernous malformations are genetically passed on, not always, but in our case I (mom) was the carrier. Our third son Jarod has had a bleed as well. Just a couple of weeks into his first grade year(2005). He had surgery and all was corrected. It was in a less dangerous location than his older brother. Our middle son Jake does not have this genetic disorder. I am thankful to God for sparing him. Jarod is doing great in his schoolwork and is quite gifted in most every sport and is enjoying his 6th grade year. I honestly feel blessed to be Jeffrey's and Jarod's mom. We have learned so much. I hope our story will be an encouragement to someone out there. Our favorite song is by a group called Kutless, the song is "That's What Faith Can Do", it has encouraged us. Thanks for providing a place for us to gather.