Our family is thankful today, as we are each day, for so many things God has blessed us with. We were blessed to spend the day with our friends, the Longes. Watching Matthew there, at their home, is such a blessing for us. He is so comfortable and at home with them, what a wonderful thing to have people beyond your family to share such a deep bond with. Besides that, the food was fabulous!
We've been in a rough patch recently. Matthew woke up Halloween in the early hours to a powerful seizure that lasted so long we called Emergency. We spent the day at San Antonio Hospital as they waited for a bed to become available at Children's Hospital of Orange County. The phenobarbatol was nearly out of his system after 21 months but it seemed that the medication he was still taking wouldn't be enough to keep the seizures at bay. Matthew's epilepsy is more evident than we had hoped. At C.H.O.C. they introduced a new medication and monitored him for the next 4 days before he was discharged. The time at the hospital was restful, after all of our experiences we are so appreciative of the care he receives when he's there.
Back at home it remains a struggle to keep up with school and attend therapy at Loma Linda three afternoons a week. We remain so grateful for Rancho Cucamonga High School, the teachers, administrators and staff there continue to be so supportive and understanding. When the doctors first told us that Matthew's recovery would take a long time, I don't think that even they realized how very long it would be. The school has not faltered in their care and concern for Matthew. The confidence we have when we take him each day is never taken for granted. We know he will be monitored and cared for by many members of the staff.
As the phenobarbitol leaves his system, counseling decided it was time for their version of "tough love" and the reality of all he's lost all came crashing down on Matthew at once last week. His pseudo seizures morphed into a new, more physically painful version. He began having attacks that seized his body, each and every muscle into excruciating knots. The muscles in his face all the way to his feet obviously contracted and twitched, he cried out in pain and fear and we had no idea how to help him. These came in waves and lasted several minutes each time. Eventually his body was beaten enough and he had a grand mal seizure. This has happened more than once now. It seems to be triggered by stress or depression. He fights the sadness, he says God is getting him through this and he's right. There's no other way we would have survived, I cannot imagine how anyone could face pain like this without God.
Matthew continues to work hard at healing. He's so brave, I am in awe of him when he gets up and goes to school without a complaint; even though the day before he's had pseudo seizures in multiple classes. At an age, and in a culture, where how things look to others is so important, Matthew still faces those kids and teachers every day. That's a tribute to both Matt, his peers and his teachers. He's in a lonely place now. For so long he heard from so many friends, but most of them have moved on in their lives. The vast majority are seniors, in a place where Matt believed he would be right now doing things he yearns for. We understand, but the isolation he feels is real and painful. Matt has always been so social, each part of recovery is so difficult.
Finally, Matthew is walking more now but his feet are showing signs of atrophy after so long. We hope to change his therapy schedule and add physical therapy back in to his days to help that. As we look forward to the holiday season we all can't help but think that we are approaching the two year mark now. We never thought that Matthew would not be back on his feet, be a junior instead of a senior and would still be waiting to be able to drive when all this happened back then. As this realization hits Matthew more each day he needs extra support. Please keep him, and us, in your prayers this season. We look forward to Tiffany coming home for the holidays when she finishes her first semester of school and extra time with the family. As Christmas comes we are more aware than ever of our faith, the strength we gain from our Father as we lean heavily on his to get through each day. May you be blessed this holiday season with joy and time with loved ones.