Oh, little Trey

Trey and little brother Cody - Best Buddies

We got back a few weeks ago from visiting Pennsylvania. We were there for a seminar and evaluation for Trey at the Family Hope Center and a second medical opinion about his seizures at CHOP (Children's of Philadelphia - #2 Pediatric Neurology in the country). Thankfully my family lives fairly close, so we got to stay with them for the two weeks we were there.

The Family Hope Center (FHC) sees Trey's seizures as a symptom of a brain injury, which could stem from anything from lack of oxygen, vaccines, viruses, trauma - pretty much anything, you name it. They try to get to the root of the problem - within the brain itself - to fix and repair the injury and get his brain neurologically organized to hopefully stop the symptoms of the injury - the seizures. The way this works has a lot to do with "neuroplasticity." There is a great book called, "The Brain That Changes Itself" that illustrates stories of how this has changed the lives of many people. It is very fascinating and explains how our brains adapt, prune, and grow new neural pathways in response to stimulation. The seminar at FHC was equally fascinating and made a lot of sense. I learned a lot about child development that I never knew, despite the many books I have read. They sent us away with an at home nutritional and neurological program specifically for Trey to stimulate, mature, develop and organize his brain. They said the program should also help with hyperactivity and any behavioral issues as well. This is our first week of doing the program with Trey and he really enjoys it. I am struggling a bit trying to keep Cody occupied and included but sometimes he wants to be a pill and get attention the negative way. :) I'm sure we'll figure out a plan as we go along as far as that goes. Thankfully Kirk works from home and helps out a great deal on his lunch break and before/after work. Keep your fingers crossed that the program strengthens that little brain of his to the point where he can ward off those stinkin' seizures!

The visit to CHOP was good. Thanks to a few strings pulled by a wonderful friend who has walked in my shoes, Kay Gleason, we were able to get in for an appointment while we were out there for the FHC program. We had a wonderful and caring doctor (Dr. R) look at Trey and all of his info - EEG, MRI, etc. She looked at the MRI and agreed with the radiologist who read it the first time - that it looked normal. Our doctor in Denver told us that it was NOT normal despite the radiologists normal reading. He told us that Trey was having brain atrophy on the left side b/c one side looked smaller than the other, however Dr. R told us that his head was merely turned in the image, giving the appearance that one side was smaller than the other, when in fact it is not. Well thanks to Dr. L in Denver for taking 10 years off of my life with that hideous, incorrect (hopefully) information he gave us!! Geez leweez. She also told us that there is a possibility that Trey has Cortical Dysplasia - the diagnosis that Dr. L so quickly labeled Trey with, without any solid evidence - but that there is no way to diagnose him with the condition at this point with the information that we have. From the info we have, she said he does not necessarily have that - and we are really hoping he doesn't. She also felt Trey was on the wrong medication (Keppra) for the type of seizures he is having (no wonder it wasn't working). She gave us a script for Zonegran - which we started 6 days ago. We are not yet seeing an effect, but are hoping to soon. Hoping, hoping, hoping - that's all I ever do. Well, that and cry. Ha. Trey has about 6-8 seizures a day on average and they need to stop! My heart can't take it anymore. I am always hopeful that the day is nigh upon us that they will stop. PLEASE STOP!! I'm sending positive vibes out into the universe..............

I hope this blog can keep everyone updated well on what is going on with Trey. I know many of you have wondered but I have been so preoccupied with our situation that I have been terribly bad at keeping in touch. I am sorry and I miss you all - family, VA and PA friends and all those scattered across the country - and that little adventurous family out there in Jordan! Please keep Trey in your prayers.