Be Still, and know that I am God

"Be still, and know that I am God..." ~ Psalms 46:10

Since I am tired of falling to pieces every time Trey has a seizure, I thought I would try praying instead. I should have been doing this all along, but today, I prayed when I felt like crumbling (I still kind of was) and as I did, this scripture came to my mind. Be still, and know that I am God. It was actually a song that I had heard before that came to my thoughts - so I looked it up on the internet so I could listen to it. The song is by Hilary Weeks (I love her music!) and I just happened upon this video in my search. I love it and I hope you enjoy it, too!

Count Your Blessings

"Focusing on what is wrong can cause us to miss everything that is good."

I know this to be true. I've been, for the most part, missing everything that is good for the past 7 months because I have been dwelling on one (BIG) problem. It is July - and I hardly remember anything about these past months except for the fact that Trey has been having seizures. Cody is at the cutest and funnest stage of a child right now and I feel like I am missing it in a way because I am so focused on Trey. ATTITUDE SHIFT NEEDED!! Trey is doing extremely well despite his seizures. Of course it is disturbing to see them every day and it is extremely hard to focus on the good when you have a huge problem presenting itself almost every hour of the day, but there is a lot of good in my life. Trey and Cody are beautiful, happy and fun little boys. I still have a lot of hope and faith that Trey will be healed of this infirmity - hopefully sooner rather than later. We still have quite a few tricks up our sleeves to beat these phantom bullies that I wish no child would ever have to live with. We keep praying for him and hopefully one of these days our prayers will be answered.

Watching over Trey

I like to think that He is watching over Trey (well, both my boys for that matter), just like this - while he's asleep and awake. I know He loves Trey - I just hope and pray he has it in his plans to heal my little boy.

Divine Help

"You never learn that Christ is all you need, until Christ is all you have."
-Corrie Ten Boom

I do feel like He's all I have right now - maybe this is a lesson I need to learn. Of course I have Kirk, but we're both so entrenched in this that it's hard to even see beyond our noses. I have always wondered why this had to happen AFTER we moved away from many of my close friends and some family - people who know me well and could have supported us in our time of need. Surely He could have manifested these seizures before we moved, and then we would have just stayed since Kirk works from home anyway. I've made a lot of nice new friends here, but I don't know many very well yet since I haven't had a lot of time to GET to know them with everything else going on. So, alone I feel, but Christ (along with Kirk) knows me better than anyone and understands my struggles, fears and worries. Maybe this is a message that I need to develop these two relationships (as well as my boys) - the two most important ones - onto solid ground.

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.