clarification

so ... after reading some of my last posts, I find it necessary to explain that I write these at night. After midnight , when all is quiet and my mind is jumbled. Hope Ya'll understand ;o)

and then...

We ended up in the hospital. Last Wendesday ( and yes we felt that darn earthquake )at Alex's nuerology appointment he started seizing. Thank goodness his DR is adjacent to Childrens hospital in Akron. They transported him right into a room and attatched a video EEG while he was seizing. From 5 until 9 , alex averaged a seizure every 4 minutes. At about 9:45 he developed a seizure that he could not come out of on his own. We gathered some valuable information during that time! Its the worst feeling in the world to see your child's body being racked with seizures but on the flip side , its exactly what we needed to have happen . I would like to have his EEG have shown some different news but it didn't . When he is seizing , it is all over his brain, not localized to the left or right. These kinds are much tougher to treat. We are now using a medication similar to Ativan , called Tranxene , to help regulate these "thunderstorms" in his brain. Its really more of a tranquilizer , but he has reacted well to it. We are down to 1 seizure a day so far... if by some miracle that holds true that is tremendous!! Some of you may be asking ... a tranquilizer? yes shockingly so! When he has gone into the seizures in the past, we have used Ativan in his IV to snap him right back to us. It works by decreasing unusual brain activity. After seeing Alex's EEG during a seizure , there is a huge amount of that happening. In fact , he seemed to be the talk of the nuero department as they had never seen such an incredible reading of brain activity . One doctor said it was like having a category 5 hurricane inside Alex's head, or a 9 or 10 on the Richter scale .
I know I need to take one day at a time with this. Alex's seizures are sneaky and sudden. He has strict orders from his nuero to do nothing unsupervised at this point. But having stayed on the 6th floor of the hospital for 3 days , I am humbled . There are so many other children with just devastating diseases and conditions. We will be ok , Alex will rise from this. The young girl next to him passed away while we were there and that was a an eye opener for Alex. He wept and prayed for the family. They filled the halls sobbing and it was almost more then I could take, my heart overflowed with what they must have felt. ahh yes.. I am humbled, overwhelmed and so very greatful for all my friends calling, emailing and praying for Alex.

The truth is ..

I am mad. Not the average mad, a deep brewing anger that engulfs me. I want to believe that somewhere inside is a measure of happiness. I can't find it right now. Our lives have been consumed by seizures. It has stolen not only from Alex, but everyone that loves him and knows him. I don't expect people to understand anymore, it borders on the brink of insanity.It breaks my heart that he isn't able to experience the simple joys that kids treasure. No sports, no driving, no amusement parks,no sleepovers... the list goes on and on! I've spent so many blogs ranting and raving about the things he can't do , I'm just beyond livid to a completely unhealthy level of rage. The guilt of having 2 younger sons that I feel as if I'm not there for is overhwelming and fueling my fire.
Our lives have changed so much over the last few months. Doug is on extended family leave, with Alex's increase in seizures Doug is just about the only person that can handle him when he shakes and convulses violently. I wonder; what do other families do when this happens, am I the only person in this situation? its a stretch to go from Doug's income to just mine. The health insurance we have is ok, but when your in the ER every week with a hefty deductible each time , it tends to pull. Not to mention weekly trips to Akron. Some day's I feel as if I am going to explode with rage , and utter helplessness. I am certain my knee's are raw and bloody from hours of prayer for answers and help.
Do I know that there are many other people in worse situations? YES. It doesn't make seeing your child suffer any easier. When is enough ....enough?

Lots of Updates!

The last few weeks are screaming by! I can hardly believe its summer and my kids are advancing yet another grade, now I've got 3rd, 6th, and 10th . Incredible!
So heres the long and short of it. Alex had yet another seizure this past Friday that resulted in being escorted by the Navarre PD to the Massilon ER , if you hear Andy tell the story , it goes something like this.. "dude we were going like 110" . Not quite the truth but close. A person doesn't have much of a choice when your in a car and someone has a seizure. I think the Navarre PD probably thought we were into some sort of criminal activity.. lol. They were awesome though! Zooming Alex through lights and getting him the ER in record time, I will always be thankful!! I wish I had answers for his seizures. I don't . They will be testing him soon for something called "Fragile X " He has most of the symptoms of this genetic disorder but a complete blood test and chromosome profile has to be pulled and examined to be sure. Doug and I will have to be tested too.
Andy and Aaron have been playing baseball , when its not raining that is. I've gotta say that the parents are so annoying sometimes. I wish the kids could just play and let it be that. I think I say this every year too!
This weekend was just a time to unwind, some very good friends of ours had a cook out tonight and the boys just got to go hog wild! I love days like this!

yes! I am alive

Call off the search party... I'm alive and kickin! I haven't abandoned my blog completely ...just long enough to catch my breath. Things here have been beyond chaotic, tis the season I suppose. Andy and Aaron both have 2 baseball games per week, and Alex has his Bowling team and Guitar lessons every week. Over the past month we have been doing extensive testing on Alex , trying to unravel the puzzle ever more. For the last few years we were told he had an Autism spectrum disorder, finally they do the test of all tests on him -- called an ADOS test for those of you who might be thinking about it... I say do it. --- It opened our eyes on how, when and if he functions. I've taken him to Akron childrens once a week for nearly the last 2 months. I hate the drive but think the care and progress is worth the 80 mile one way drive. Today we were there for an updated EEG , I had 2 1/2 hours of people watching while he was testing and wow... there are some intresting people out there. Thankfully the starbucks was open inside the hospital. Now if something were to show up on the EEG I would thrilled, sometimes.. anything can be the missing link so I am hoping for a strike of luck !
We are also looking for another house, a one floor plan that will accomodate Alex a little better. These seizures show up and the darndest times with his age and size I need to have him under my nose as much as possible. He would often time seize and fall in the shower, or down the steps and it made us think perhaps one floor living will have to be for us. Doug has plans on building a triple bunk bed for them. SSSSHhh... dont tell them !! but its not a typical triple bunk set, much better!
I've kept them all sleeping together so the other boys can alert us if he should seize, these new improved beds might help :o) ]
I guess thats it, busy as usual these days.
So thats it, just plain busy in these parts of the woods.