Thursday, July 10, 2008


It's late and I've been busy wrapping my head around the events of the day. There has been lots to come to terms with. Lane is not yet epileptic. The doctor said that after two unprovoked seizures, then they will diagnose. Lane has had one. His first seizure was brought on by a fever and if diabetes or a fever causes the seizure, then it doesn't count towards epilepsy....they said that he will go on meds if they are more frequent but won't medicate for a seizure every two years because it will do more damage than good. She said meds are hard on organs...hard on the same organs as diabetes. Double whammy. We will have an MRI done in about 2-3 weeks and an EKG done soon for the episodes of his heart "beeping" so's happened 3 times in the last few months and it's beating so fast that we can't get a good count without a machine or some kind of real training on how to do it right. Then in 6 mos we'll get another EEG done to see what it says about his brain activity. They said the "spikes" in brain activity that cause the seizure or make it more likely to come on, is in the back right side of his brain. This portion controls the vision and that's why he couldn't see us and could only see his hallucinations. She also said that it starts there and then spreads which is why it's partial, because there aren't spikes in the left and right...I'm not 100% on that info but she called it a partial complex seizure. She gave us information on the med he is on for when a seizure lasts more than two minutes and she told us what to do during a seizure. All good info. Which brings us to the part of the day when I realized my little boy isn't healthy and Ethan may need a healthy sibling, so Todd and I are going to have to talk about some options we want to utilize.

Dad is still hanging in there but the doctors expect it to be tonight or tomorrow at the latest. I don't speculate but his blood pressure was something like 86/37 tonight before his bath. That just seems awfully low. I love this man but he's suffering so bad that I feel torn. I feel bad because I feel selfish that I don't want to let him go but I feel like I need to so that he can let go on his own. I don't want this to be more miserable than it already is. My siblings are here...well most of them. Lou is in from NY and this is really hard for him and his wife. They have there three kids here and it's just a hard situation for them. I wish this was easier for them. Gina is here and she has three kids here most of the time. This is equally as hard on them. Heather lives three blocks away and has been in the family for about 4 years now...she's missed out on a lot of time with Dad...I feel really bad for what she's missed out on. And my Dad's sister Dina is here from PA trying to do what she can for all of us. Her daughter and granddaughter also came to help and it's been nice having them around. I wish I could make this easier for everyone but I can't even make it easier for me, let alone them! I just wish I knew what to do!


Sarah said...

What do you say, life just really sucks at times. I know that I don't have the faintest idea of what you are going thru at all and I don't want to pretend I do. It is hard on everyone in your family I'm sure, but you can't take on everyone's hurt. You need to focus on yourself and I know that is hard for you to do. You don't have to always be the strong one, you don't have to carry everyone on your shoulders. You're gonna need your moment when you finally just break down and let it all out and when you do, I'm here for you. I'm here to just listen and sit quietly if you would like. I'm here to talk or I'm here to get you shit faced drunk if that is what you would like. Just try not to bottle it up and take on and everyone else too.
As far as Lane, once again life can really suck. But Lane sounds like one strong little boy and I'm sure he will survive and not let it hold him back at all. He will grow up to be an outstanding man and that will be b/c you raised him that way. He sees that you don't let things get in your way and you don't quit just b/c things are tough.
Lynne, I am here 24/7 for you. I'm a great listener. Lots of love and prayers are sent your way!! Please let your mom know that too.