Exhaustion

First and foremost, we are ok. I know some of you may have been worried not hearing from me in a while, we've just been extremely busy the past two weeks. And Joshua pulling the keys off the old keyboard did nothing to motivate me to type either. But alas, I'm back to it and will try my best to let you all know what's been going on.

As most of you know, Josh left about two weeks ago for Malaysia. He will be gone for three months. Three very long months that include, his, my and Joshua's birthdays, Thanksgiving, Christmas and New Years. I know right? :( He is doing well. Didn't care for the long travel, but he's enjoying his time so far. Thank God, because when Daddy's miserable, everybody's miserable! hehe We miss him so much, and it's been very hard to communicate to him because the internet sucks where he's at. He finally bought a phone so I can actually hear him when he talks now! By the way, today's the old man's 30th birthday.. So happy birthday from the three of us. We love you and miss you!

So my man has been doing well lately. Knock on wood so I don't jinx it, but he's been doing pretty great all around. He's still eating, and loving it. Not drinking that well, but that's probably my fault for not working with him enough. He stood up (in his stander) for about 45 minutes the other day, which is by far the longest he's tolerated so far. I think he'll be trying to pull himself up to standing position soon. His legs are so strong, and he enjoys standing. If only he had better control of his upper body/torso area, I think he might be there already. But like my friend Angie said tonight, before I know it, he's going to be running everywhere and I'll be running after him to catch up. (I can't wait for that day!!)

A couple of weeks ago, Lucas had this terrible raw skin/blistering around his feeding tube. I called up Trip's mom and asked her advice for something to put on it, and she sent me a care package of awesome bandages and creams. The blister cleared up in no time. When you're in our situation--having a child with special needs--you really meet some truly amazing people. People you can call up anytime, and even though they have their own problems, they will do everything they can to help you too. I finally caught up on her blog last night, and she's been having a bit of a rough time lately. So please, say an extra prayer for them when you read this.

Last week, I finally got the test results from the sleep study. It's only been like two months or so, and the nurse never even called me with the appointment. In fact, if I wouldn't have answered the phone for the appointment reminder service the Saturday before, I would never have known about the appointment. That is so extremely frustrating. And to top it off, the test didn't really show anything. Go freakin' figure. He told me the morning after the sleep study that the seizures were coming from the right side, but when I went to his office he said they were from the left. (I'm pretty sure the right side was the right side ;) because he didn't have the paper in front of him at the office to verify. And I was watching him read the EEG at the hospital) He also said that the seizures were not coming from one specific point in the brain, but from many different areas. It would start at one point (on the right side) then spread over the entire brain, and then fade out in the place it started. For example, one started in the front right side of the brain. As it continued, it then covered the entire right brain, and at the height of the seizure, covered the entire brain. As the seizure faded out, the left side "dimmed" first, then the right back until finally the place where it originated was gone. The second seizure recorded started in the back right brain. He also told me that he thought if he would've caught another seizure on the EEG, that it would've probably began in a different place than the first two.

This is not necessarily a good or bad thing. But, it does mean that they still don't know what was causing the cluster of seizures he was having. And we'll probably never know. UGHH He was very surprised that the seizures stopped on their own, being that we didn't change the medicine from the time of the seizures until it stopped. So obviously the medicine he's been on is not/was not controlling his seizures--at least not the breakthrough ones. After some research, I found that even though a child's medicine may stop the seizures while he's awake, sometimes he can still have seizures when they sleep, or during a certain period (maybe overexertion from therapy, when they're sick and the immune system's low, etc.) and these are what are considered breakthrough seizures. The doctor did tell me that when we go back in three months, if Lucas still hasn't had any more seizures he's probably going to start backing him off his medicine. I don't know if I'm ready for that.. The other doctor told me that he had to be seizure free for at least a year before they'd even consider backing him down.. It just makes me nervous thinking about this. But I guess I'll worry about that more in three months.

Well guys, before I make this entry way too long, I'll cut it out for the night. Besides, I'm so tired and Joshua will be up very early in the morning--even though he's not asleep yet. That boy just does not stop. From the time he wakes up, until the time he goes to sleep, it's GO GO GO. Now you know why this is titled "Exhaustion" :)

Love y'all!