Sorry, Betty, Again

Today is the first time since we've returned from NY that I have spent any significant time on the computer. I know, I know. Adjusting to being back (which does not include even checking my e-mail), taking turns with varying degrees of illness, and then having some snow keeping Marc working from home a couple days combined with my typical internet avoidance resulted in the long absence. So without further a due, here's the news:

First off, we are all finally feeling better. Marc had a stomach thing followed by an upper respiratory infection (URI). Lucas also had a URI and it held on for almost 2 weeks. After they both were almost back to wholeness, I got sick.

Being that the surgery is still on hold (for both the eye and the boy parts), I felt the need to follow up with those doctors. We saw Dr Lueder, the ophthalmologist, first. He said that we should continue patching an hour a day. The surgery can wait. He said that there is no indication of any loss of vision, so that is good news. He also said that Lucas is a bit near sighted in one eye and far sighted in the other. The discrepancy isn't enough to require corrective lenses at this point, however. I feel like this might help to explain some of his apparent struggle to focus on anything unless it is within a certain proximity: falling, for one eye, close enough and for the other, far enough so that both eyes can be put to good use. :) Dr. Lueder said that we can schedule surgery at any time and come in for a pre-op appointment, but if it doesn't happen within 9-12 months, we should come in again just for a regular exam.

We saw Dr. Austin, the urologist, the following week. He also said that Lucas looks great and that we can schedule surgery any time within a year without need of another appointment. If more than a year passes before we are able to schedule the surgery, we should schedule a pre-op appointment first, but he's not at all concerned. He said he's fine with doing the surgery anytime, though he would prefer to do so before adolescence.

We, of course, are praying that we will be able to schedule to surgery much sooner than a year from now and certainly long before adolescence. We are waiting for the all clear form the neurologist, Dr. Burris. He wants Lucas to be free of seizures for at least 2 weeks before scheduling. Since removing the clobazam (the Canadian drug), we have seen, Praise the Good Lord, a decrease in seizures! He is still having a slew, but probably 20-30 less per day at least. We also have hopes that his talking will again begin to progress.

We have scheduled the 23 hour videoed EEG at Children's hospital for the 11th of February. We will arrive at the hospital around 0830 and get registered and get Lucas wired. He will have a little back pack holding the monitor. We will keep our typical routine as best we can and stay over night. (Marc will likely be at work all day, but will come after. He will go home to sleep, but I will stay at the hospital with Lucas.) We will then be able to leave "sometime" the next day. We will have a follow up appointment with Dr. Burris 2 weeks later. We don't know where he might go from here, but we'll let you know.

Also, there is a Doctor Marc read of who does research out of Chicago on one of the apsects seen in Lucas' brain, polymicrogyria. This is the likely culprit causing the seizures. He will look at MRIs sent to him and give an analysis. If he thinks Lucas would be a good candidate for his research, there might be some testing and I don't know what all exactly, but it is something we are looking at doing.

Lucas also got his new Pacer gait trainer. (It is a fancy-little-kids-teach-you-to-walk-walker- thing. ) He only got it last Thursday, but is already doing really well. He doesn't seem to mind being in it and is able to scoot himself a bit, backwards of course without help, but if we prevent him from going back, he will go forward. It will be a process, as everything, but it is a very exciting beginning.

That is about all for now. We'll get some pictures up soon so you can see Lucas in his new bow flex, as my mom likes to say. :)

Blessings and love and thanks for standing with us, with our amazing little boy. :)