Note to Self...
Mood:  surprised
Note to self...Don't EVER Say the following words out loud (EVEN IF YOU'RE THINKING IT)..."Things are pretty quiet around here."!

You'll see that my last blog entry a full month ago, says those words...AYE YI YI! In the past month, Jonah is back on his B6 (after over 4 weeks off of it and a somewhat surprising return of his seizures!), having some fun behaviors, Sam hasn't stopped screaming at me for a couple months now (I'm beginning to think its a side effect of the Keppra?) and about a month ago, we were dilating Sam's eyes at home, as he, with his seizures, can't have the regular eye drops they use in the doctors office, and he had a systemic reaction to the atropine eyedrops. Boy, that was "fun"...but it passed. But not without some skill loss from all the seizures (He is walking better now, still kind of clumsy, and he is beginning to feed himself again, I was loving the regression and him just playing with his food...ugh) So, little did I know, these things were actually SMALL... He was admitted to the hospital because of the anticholinergic toxicity syndrome (toxidrome) and by the next morning, he was ready to be discharged. We were just about ready to go home when our world came crashing down around us. The doctor (the kids' pediatrician is not on staff at our closest hospital, and we had to go to the closest because Sam was a very sick little boy at that time) came back in to Sam's room and told me that we need to have a bone scan done on Sam right away because one of his blood tests came back critically high and the only thing it can be is a bone malignancy. (Can you hear the world crashing?) I kept my cool and then called the pediatrician, had the nurse fax over results and we went straight from the hospital to the lab to get blood work done. Due to an unbelievable comedy of errors, to this date, we still do not have the results of the test we need. We went in just this morning to have the correct test done (after 4 tries) and I kept telling them today that "We are here for a repeat alkaline phosphatase and we need the isoenzyme defractionation done with that!" Yes...I told everyone who would listen...LOL...NEED it done. I'm pulling my hair out...but I am doing better now. Sam seems fine, other than the intolerable screaming at me all the time (which started getting bad about a week after he started on his regular dose of the Keppra). His alkaline phosphatase was, to begin with, over 7,300. Upper limits of normal is about 350, and an elevation up to around 400 could be normal in a kid going through a growth spurt. His alk phos is going down, just not nearly fast enough for my liking! So, in my simple thinking, if this were a malignancy, it would not be going down on its own, without treatment. His liver enzymes have remained normal, so we really need the defractionation to find out if its coming from his bones or intestines...an after effect of having had rotavirus several days before the medication reaction. So...we shall see. The lab people assured me that the correct test was being done and now, with any luck from the lab gods, we will have results in a few days.

OK, so that's what's been going on in the last month. Not much else...definitely NOT been quiet. More later!