The Latest

It’s been a week or two of ups and downs. Let’s start with the downs, so we can end on a happy note.

 

Last week, Zane and I visited the neurology clinic here in town. The clinic is meant to ease the burden of having to travel to Denver for families in rural areas such as ours. This is the first time Zane has seen a neurologist since the infamous visit back in 2007 (a story some of you already know, which I won’t revisit at this time). In this case, the doctor was very kind and informative and didn’t make inappropriate comments. I know quite a lot about Zane’s medical condition and the peripheral complications that accompany it. I almost always go to his appointments well informed. This time, I pretty much entered things blindly, so the doctor brought me up to speed on Zane’s seizures, the effect they may or may not have on him, and the plan to control them. We have seen some occasional seizure activity with Zane since his medication dosage had been increased. However, the seizures seemed much more controlled than before. Despite this, the neurologist wanted to up his dose to the minimum in his range, as what he was taking was below that amount. So we did. He had some increased activity last Friday, which solidified our decision to go with the increase. But we immediately saw the side effects: lethargy, increased sleepiness, and moodiness (not a good thing since Zane is always so happy). So now we are back to playing around with the dosages with the possibility of changing medications altogether.

 

Yesterday, Zane skied again. The medication truly impacted his day. He slept in class before we left. He slept on the bus ride. He tried to doze off as the volunteers were getting him ready. He was moody; not at all his happy-go-lucky self. In fact, one of the ASA volunteers carried him in to me, fussy and crying, after only his first time up the mountain. Fortunately, I already had a call in to the NP. She said that these are classic side effects of the Keppra. Thus, the change in his dosages beginning last night. Zane’s ski day did end on a positive note. He came back from his final run of the day all smiles and laughter and pep. A lot of that had to do with the volunteer who skied with him. He is one of those few people who have made a special connection with Zane. It is so awesome to see them together. So I cannot thank him enough for bringing such joy to my little boy.

 

Finally, Zane went to the dentist today. The whole appointment was a non-event. Although, Zane tried to help the hygienist do her job by holding onto the polisher and grabbing the toothbrush. He drew the line at the floss, though, pushing her hand away when she tried to put it in his mouth. I’ll tell ya, the kid knows what he wants and what he doesn’t want. He has three new adult teeth making their way in. The Tooth Fairy has not seen a single one of those babies because Zane likely swallowed them all. It’s hard to believe the 3 pound 14 1/2 oz baby who was given only two months to live is now cutting his adult teeth. Way to go, Zane!