Neurologist Appt.

We met with the neurologist, who decided that E. was probably in fact having seizures. The spikes in his EEG coupled with his self-reports of momentary bouts of dizziness and disorientation (lasting a couple of seconds at most and happening up to a few times a week) led her to believe that he's experiencing seizure activity. In order to be sure, he could be monitored for 24 hours a day in hopes that a seizure could be recorded, but there's a high probability that we wouldn't even be able to time things right and nothing would be documented. In the end, the odds are that it would just be a waste of everyone's time.

The anti-seizure medication (Dilantin) that E. is currently taking seems to be doing a good job keeping the seizures at bay, but the problem is that Dilantin isn't an ideal medication for long-term use. Long-term side effects can include dental issues (specifically regarding the gums) and bone disease (specifically weakening of the bones). Since it looks like E. could potentially be on anti-seizure medication for the long haul ... like twenty or thirty years! ... it's time to switch to a different medication. Enter Keppra. With these anti-seizure medications, it is not a simply as stopping one and starting another though.

E. will begin taking the Keppra by taking one pill each evening for five days, while continuing to take the Dilantin. He will then take one in the morning and one in the evening for five days. Then one in the morning and two in the evening. On and on it goes until he reaches three pills in the morning and three pills in the evening. Once he's reached that dosage and stabilizes there for a few weeks, we'll touch base with the doctor again. Then, after a couple of months, he can begin to wean off the Dilantin. It is quite the process.

Of all the anti-seizure medications available, it seems that people tolerate Keppra the best for long-term use. Approximately 15-20% of folks though seem to have increased moodiness and irritability. Cross your fingers that E. is in the majority, not in the minority for this statistic.

The neurologist was optimistic that the Keppra would be all that was needed to keep E. seizure free. She was not surprised that he was experiencing seizure activity, considering all that his brain has been through. There isn't really much follow-up needed other than monitoring the medication, and another EEG isn't even foreseen unless there are some drastic changes. The doctor did mention that in periods of severe stress or illness, E.'s seizures may increase in intensity or frequency. If that happens, there's another medication that he can take to help through those times as well.

Next up: Texas. It snuck up on us this time, but it's almost here again. All day of travel on Tuesday the 1st, all day of tests and scans on Wednesday the 2nd, doctors' appointments the morning of Thursday the 3rd and then home that evening. As always, positive vibes, good thoughts and prayers are appreciated.

Borrowed Time

It was two years ago yesterday that we first heard the word "cancer." When we were scrambling to find out everything we could about that horrible beast called esophageal cancer. When we were learning about PICC lines and ports, chemo drugs and radiation treatments, medical providers and insurance red tape. When we were discussing the possible need for feeding tubes, hospitalization, and palliative care. And when we were told "less than two years."

So, two years and one day later, E. went out to lunch with some guys from work. He was late and they had already ordered, so he mooched off a piece of pizza and some chicken wings. Pizza and chicken wings! Two years ago, we were talking about feeding him through a feeding tube! And certainly not pizza and chicken wings! When I picked him up, he was still a bit hungry and I was staaaarving, so he indulged me in all-you-can-eat sushi. What a combo, eh? Pizza, chicken wings and sushi!

We had some enjoyable conversation, awesome sushi and great entertainment. Anyone who takes a two year old (yes, Peanut will be two in a few short weeks ... gasp!) to a restaurant knows that they bring their own entertainment with them ... waving at strangers, spilling miso soup, retrieving Lego men from under the table, blowing bubbles in his drink, yelling "GOAL" loudly at the television with his arms in the touchdown position every time he sees a ball on tv (ANY ball - football, soccer ball, basketball), climbing in and out of our laps, and throwing his arms around our necks in tight bear hugs while giving us big, slobbery smooches. The best entertainment in the world, I'll tell ya.

We know others that have started this journey at the same time, or even after us that haven't been as lucky. It doesn't always make sense, but it makes us all the more thankful. The time that we do have, that all of us have, is dang precious. There are so many moments worth treasuring that I want to permanently sear in my brain for safe-keeping so they are never forgotten. It may seem like just another lunch with a rambunctious toddler to you, but to us, it is a beautiful life. A beautiful life that two years ago we weren't so sure we'd be experiencing.

From here on out, I guess E. is considered to be living on "borrowed time." Time that we will surely continue to enjoy every minute of.

S.