The brothers eat gummies and pick late night movies to help keep Chase awake
Yesterday’s EEG -a test we were told would take 4-6 hours- lasted a full 8 hours.
This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.
For Chase, who was being video-monitored (in addition to the electrodes covering his head), this meant about a 2 foot range of motion on the bed…for 8 full hours.
Chase. Being still. For 8 hours. Ha.
Sleeping peacefully. An answer to prayer as sleep is an important component of the test.
Actually, he did incredibly well considering the circumstances. It was a grueling day for him and he managed it with a great attitude.
There are few things that a lollipop and coloring time won’t make better…even a head full of electrodes. 🙂
We haven’t done this test since the initial days of his diagnosis – haven’t kept him up late into the night since two days before we found out he had a tumor and I was amazed how going through the ritual again brought back the memories of those sleep deprived, scared hours when we first felt the dread of some unknown thing being very wrong with our little boy. And then the memories passed and we had a great sense of peace and even joy in the middle of the long night and day.
We hope to hear some results within the week and will be able to discuss a plan of action with the epilepsy specialist in early April. Thank you for your prayers.
Some time ago, I wrote about a very painful, very personal aspect of Chase’s post-diagnosis life: his aggression. At the time, it mixed with low blood counts, treatment pain, and seemed to be a general side effect of being a small person thrown into a world of superhuman tasks. But then the treatment went away, and the counts went up, and he grows stronger and healthier all the time, and the aggression stays. In fact, it’s intensified as his strength has grown.
Chase has always been a strong fighter. If I’ve said this once, I’ve said it a hundred times. This, we know. But, at times, there seems to be something other than personality fueling this fight. We watch him completely, violently lose his temper and then start crying because he knows he was wrong…only to lose it again a moment later and start weeping all over again saying, “I don’t want to be angry anymore! I’m so sorry!”
Our search to help Chase has led to the discovery that his anti-seizure medication is known for causing outbursts and aggression as potential side effects. In the months following chemo, we’ve spoken many times with many sources about his behavior and after having diligently pursued natural and behavioral options, have finally come to the point of doing an EEG.
So, on Monday, Chase will be going to the hospital for 4-6 hours of continuous EEG monitoring. The goal is to see how his brain is doing and to determine if switching his anti-seizure medication – or weaning him off of it entirely – is a possibility.
A very real concern is that Chase’s brain -which has never not been protected by an anti-seizure drug- would, if weaned, react to the trauma it went through almost two years ago (and the scar tissue around the tumor site) and that such a status change could actually cause seizures and more brain trauma.
We’d greatly appreciate prayer for wisdom and discernment – for us as Chase’s parents, as well as his doctor to know what is just Chase’s personality, what is a side effect of brain trauma, what is this medicine, and how much, if any of it, can be fixed.
Chase was born to fight. Our desire as his parents is to optimize his life on this planet and provide an atmosphere in which he’s able to channel the fight.
God, give us grace to accept whatever is ahead on this particular road…
