Tomorrow Ella is going for an MRI. This is the last test before surgery. After this, next week we have a pre-op meeting where hopefully, we will get more information about the process ahead; the logistics and timetable. We are also meeting with Dr. Black and Dr. Duffy to hear from them what they see in the test results and what the plan is surgically based on that. Ella is blissfully unaware of what lays ahead. The only way to go into surgery in my opinion. Especially this type of surgery. She has been doing very well these past few weeks. No huge strides forward, especially not with motor skills, but a steady increasing awareness of her surroundings, sounds, music and the discovery that almost all her fingers can fit in her mouth simultaneously. She is also very clever about managing to scratch herself ‘down there’ when being changed. At this point she seems to me to have ‘normal’ sleep patterns. She is no longer drowsy and out of it for long periods.
Could be that since we haven’t increased her medication, it is in effect lower than before since she is growing and putting on weight. Her body is probably more accustomed to it by now. I just hope that she doesn’t break into seizures before the operation, maybe she can hold on just a bit longer.
The looming date ahead is making it very hard to concentrate on other things, such as life. With the current state of things in Israel and the world, maybe that isn’t such a bad thing…