11 years of watching

can be slightly draining. Watching for change, the next thing, debating normal versus possible abnormal. Picking up the fallen child, picking up the many pieces, trying to fit those pieces continually into one everlasting puzzle.

but even then, even with some concerns on minor activity, I never thought I would need to buy this:

but it seems I do. Well they think I do. The outcome of this weeks Paediatrician appointment who had conversed with the Neurologist is that the activity last week and during august may be seizures, they may not but the description sounds like they are. Why now? They don't know. Yes her underlying condition makes her more subseptible but sometimes they just don't know why. She will have a sleep eeg next friday but even if it shows nothing which is not uncommon even with activity they will treat for it. So now her new medications previously for migraine relief are being gradually upped to epilepsy levels.

Good right? It means they will be treated, be kept under control. And if not, we raise the levels again. Fantastic. Great. Whoopy doo.

what it means is something else wrong with my baby, something we didn't mentally prepare for and something else we have to watch for, pick the pieces from and find their rightful place in her puzzle.

Some of you will not know what was said, as above, on Wednesday because I haven't shared with my family or non SK friends yet because I just haven't been able to get my head there. I have kept myself full-time busy since then. Now I have a couple of hours to cry and grieve a bit over it because it is breaking my heart but not too much, I just can't go there and I just can't talk about it with people right now.

I just hope the side-effects from the medications do not strip away her beautiful funny personality.

In the meantime, I am concentrating on another bit of her puzzle. Her increasing pressure sores on her feet. Let's get rid of them because that is the ONE thing we can.