Days 308 - 311 Seizures?

Sleeping Beauty

I often wonder if people perhaps think that we have "overplayed" everything with Mikayla. After being given SUCH a poor prognosis, and expecting the worst, we had a dedication service really early, we didn't really plan too much in the future etc etc. Obviously, as time has gone on, and one week turned into one month, and one month turned into ten months, and suddenly our "crisis" isn't so much of a crisis. Don't get me wrong, I am not complaining that sympathy is waning, nor do I actually want to live my life in "crisis mode".... I just think that perhaps, because people don't see all we see, and because this has become our new normal and we're actually okay, perhaps our crisis doesn't seem like it was so much of a crisis to begin with?

And I guess I say this because sometimes I talk about the bad moments, the hard times, like when Mikayla cries for 5 solid hours, but people come over and all they see is a quiet sleeping baby, they must think "ja, right, hardly difficult".... so, as odd as it sounds, I am sometimes really grateful when other people see some of the not so nice things that Miks goes through.... kind of my proof that I don't just make these things up as some kind of sad sympathy-seeker!

Like on Friday afternoon/evening:

You see, the last week or so, Mikayla has been waking up in the night with a scream (well, scream for her, anyway), and has had a horrible complexion, been quite inconsolable, and for no apparent reason. I haven't been sure what it was, having obviously caught it "after the fact". Is it a seizure? Is it something to do with her heart? Is it an apnea? Is is a blocked nose? But on Friday, it happened while she was awake, and while our dear friend who was with us was actually holding Mikayla. Basically, Miks' face went purple/red, as if she was straining, but her whole body went stiff, and kind of limp at the same time.... And she started to cry... more of a whimper, actually. And was inconsolable. It was quite scary though, because unlike the others, this went on for a few minutes, with her going stiff then limp.

The worst part is not knowing what to do. She looks like she is in pain, and quite frightened. Her eyes don't roll back or anything though, so I am not 100% sure if it's a seizure or not. I guess I need to phone the pediatrician on Monday, and perhaps she can clarify. The other thing that's been strange is that she's very very sweaty lately. Given, it has been really hot, but the reason the sweating is strange, is because her body is often quite cool, but her head very sweaty! Maybe a fever? But she isn't presenting with a temperature or anything? Weird!

Other than that, Miks has actually been quite sweet over the weekend. Quite smiley and chatty. She loves being around people (particularly Russ and I), and being held and cuddled. Her eating has been ok... still haven't addressed her nights... but there's just too much going on at the moment.

As for me: this heat is killing me... I am desperate for winter to arrive. I am carrying so much extra weight, I reckon my core body temperature is probably 4-5 degrees higher than anyone else... and when temps are over 30C, that's a LOT!

Funny, we're always quick (me included) to say how UNFAIR life is when things go "wrong", but, as I read last night: "the only FAIR in this life is a carnival".... think about it :)

(I'll add that if you think about it logically: why, just because you're a good person, or do the right thing, or listen to God's commands, do you think that you're exempt from hardships or trials.... would it be fair if only "bad" people had bad things happen to them? None of us are exempt.... and sometimes some people are just "unluckier" than others.... fairness has nothing to do with it)... Anyhoo....

This video was taken last Wednesday... just love the way she anticipates me coming to kiss her... so sweet: