Loving the smiles

So fun, Hope is showing her teeth again. She pulled out her NG this am and has been smiling ever since. Too cute. The seizures continue for sure but there are brief smiles and little coo's in between.

Nothing new

Nothing new here. Hope is still having seizures that are too numerous to count, still coughing and sputtering with her cold, and occasionally vomitting. Ashley is quiet and content with lovely little smiles when we hold her. Brodie is full of way too much energy, and hopefully expending it at school right now.

Brod & Ash playing

A little snapshot of 'game night' the other day. Alex does a very cute, 'little Ashley' voice as he pretends to get Ashley playing rebound with Brodie. Brodie talks right back to her, 'it's your turn, Ashley', just as if she's really playing. Very fun.

Hope has been crying, seizing or sleeping today. No smiles.

EEG yesterday

Yesterday, Hope was hooked up to the EEG machine for about five hours while I pushed a button every time I saw a seizure (and then I wrote down a description). Which means that the new plan of not paying attention to the seizures, was out the window by 0830. I was pushing that button every three minutes at least.

The purpose of the EEG was to confirm what is and what is not a seizure. The result is that she has A LOT of seizures, and I should just go back to the plan of not paying attention to them, unless she is bothered by them.

She's still very snuffly and coughing a lot. She sounds and looks pretty sick, hopefully this cold will go away soon. She's still drinking from the bottle sometimes, but I'm using the NG (tube in the nose) for meds.

Hope I have some smiles to report soon.

Seizures are the 'norm'

The seizures continue, although Hope is now eating from a bottle more consistently and we see an occasional smile. We met with the doctors and case-coordinators today to make a plan for Hope. Basically, I have to stop thinking that I have any control what-so-ever in regards to the seizures. She's going to have them and I have to stop worrying about what I'm supposed to do about it.

You may think we were already at that point. But when you see her come out of an extremely bad episode and start smiling and cooing again, one can't help but want to do more to keep her with us. Unfortunately, there isn't much to do, so it really is time to let go and let her be as she is. We're still aiming for comfort care, which still means trying to stop the seizures but I can stop charting every second, and stop wondering if we should bring her into hospital or call the doctors again. This should be a relief, but I just feel like I have to resign myself to watching her deteriorate. Not an easy thing to accept.

Happy Thanksgiving

Yeah!!! We got out of the house, to enjoy a family day at the Allen's farm. Hope was crying the entire time she was getting ready, but once she was in the van she settled and enjoyed the ride. She took her first bottle by mouth today and kept it down, so we gave her formula by bottle for the rest of the day. Very exciting. She slept most of the day and then woke up to drink another bottle and have a few brief seizures. Then she blessed us with a lovely little, lopsided smile (still paralyzed on her left side). Even more exciting.

Then we got home and she started crying shortly after. Followed by a few scary looking seizures that resulted in a dose of Midazolam (to stop the seizures). Now she's sleeping, and she looks quite peaceful again. I'ld say it was a pretty good Thanksgiving Day.

Happy Thanksgiving everyone!

Sleeping

This morning she's sleeping, snoring even! The extreme crying lasted till about 8:30pm last evening and after that it was a lower intensity on and off. I really, really, really hope this does not become the norm. Alex and I are wondering if the Midazolam had anything to do with it, because that would be the first time she's had it. But the doctor on-call last night said it shouldn't do that. Who knows, I'm just glad to see her calm and sleeping.