Not this one either...

The latest behavior med Hollis went on made things worse. She has done nothing but beat the living daylights out of her poor PCA and us all week long. Our behavior management tactics have failed miserably: when she hits, she is supposed to go into her "time out" room. Well, Hollis has decided that she likes it in there, and will put herself in the room willingly. Not much of a threat anymore. The best part of this miserable comedy is that her PCA realized the time out room wasn't working, so she made her sit in a corner, just like we did in the old days. Hollis didn't like that much, but when she was done with the corner and told she could get up, she walked over to the time out room and closed the door behind her and stayed in there for awhile. She is such a smart little devil, and knows how to press all of our buttons! Thank goodness school vacation is over and she'll go back on Monday. We'll be on a different behavior med by then, and hopefully she won't be ready to go ten rounds with her teachers.

Groucherella

Hollis has her grouch on, big time. She went off one behavior med, and we started her on another. We waited to see what her "baseline" was off behavior meds entirely: it was scratchy, bitey, hitty and generally nasty. Not too nice to live with that, for one and all. Today we started on a different behavior med, and so far, she is whiney, grouchy, antsy and still scratchy, bitey and hitty. Never a dull moment over here!

Tweaking the meds

We're trying to get the right mix of anti epileptic meds to get seizure control and minimize side effects, which is quite a tricky balance. Hollis has been very tired lately and also has some tremors, both of which can be side effects of some of her meds. She's had a few blood draws over the last few days to check her levels to see what's going on in the whole system. We're fortunate enough to have a great neurologist who goes into great detail about all the interactions, how the drugs break down, flow through the blood, get stored and released in fat, make their way up to the brain etc. I always feel like a med student coming out of one those appointments. Hollis has 3 or 4 doctors who are like this, that give us a full picture of what we're dealing with in their particular area of expertise. I am always grateful that these men and women will take the time to do this, because we have certainly run across others who are anxious to get us out the door. The more we know, the better we can care for her overall needs.

Another one today

Hollis had another seizure today. She seems to be getting a cold, so that could be the cause of it. Going to see her pediatrician tomorrow to see if there's something beyond a cold brewing. She's been pretty out of it all week since the seizure on Monday. I'll be happy to get this week behind me.

A big one

Hollis had a really "big" seizure today, same pattern as the other three, at naptime, around 4PM. What we don't know is if she's having equally awful seizures during the night, because they are pretty quiet. She goes very stiff, eyes roll up and to the left, she turns red, and has very labored breathing. Even with her video monitor that would be pretty tough to catch. It's only because we are right on top of her when she naps (she sleeps in the guest room on the main floor at naptime) that we have witnessed the prior three.

Tears

Saturday Hollis had her first EEG since her surgery. EEG's are akin to torture for her: she has always had sensory issues with her head, and having all those leads attached just makes life hell. Even the marks that the tech writes on her scalp to know where to attach the leads is horrifying for her. This kid could have her blood drawn every hour and be much more content than having to go through EEGs.

It was during the application of the leads that Hollis cried for the first time in months. It made me think how often she used to cry before the surgery. She would have seizures that would result in injury, or would last a very long time, or come in clusters that wouldn't break for over an hour, and many of those times she would cry. She would also cry a lot more in fear, anticipation of something she didn't like, or just because she couldn't express herself any other way. What a gift for her not to have to cry as often anymore!

Riding in style

We went to celebrate Hollis's birthday with Damien's folks this weekend, and for a treat, Damien took Hollis for a quick ride around their neighborhood in Grandma's convertible. It was cold outside, but Hollis loved being in the front seat and even tried to help Daddy shift the car (yikes!). She had such a ball, that when I went to get her out of the car, she signed "more" desperately, and tried to latch her seat belt back on when I took it off. She looked dejected when we put her back in our regular car, a minivan. Is there such a thing as a convertible minivan: if so, I think we might be looking for one!