Status quo is sometimes a good thing

Tuesday, January 18, 2011 3:03 PM, EST

 

Things remain pretty status quo for us. The ups and the downs – still having them all. Becca is having good days and bad days. Her seizures continue to baffle us. Some days it seems like the diet is really helping – other days not at all. And it isn’t like Becca can get into forbidden foods on her own (or even that her ketones reflect any kind of change that would explain the changes in her seizure activity).

Right about the time the Winter intercession was supposed to end we got an ice storm here that caused school to be canceled a few more days (one of the days was an early release in anticipation of the event). The day the event was supposed to start we kept her home, in part because of being 30 minutes away from the school, and in part because she had a significant seizure that morning. The next two days were snow days. Finally last week she went to school TWO days. Don’t you know in those

two days she must have caught something. Sure enough this past Monday (a holiday for Martin Luther King Jr day) she started in with a cold and fever. No school today. Oddly enough – by the grace of God – her seizure activity has decreased. Developmentally she also continues to do really well. Lots of babbling and attempts at speech. She has used crayon to make mark on paper. We’ve also gotten her to correctly choose color (as in “show me the red one” when presented with two colors) Now granted – she’ll quickly tired of games such as this. The first time we saw her doing this it was too funny,

her Speech therapist had the picture card showing the green square. I was holding the green square and another shape. The therapist asked Rebecca to show us the green Square. Rebecca kept grabbing the card the therapist had – and NOT the one I had in my hand. Finally the therapist and I were

laughing too hard “yes Rebecca that is a Green Square” (smarty pants!). She hid her card, asked her again and Becca took the one from my hand. Each time we asked her a question for color/shape we had to hide the card after asking her, or else Rebecca would try to show us the card instead of the object. But she got 5 out of 5 correct! For those curious we were using shape sorter blocks.

We’re working on teaching Rebecca to use the GoTalk 9 – an Augmentative Communication Device, so she can select a picture communication symbol to represent what she wants to say. Myself (or someone else) will have recorded something to go along with that symbol. So – for instance she can press a picture for a cup and it will say “I want a drink”. We meet with the Neuro on Thursday, as well as the Ketogenic Dietitian. We may look at adding a new drug. Please keep us in your prayers that things would stabilize. As many of you know the weeks around Christmas and New Years were rough around here. This cold is just more frustration we don’t need (including the health issues both David and I have).

 

Thursday, February 24, 2011 9:48 AM, EST

 

Not to much has changed.

The diet is still helping. Ironically enough because she is at a fairly decent place her doctor is decreasing her lamictal. Praise God our first drop of the medication went smooth as could be. We have another drop coming up in a couple weeks. This is a SLOW wean. Another plus is that the couple times I’ve goofed and forgotten to give her meds – like this past Monday morning – it did not make her seizures go crazy. There was a mild increase – but nothing like we used to see. An average day is showing us around 2 events a day. There may be other really mild ones we don’t notice – but they are THAT mild. Even then she usually has her one typical event in the AM, an then maybe a cluster of  head drops later. This doesn’t mean she isn’t having something like absence seizures, or other ones we just don’t see. But honestly – if her seizure is mild enough to not affect her at all, we can live with those. Her speech therapist and I have decided to get Rebecca a communication device. It will likely be the Quick Talker. We’ve tried using the Picture symbols in various places, but for Rebecca to know to get one, and carry it TO someone is just too much for her. We need that auditory help so she can have a better way to let us know what she wants

. Had a fabulous time last weekend going to a support group meeting for families with kids with Lennox-Gastaut. We met in Winston Salem. It was fabulous to see some old friends again, and meet a new one. Granted most of us already keep up with one another on Facebook, but it is wonderful to see each other in person. knowing you are in a room with other families with kids just like yours. That your kid’s strange behaviors, or cognitive deficit is no different than the others. You get to feel normal! Becca continues to have health ups and downs too. Catching a stomach bug (which she shared with David and I) and then strep throat. Poor little bug!

 

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