First day of school! First day of school!

Maisie's first day is tomorrow!

She is so excited. Her speech is very limited by her disease but every time I ask she smiles and burbles and I just know she can't wait.

I had a meeting with her teacher, Becky, who is young and energetic and surprisingly knowledgable about neuro diseases. Maisie will need to have a feeding while she's at school tomorrow, so I bought a little bag to hold all of her feeding supplies and brought it to the school to show Becky and her assistant how to use it.

 I also brought in the stander she'll be using at school, this adorable little Leckey Totstander, which we've actually had forever but couldn't use very much because she was too weak.

She'll also have a Mamas & Papas Baby Snug seat (yes, she still fits in a baby seat) and the Mamas & Papas booster seat. These things are literally our best friends at home and hopefully will be just as useful and effective at school. We have at home a very nice (very expensive) Special Tomato supportive stroller-wheelchair thing (below right), but it was a huge monetary investment and I didn't want to buy another one for school, especially if it doesn't work out, so instead we got a very simple wheelchair and added a supportive liner.

I won't pretend I'm not super nervous to be sending Maisie off tomorrow. Recently she has been doing so well. Her medication is giving her so much strength and energy, it's amazing to see her crawling and playing with toys.

Some hours and days are still very hard. Her seizure activity is still very bad and some days she starts shaking and crying every few hours. Seizing is so distressing for her. She doesn't lose consciousness so she is aware that she's lost control of her body, and it terrifies her. All I can do is hold her and rock her and try to convince her that everything is okay. 

Most of her seizures are clonic, which means her whole body jerks, but she also has myoclonic seizures, where just her hand or arm will shake. She usually zones out when this happens, focusing on a point in the distance and dropping whatever toy she's playing with. Her last EEG was in April and the results are just the same as they've ever been. She's on seizure medication, but it doesn't seem to be helping. We're meeting with neurology after school tomorrow. Hopefully we'll get some answers or some help.

So! Hopefully she has a great day tomorrow and we'll get some relief from the neurologist tomorrow!