Today we heard Clara's new seizure med will be delivered tomorrow. Joy! It has been two weeks since our last Neuro appointment when we chose this medicine, and for whatever the ridiculous delay it will be started tomorrow. It has been so hard to watch her continue to go through the spasms. I have felt so hopeless. I pray this can help, and we can avoid steroids, or ACTH injections. 

With no spasms, we hope to see more development. Going through these and recovering each day doesn't allow her to learn anything new. Although her mood as been up lately, more smiles and personality she is still basically a four month old. 

Below are just some super cute photos. Clara just got her lady bug adaptive chair. It allows her to sit up, with less support, so she can try more on her own. The allows for play time. Getting her in it takes two of us. She really doesn't like it very much, but we try, try, try it anyway. It is so stinking cute! 

OT time with Tracey. 

I did it! This is Clara's adaptive oral massager/spoon. In this picture she actually put it in her mouth with  her baby ceral. Feeding continues to be a struggle, she allows it but quickly is over it. Clara receives feeding therapy twice a week. Her nurses usually work with her most days once, and we try at night during our dinner time. I just know never know how  long she will do it, or if she will even allow me near her mouth.  I try to make it fun, with lots of sounds, songs, and warm water in between bites.