Day 21

One set of 12 spasms today. We move forward with the injections.

I explained to Andy's OT how he has been dribbling formula from the right side of his mouth every feeding and I realize he needs help with it. She told I could go to our service coordinator and request a speech therapist; or, I could go buy an electric tooth brush and she can help me. So I bought an electric tooth brush. She has been fantastic with Andy and I know she can help me with this. Andy's tooth also fully cut the skin this morning so it was time for a tooth brush anyway.

The nurse called from the neurologist office. I explained to her that there was no spasms yesterday, more today, so I supposed we were going to do the injections. She explained to me that she was pending approval from the insurance company but informed them I needed the medication delivered tomorrow. They should call me before arriving to make sure I'm home. She wants me to bring the medicine to his appointment on Wednesday, so after I'm trained I can give the first shot in front of them. No pressure or anything. She then asked if we had a nurse visiting and I told her "No, but I want one!" She is starting the process of contacting the right organization in my area to get started with a nurse coming by to help with the injections and/or monitor Andy. It is a huge relief and burden lifted.

I realize it will still be me doing the injections. That extra help to make sure it's going right is priceless. I'm not going to be leaving the house anyway. He has to have the injections for a minimum of 4 weeks. If the spasms stop, and an EEG comes back normal, then we can wean the medication off. If it takes longer, he will be on it longer. I think there a regular medicine he's given after them. If they start back up, we repeat the injections. We can do this.

I made skinny strawberry chocolate chip muffins for our last outing tomorrow. I hope all of our friends know they are very welcome to visit, as long as they have not been sick in the last two weeks and wash their hands. :)