I am so happy to say that all around, today was a good day. Ella woke up happy, and remained happy for almost the entire day. She did have one meltdown, but she was tired. We all get cranky when we are tired.

I woke up a little anxious because Ella’s program review meeting with the CSE was today. Yesterday, Steve and I spoke with the district in a pre-meeting to discuss exactly what it was that we wanted to address today. Our advocate was present, and as we were going over each point we wanted to discuss, made sure it was clear what we were asking for. She obviously knows the ins and outs of special education better than we do. Although based on many conversations with her, I have come to realize in the last few weeks, things we were told to be true, aren’t. There isn’t always a black and white.

Without going into every specific detail, I will say the meeting went incredibly well. We got everything we asked for, and even some things we didn’t. Everyone was super accommodating, and once Ella is physically back in school, we are hoping to see some positive changes in both programming and communication. I can’t help but wonder if those extra district phone calls I made played a part in that. Tomorrow we have a telephone conference with Ella’s principal to iron out some school related details, and then we should be all set. We originally asked for the program review to find a new location for Ella, but due to COVID, that doesn’t seem likely anytime soon. We totally get that, and are happy with today’s results.

Being involved in this process, to the extent that we were this time, has taught me so much about myself and special education. Other meetings that we have had barely touched the surface of where we went today. I can’t say enough how important it is to ask questions and demand answers. Being your child’s advocate isn’t easy. It will emotionally and physically drain you, but you can’t back down.

Today was a huge victory for Ella, and I am patting us on the back for this one. We fought hard, and at times it wasn’t pretty. I can’t forget to thank all the friends and family who guided us in the right direction. Again, don’t be afraid to ask for help. We couldn’t have gotten Ella what we did without them. Knowledge is power and today I felt like the Hulk!

After the meeting was over I received an email from Ella’s neurologist. We have been discussing all week the best place for Ella to have her follow up EEG. Originally it had to be Columbia, and they wanted us down there to have her hooked up and unhooked. I didn’t think Ella would respond well to back to back trips to the city, and the waiting that would be involved. We were then offered an overnight EEG at Columbia. We would be sharing a room and staying in the city. I didn’t love that idea either. Our final option was to head to a satellite office in Tarrytown.

It appeared as though that was the winner, until the email today. Ella’s amazing neuro figured out a way to schedule a team to come to the house to hook Ella up and 48 hours later, come back and unhook her. I have to wait for the scheduler to reach out but hopefully it will be soon. I am curious to see the affects the medicine is having, and now instead of a 24 hour reading, we will get 48.

When you find a doctor that really understands your child’s struggles, you don’t let them go. Dr. Bain is responsive, through, and never makes us feel like we are overthinking anything. She entertains every question, and never takes more than a day to personally get back to us. When Ella was in the hospital she would call or text us every night to see how everyone was doing. She’s fabulous!

After a few not so great days with Ella, and being in limbo with school and follow up medical appointments, today turned out to be a day filled with great news.

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