This rain has really been a bummer these last few days. It comes and goes so you can’t really stay out for too long, and after the downpour the humidity makes it gross. The only good thing is that Steve can’t suggest we take a family walk. Physical fitness is not really my thing.

Today I spent a lot of my day reviewing Ella’s IEP and talking to people who have way more knowledge regarding such things than I do. Truth be told, I think I have always spent more time making sure Ella was happy and we knew what was going on at school, that I missed some things I should have been all over. I have been challenged to channel my passion for good not evil, and I always love a good challenge.

Ella’s medical journey has always been frustrating and increasingly stressful because over and over we have gotten no solid answers. She has been poked, she has been sedated, and she has been beyond frustrated during examinations. At first it was easy to justify it all thinking we would get answers. Now each time she has to have something done, I pray it’s the last time. We just got word today that we have to schedule her follow up at home EEG. Just when it felt like things were starting to calm down with her, they pick up again.

Next week she has her follow up hearing test. That almost didn’t happen. The woman calling to schedule the appointment could not understand why Ella wasn’t able to keep a mask on and repeatedly told me she couldn’t have the test without it. I tried to nicely explain the reason she wasn’t going to keep it on, but she literally kept repeating, “so you are saying she will be wearing the mask?” I often wonder how certain people are qualified to do the job they are doing? She eventually said it was okay for Ella not to have it on because there was glass between her and the audiologists.

She also has her final assistive technology evaluation next week. This will determine whether or not we trial an eye gaze machine at home. We were told that once the paperwork has been submitted to Medicaid, it could take months for it to get approved. Last time we took her, she did pretty well. The only issue she had was the amount of time they required her to hold her gaze on a certain spot. It was far too long. Thankfully that can be adjusted. It will be interesting to see how she does this time.

We still need to schedule her MRI, but I am waiting to hear from Boston to see if we can have it done there. She has to be sedated, so if there are any other tests that need to be done under sedation, we would like them all done at the same time. She doesn’t do well coming out of sedation. No matter how many times I try and mentally prepare myself, I always want to ball my eyes out along with her when she wakes up. Truthfully, I have.

After Boston I sincerely hope we have solid answers, and get to take a break from doctors appointments. It was my understanding that they will come up with a plan, if possible, while we are there and then we would follow up as needed. I don’t think I appreciated the tele-visits as they were happening, but I surely do appreciate them now.

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