More and more with Ella it feels like the phrase, hurry up and wait, are words she lives by daily. The truth is, if being a special needs mama has taught me anything, it’s that we sometimes have to fight harder for things that we know are right. Also, there is no down time. There is constantly an appointment to be made, a form to fax, or a mess to clean up.

Once that’s all done, there is usually a wait. Getting in to see pediatric doctors, or waiting on procedural appoints is taking longer and longer. Even before COVID, unless there was an emergency, we waited months to see a variety of different specialists.

We have made little progress with Boston Children’s Hospital these last few days. I am waiting to hear from our liaison to provide me with further instructions, and to go over the itinerary for the week. Another appointment was moved, but it’s scheduled as virtual. Nurse Jane informed me that some departments are still only seeing critical patients. We will wait longer if we have to in order to make sure all of our visits are face to face. We also have to check on the mask policy, and how many parents can be with Ella. I feel like we are so close, yet still so far away.

We heard back from Ella’s neuro today regarding her at home EEG. Apparently because the clinics in the city are open again, they will no longer come here to hook her up. That’s problematic. Ella doesn’t love the car and back to back trips to the city, hooked up to a machine, are going to put her right over the edge. I have asked for alternatives. Her doctor offered an overnight study at Columbia, but last time we were there it was a train wreck. I asked if we could possibly do it locally. Still waiting to hear on that. Another loose end to tie up.

It looks as though Ella’s IEP meeting will be next week. Sometime before that Steve and I have to sit down and take notes on all the points we would like to address. Our advocate has guided us in a great direction, but we all realize getting her out of her current school could take some time. We need to prove that a different school would better meet her educational goals. I have been over and over her IEP and have some serious concerns. Especially if she starts back virtually. I pray she can have some type of classroom instruction in the fall.

This summer we also have to work on getting her new glasses, some more therapy equipment for home, and redoing her communication notebook. The school had been using the one from pre-k, and it is falling apart. I think I am done sharing that masterpiece with her school as well. They seem to be having trouble taking care of personal things we send in. I will make sure we address that at the meeting.

The days are flying by here. Ella’s been hot and cold. Even with the daily pooping, which I am certain is a huge relief for her, she still struggles with some type of discomfort. You can see the pain in her eyes when she cries. I see her asking for help every time, and would give anything to be able to take her pain away. Praying every night for a miracle!

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