I always love the weekends because as far as dealing with doctors, other medical personnel, and random other people who reach out, things are quiet. It gives my brain two days to rest before the chaos of the week begins.

Today my brain was going full speed. Thankfully I had plenty of people here helping with the kiddos and was able to take care of all that I needed to. Monday’s have become the day that my nieces come by to help their Auntie out. They keep Jack busy and play with CJ. It gives me time to clean, do laundry, and make any necessary phone calls while the boys are occupied.

Amanda has also added Monday’s to her schedule. She arrives at noon and stays until Ella is put to bed. That time has been a godsend, and Ella just loves all the attention. As a bonus today, my friend Jodi stopped by to help out as well. I have known her since I was a little girl playing softball, and we have grown up together. I love her and her family dearly. It was wonderful having her here.

My first Monday bump came from the assistive technology coordinator. It was a good thing we didn’t go down Friday for her appointment. She emailed me this morning telling me that there was no way Ella can come in for her final evaluation without wearing a mask, or shield. I have two options when rescheduling. I can wait until she can wear a mask, or wait until masks are no longer required.

In all fairness, I get the mask requirement. I respect the mask requirement. As of today, Ella is no where near meeting that. The mask lasts for two seconds before she rips it off her face. I won’t even attempt the shield because I am concerned it will affect the results of the eye gaze machine. We already fight that battle with her glasses. I envision her violently pulling at her face the entire session. As far as waiting for the mask requirement to be lifted, I don’t see that happening anytime soon. We are now stuck between a rock and a hard place, as they say. I am looking into alternative masks and will keep working with her, but I don’t have much hope.

Our next bump came from Boston Children’s Hospital. Last week I was getting emails for appointments scheduled in the beginning of August. This week they were changed to the end of August. This is problematic because we have to plan. I need to work on finding a place to stay, and secure childcare for the boys. I spoke with Nurse Jane and she promised to make our case a priority. I have faith she can work it out, and we will have some definite answers soon. She is on top of her game, and has the cutest Minnesota accent.

I also had to have a conversation with BJ’s regarding an order they completely messed up. Paper towels aren’t napkins, and Cascade liquid is not the same as Cascade Pods. The girl insisted I travel back to the store to pick up the right items, but I don’t have that kind of time so am trying to avoid that. I will settle for a credit and get them next time I go. She seemed very insistent they needed the items back. I also had an additional item missing from my order. Not cool BJ’s, not cool.

Finally we got an alert today that the credit card I charge all of my reoccurring payments on, had been compromised. Apparently someone in Massachusetts went on a gas buying spree with Steve’s card today. The guy on the phone asked me how many cars I have? There were at least ten charges. Did he think I was treating my MA friends to all they can fill gas? After chatting, we realized it was only Steve’s card that was compromised, and mine doesn’t need to be replaced after all. I tell you, it’s always something.

It was a busy Monday here. I need to rest up because tomorrow it’s just me and the kiddos. Lots of shenanigans will be taking place, I am sure. I love our days with just the four of us. It gives me lots of quality time with them.

Ohhhhhh, I almost forgot. A member of Ella’s neuro team called today to get additional medical information and updates. They are putting together a care plan for Ella at school, incase she has any seizures when she returns. I didn’t realize this was an official thing but the district requested one, and I thought it was a great idea. I continue to learn as I go.

Be sure to check out my Instagram stories today! I am trying to post as many pictures as I can. I love capturing our day in photos. Follow us if you aren’t already!

https://www.instagram.com/zurlnick_five