My mind is racing with a million updates for you but I will try and break them up, as I do not want to be writing a novel and lose you halfway through.

This last thirty days has been filled with new beginnings. We said goodbye to my childhood home after forty years of it being my “safe” place, and moved mom in. She has an amazing private space to call her own and instant access to the chaos that we call our life. CJ has loved visiting and hanging out with grandma and makes sure he sees her multiple times a day to check in.

After much back and forth with our nursing agency, we have added to our already amazing team of nurses. We now have a very capable night nurse, filling three of the six nights we were missing for Ella. I wish I could say obtaining nursing and dealing with an agency has been a walk in the park, but truthfully it has been one of my biggest stressors. False information is often shared and last minute changes seem to be frequent. I could seriously write a book about our five month nursing saga that would quickly become a Lifetime movie. I can’t make this shit up. Fingers crossed it’s smooth sailing from here on out, or at least a long enough span of time for me to get a break.

February also brought me new employment. No joke, every single person who I already told has asked when I will find the time? It’s mainly a work from home position with once weekly stops at the office. I really like the women I work with and enjoy what I am doing. It’s time for my brain to focus on something else. I have found the time and am learning as I go. I was ready to do something for me. This is the first step.

The rest of the Zurlnick five are hanging in there. There was a case of COVID (only one) in the house which led to isolations and quarantines longer than anyone wanted. It came just a week after we got the puppy (you heard that right) so that was super fun. We did our best to take turns with Teddy, as he and Gibbs were not quite besties at that point. Otherwise, CJ is killing it at school and Jack is testing every last bit of my patience. #toddlerlife

Ella is as sweet and loving as ever. We attempted the Keto diet with her these last two months in hopes to use it as a way to further minimize seizure activity. While she started off great we had to pull back a bit and make some modifications because her little tummy could not handle it. Studies have shown that this diet decreases, if not eliminates, seizures if followed correctly. We obviously are super excited about this possibility but want to make sure it’s not at the expense of something else. We are followed by a dietitian and she’s been an amazing resource. We will get there. Like most things with Ella this will require time and patience.

More exciting news. Ella has also started a Tobi trial at school. For those who don’t know, the Tobi is an eye gaze communication device. Ella looks at an icon and is able to express what she is wanting/thinking. Initial feedback is that she has been doing well. We should have a full report soon. If they think this is something she will benefit from, our home district will purchase the device and it will become her primary source of communication at home and at school. I will definitely keep everyone posted on that.

Each day here is a brand new adventure. Today Jack spilled glitter all over my kitchen floor and ate CJ’s dinner off the counter, Teddy managed to track his own poo all over the kitchen from outside, and I somehow befriended an older man at the dollar store who was looking for unsold newspapers to burn in his fireplace to keep warm.

I can’t make half of what happens in our lives up and never know what tomorrow will bring. Keep following to see what happens next.

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