These last few months have been insane here at the Zurlnick house. Over the last ninety days Ella has been medivaced twice, visited three different hospitals, and has spent just about twenty one days admitted as an in patient. It’s crazy to think that instead of beach vacations and family time our summer has been spent getting Ella on track, sleeping in hospital rooms, and finding childcare for the boys. It was certainly a summer to remember.

Despite all the chaos and unplanned visits there have been huge victories, and I can only call them the silver lining. For months Steve and I have been fighting to get Ella in school and at home nursing. We were seeing the seizures increase and had legitimate cause for concern. Watching Ella go through what she did, trying all the in home interventions we could, and not being able to help her was heartbreaking.

We visited Ella’s new school not long after her time in the PICU and explained our concerns to the principal. She was more than responsive and agreed that based on Ella being a brand new student and still unknown response to the new meds, a private nurse at school would be best for her and the staff. Two days later we met with the district and with the principals recommendation and the fact that things escalated so quickly with her seizures only a week before, we were given a one-on-one nurse to be with Ella at all times. This nurse will replace her aide.

We continued our fight for in home nursing as well. I asked her doctor to write another note to the insurance company. She had already been denied three times so it needed to be good. Three drafts later it was submitted and the insurance company granted Ella sixteen hours of in home nursing. On school days that means she is covered the entire day. We are still working on trying to get twenty four hour nursing for non- school days and weekends.

We have already had the pleasure of meeting both of the nurses who will be attending school with Ella and they have been able to spend some time caring for her at home. Laura is the absolute sweetest. Ella took to her right away. She is on top of everything and Ella just adores the time they spend together. Fitting into the routine has been seamless and we already feel so comfortable with her.

Her other in school nurse, Kevin, was here the day Ella was medivaced to Hackensack and treated her with such care. He hasn’t been back to spend time with her yet due to scheduling but he should get a few more days with her before school starts. I have no doubt in my mind she will be well taken care of.

My anxiety is still high, as time away from Ella is something that I don’t deal well with. I know she can’t stay with me forever but every second I am without her I am wondering if she is happy and okay. I don’t doubt she will be but there is just something about the unknown that gets me every time. I am putting my faith in the universe and hoping that Ella thrives with her new nurses and at her new school.

Steve and I have been fighting so hard to get Ella the care that she needs and finally getting it has been bittersweet. We never thought we would be in this position and figuring it all out has been quite the lifestyle change. Not only does Ella have to adjust but the entire family does as well. Our door has become a revolving one. We are so blessed that everyone has been so great about it, including the boys. They just roll with the punches and love having visitors.

In other news, we were told at Hackensack that Ella now qualifies for Make-a-wish. The social worker explained the criteria to us and said she has many children with seizure disorders who have been granted wishes. We are grateful for this incredibly opportunity but when she told me, my first reaction was sadness. They don’t just give wishes away. Ella had to be critical enough to get one. We are waiting to hear from the New York chapter to get more specifics and ideas of some things we might be able to get.

The next two weeks are going to be emotionally draining on this mama! One thing is for sure…there is never a dull moment here.

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