Today was not a good day! It was not a good day for Ella! It was not a good day for Jack! It was not a good day for CJ, and because of that, it was nottttttt a good day for me!

We all have bad days, I get it, but when all have bad days at the same time it makes for a miserable day. Ella is struggling. After a weekend on her medicine her episodes have gone away, but she is visibly frustrated. Today she spent a good part of the day screaming and pulling her hair. At one point she screamed for two hours straight. I tried everything to help her and nothing worked. I prayed she would take a nap, but for me she didn’t.

She is also spitting up like CRAZY. I didn’t see that listed as a side effect of the meds but am writing it all down to mention at our follow up with the neurologist. They told us her behavior could change, and should try to ride it out until the medicine gets into her system. How can they expect Ella to live like this for six weeks? The poor thing can’t even tell me what’s wrong with her. It’s heartbreaking. I know I have to give it time but that’s so easy for the doctors to say when they aren’t living it.

Jack has about five teeth coming in so he’s been a joy (not so much). He wanted to be held all day and even then, he was flipping out. The only time he settled down was when he was eating. I may have fed him more snacks than any one person should have, but today I was legit in survival mode. He took a short nap on me (which he never does) this morning and refused to nap the rest of the day.

CJ has been taking advantage of the fact that I need to tend to his siblings and has spent way more time inside on electronics, than outside with his toys. My frustration kicked up a notch today when Jack ruined CJ’s fort and he had a breakdown. I know he has a lot going on in his head and is trying to process all of this, but after two hours of Ella flipping out, I just didn’t have time for that. I asked him if he could maybe play with Jack while I was with Ella, to make things a little easier for me? He told me Jack is annoying and steals his things. He preferred not to play with him. Woooooosaaaaaaa!

Just when I thought I couldn’t take anymore, Steve woke up. Ella was still screaming so he went and laid with her in bed until she calmed down, and eventually fell asleep. When he came back downstairs he took the boys outside to play and I got the down time I so desperately needed. I folded some laundry and took a nice hot shower. Dinner, bath, and bed for the littles followed that. Thankfully, Jack was asleep in minutes.

Ella, on the other hand, struggled to fall asleep. Even with Goldie and Bear and me in bed with her, she cried and screamed. She had the saddest look in her eyes and as tears were pouring out of them, she was pouting. She grabbed for my face and each time I tried to rub her head, she pulled my hands away. She is a girl who knows what she wants, and how to communicate it. Steve talked to my mil who suggested giving her some Tylenol in case she had a headache and we didn’t know. A win for Nani! That is what ultimately calmed her down, and she fell asleep in my arms.

Managing these side effects has been the worse part for us because it’s so incredibly hard to tell what Ella is feeling. We have had five years of reading and knowing her. This is new territory for everyone. We will continue to navigate it one day at a time.

I think tonight I will be ordering myself some noise canceling headphones before I go to bed. One never knows when they might need them.

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