Like the title states, this has been a very difficult weekend and past week for Ezri. Thursday morning she woke up with a cold and even though we could tell she was pretty sick with it, we took her along to school that day and Friday – though we didn’t go to Physical Therapy Thursday afternoon or soccer Friday (the girls have started on a preschool age soccer team and we’ve been to one practice; Kes loves it, but Ezri’s not too keen on all the running). By the time Saturday rolled around Ezri’s voice was very hoarse, a symptom she’s never gotten from a cold, and she was absolutely miserable. We stayed home all weekend so the girls could rest and it seemed like Ezri cried just about all weekend as well. As hard as it was for her, it was hard on us too as so much of it was so completely irrational and there was absolutely nothing we could do to make it better. There were brief ‘blips’ of happiness, but the majority was pretty extreme unhappiness and while we know that feeling the malaise from the cold didn’t help anything, much of the crying can be attributed to the increased seizure activity from the stressor of the cold on her body. It’s pretty obvious, at least to us, when there’s significant prolonged crying over absolutely nothing and then it just suddenly stops, the mood changes 180 degrees (back to normal demeanor), and then resumes just as suddenly.
I also noticed when going through Ezri’s lunch last week that some of the items like string cheese came back unopened and one day the straw in her water bottle had been dislodged meaning she couldn’t get her water to drink (none of it had been drunk). This was really concerning, knowing she was sick and even more needed the nutrients and hydration so I emailed the teacher asking if she could keep an extra eye out for Ezri at lunch time. She said of course and that the lunch had been a little rushed one day, she wasn’t able to check everyone like she usually does and could I reinforce Ezri asking her for help when she needs it because Ezri had not asked her. I have to say, the first thing I asked Ezri when seeing the unopened food returned, was if she had asked her teacher for help. Ezri’s response was ‘yes, but she wouldn’t help me.’ Well I knew that couldn’t be the case. If she had asked her teacher for help, her teacher would have helped her. What I am fairly certain is going on, and this is because Ezri has complained a couple of times lately about the lunch room being too noisy (a seizure trigger for her), is that she’s getting into a ‘spacey’ state of seizure activity, so subtle the teachers are not able to see it, but rendering her unable to ask for help when she needs it. It reminds me of the speech therapist when she was 2-1/2 saying to put her toys up high so she’ll have to use her words to ask for them – her brain is just not able to perform that function no matter how much she wants to (thankfully in the lunchroom its transient and she can normally ask for help as needed and I think she may even *think* she’s asking for help, but the words aren’t coming out). It’s like asking a person in a wheel chair to get up and go run – its just not possible. HH is so difficult for people to understand. I think I’m going to try and observe one of her lunches in the near future just to see how she’s faring and if I do see some seizure activity that’s restricting her but the teachers are not seeing it, then maybe pointing it out will help alert them to subtle seizure activity and they will know to watch a bit more. I don’t know what else to do and we’re not at the point of wanting her to eat separately, in a quieter setting, yet.