I almost have to laugh at how many times I start to feel “normal” and things get calm and easy and comfortable- and then Harper shakes it all up again. We had another one of those weeks this week. We made it just over a month with no seizure activity of any kind, no fevers or illnesses of any kind, and consistently getting her to take all of her medications every day. It was a dream, and it was lovely, and I got a little too comfortable with the normalcy. We were able to go out and do things, be a part of the real world again, and we even started her back in her Sunday school class with other children, let her sleep in her own bed again (but still in our room of course!), and did a little traveling (although not too far away!).
This week the germs hit. She developed a cold, which quickly progressed into croup and a couple of scary nights of breathing issues. Sleeping and eating have been issues all week again, and we are back to not being able to get all of her meds in her system on a regular basis. And when you put sickness, sleep disturbances, not eating/drinking as much, and not taking medications all together, seizure activity is expected. In fact, we start seeing all the little signs that we are starting to recognize that tell us “a big one is brewing” (in the words of her neurologist). Fortunately it hasn’t happened yet, so we are thankful for that!
We have seen both the pediatrician here in town and the neurologist at Duke this week. She had a steroid treatment for the inflammation in her windpipe, and a chest x-ray due to the wheezing in her lungs- we haven’t gotten the results from that yet, but assuming no news is good news! I was warned about this time of year and the outdoors with her- we’re already cautious with the temperatures since one of her medications prevents her from sweating so she overheats super easy, but apparently she also has some issues with bug bites. They tend to swell and get infected easily and she had a couple of spots they were checking out, so we have to be extra vigilant with protecting her skin from that as well.
The neurologist visit went well at Duke- as usual she checked out just fine with everything. I spoke with him some about the long list of diagnoses on her chart to see if he could clarify some of those big words for me… Basically, at this point, Harper is considered to be epileptic simply because she has had so many seizures. In her case, she doesn’t have seizures because she has epilepsy- she has seizures because she has brain cysts and hydrocephalus and areas of brain trauma, so she has epilepsy because she has seizures. In addition, she has a tendency to have what they call “status epilepticus,” which means a seizure lasting longer than fifteen minutes. She has had a few of these, and they are life threatening, so her seizures have to be treated with urgency because she has shown that once she gets started it can be very difficult to stop.
As of right now, the combination of medications Harper is on seems to be working well, so we are staying with it. However, we did discuss two small changes. First, he prescribed another medication for us to use on an as-needed basis. This one we can use for a few days when Harper is sick or when we see those signs of a big seizure coming to help prevent major issues since illnesses so much lower her threshold for fighting them off. The second change was the best news of the whole trip- he said that he would send our “sprinkle” medicine to a compounding pharmacy! We were so excited about this- Harper does great with liquid medications, but this one sprinkle tablet has been a constant source of stress in our home for months now. However, once we got back home, we learned that our insurance will not cover the compounding. We have decided to pay for one month out of pocket to see how well she takes it, and then take it from there.
So, an eventful week… We stretched our limits a little too much as she did so well and learned that we have to back way off again. She just seems to catch germs so easily, and then when she catches them she gets pretty sick pretty fast and holds on to it for a while. It can be so deceiving- she is so wild and happy and full of life and you’d never guess that she has any special needs of any kind when you see her, and even we tend to forget when she does so well for so long. But behind the scenes there are these little things that we have to remember to pay attention to- keeping her cool and hydrated, protecting her from simple things like bug bites, making sure she gets enough rest and sleep, not letting her get overstimulated, pumping all those meds, watching germ exposure, and of course always watching out for that head of hers!
We’re always learning there’s never a dull moment around here, and this week has been a big reminder to me of the importance of always praying that hedge of protection around my children. Because no matter how hard I work to keep them safe, I can’t protect them from everything. I can’t be everywhere, I can’t ward off all the bad things, and try as I might, I just can’t be Superwoman. But, they have a heavenly Father who can protect them from everything, who is everywhere, who has defeated the bad things, and who is greater than Superman… So the best thing I can do is place them in His hands.