How do you explain the unusual?

We learned last night that Elise now has Influenza B. That is less than 6 weeks after learning she had Influenza A! It would be a huge understatement to say she has had a pretty rough couple of months. Unfortunately, that is how it goes in Elise's life. She will go months with relatively few issues and then the bottom will fall out. Even though she is struggling the past couple of months, we are well aware this is a long way from the bottom truly falling out. We have been there as well. We aren't even in sight of the bottom at this point, and we would like to keep it that way.

When Elise was finally finished with chemo treatments and we were able to go home, we had no idea the health struggles that would still emerge in her life. As cancer developed in the very early stages it was very easy to see that something wasn't right and she was spirally down hill fast. Post treatment Elise, just isn't that easy to figure out. She has lost the ability to verbally communicate with us. She can't say this hurts, or this is wrong, or I don't like this, or anything else that might help us to help her. She has also lost the ability to cry. Most days, we are very thankful for that. Some days, we just wish she would cry when something bothers her so that it would be easier to understand.

When I was sitting with her at the doctor last night I struggled for the right way to explain, "She is sick. I just know it." Frequently they ask things like, has she been vomiting? Running a fever? Pulling at her ears? Going to the bathroom regularly? Etc., Etc. Etc. How do you explain to them that she throws up every day, sometimes multiple times per day? She generally doesn't run a fever, but she does have bouts of extremely low temperatures. She is always digging at her ears, nose, groin, rear, etc. How am I a supposed to know if she did that 300 times today instead of the usual 275? During treatment, she lost the ability to use the bathroom on her own and subsequently wears a diaper. This will likely be a way of life for her and for us the rest of her life. She does have some "usual" bathroom behavior, but a rapid change in wind direction could throw that off for a few days as well.

 

So, I gave them the only information I could think of that always tells us that something is not right. She isn't having seizures. That's it. She doesn't have all the other textbook symptoms that the doctor is looking for. She isn't having seizures, so something must be wrong. How do you explain, her brain is working better the past couple of days, so something must be wrong? The look on the doctors face when I say that, is always one of the highlights of the visit. It's the little things when you have a child with special needs. It makes me smile at least.

More importantly, we always ask ourselves, why does something else have to be wrong to finally give her a break from the seizures? Dozens of high powered drugs have been unable to stop them. A special diet did nothing for them either. But some random illness seems to stop them almost instantly. On Thursday, Elise had her usual 150+ seizures. On Friday and Saturday, she didn't even have 50 total both days together. For many that would be cause to celebrate! For me, my inner skeptic begins to act up and I know something must not be right. We wish we could enjoy a few days without seizures, but the reality is those days are usually accompanied with other challenges.

The picture above is Elise sleeping on the couch this afternoon. She didn't get out of bed until 3pm today. I am jealous! She was awake less than 30 minutes before she got up on the couch and was out again. A lot of sleeping today. Tonight we know she will be just fine. We will enjoy the lack of seizures while they are here, and will take the other sickness that has come to take their place. It is a matter of time until the sickness is gone, and life will be back to "normal". Hopefully that will come sooner than later.