We Call it Dinner

We are gathered around a nicely set table with perfectly placed settings for 4 people, candles in the middle, glasses full of milk and water for drinks, and ready to enjoy a peaceful meal together. This is something I saw on TV recently. This isn't how it is at my house! In reality we have all of our stuff pushed as far as possible to one end of the table, we have used place mats in years, drinks better never get near the reach of Elise, and there is very little "peace" at dinner. I wouldn't say we like it that way, but we have gotten used to it.

Elise doesn't each much by mouth and instead relies 100% on nutrition from a food pump and tube. We like to say, "She eats for sport." On a great day, she might eat 4 pretzels at a meal. Most days, she eats nothing.

Most days at dinner, life looks something like this.

One of the effects of cancer treatment is that Elise lost her sense of self control for things that are dangerous and messy. It is HILARIOUS to her if you leave your drink within her grasp. Within 2 seconds it will be dumped on the table or dumped on the floor. The same for your food. Sometimes she will just stick her hand in it and use it as mouse for her hair or as an accessory to her outfit. We are well versed at this in our family. It has even been months since our 4 year old Abby has fallen pray to Elise's long arms. She has learned how to defend her territory.

Once we have "secured the perimeter" and are settled in to eat, then a new problem arises. Seizures. Elise has Myoclonic and Drop Seizures. Myoclonic seizures generally last 2-3 seconds only. If you have ever been asleep and woke yourself up with a quick "jerk" or "twitch" those are generally termed Myoclonic Jerks. They are a close cousin to the Myoclonic seizure. Drop seizures generally last 1-2 seconds and just how they sound. Elise will go from a full standing or sitting position to on the ground in that 1-2 second time span. The seizure is generally over before she hits the ground. At meal times in particular, Elise has clusters of those seizures (generally 75-100 of them). With those generally comes our daily visitor, puke! For some reason, seizures make Elise yak. I would venture to guess that nobody reading this is comfortable eating dinner with one hand and holding a puke bucket for your child? We have all mastered that ability. Abby even asked for seconds as this was taking place tonight. Once Elise is finished, she frequently will fall asleep at the table. That is what you see in the picture above. She isn't much company, but it finally becomes peaceful.

One of the strangest phenomenons for me, is that Elise can generally "turn this off" when we are with other people. Maybe it is because we aren't as entertaining. Very rarely to people we spend time with get to experience a full blown Elise puke fest and a huge cluster of seizures. She saves that for those that love her most! Any times Elise is sitting still for a prolonged period of time, there is likely to be a seizure cluster and an appearance by the puke bucket. It makes car rides, plane rides, and meals lots of fun for everyone!

If we ever come to visit your house for a meal, feel free to hold the pretty place settings, good China, and glasses nicely placed on the table. They will likely just end up pushed to one end of the table and replaced by a bucket anyways. So, who's ready to host the Ballard's?????