My purple ribbon

This week is Infantile Spasms Awareness Week. The 30th of September was Microcephaly Awareness Day. November is Epilepsy Awareness Month. Can't you just hear them now: how come I have to share a birthday and Mya gets a whole quarter.

This website has a good summary of what IS is and what makes it different and more devastating than other forms of epilepsy. http://www.infantilespasmsinfo.org/About-Infantile-Spasms.php If you have never seen Mya have a seizure, they look very similar to those in the video. What you are seeing is multiple seizures in a cluster of seizures. Lately Mya has been staying in her seizures a bit longer than this child but having fewer seizures in each cluster. She has an average of 4 of these clusters in a day with between 1 and 7 seizures in each cluster. She has not had a seizure-free day since her diagnosis a year ago. 

IS is rare. It is ruthless. It does not care who it hurts. It takes typical kids and gives them a future that is anything but typical. It adds another layer of challenges to those who already have so many. It laughs at medications with unthinkable side effects and rejoices when it takes a life. It strikes our babies. It changes our families. It has no cure. Seizures suck.

Another use for vinegar and baking soda

We go through a lot of the stuff in this house.

This morning I thought, huh, the bathtub could use a cleaning. I must be psychic. Thank you Ella for turning that errant thought into action. I did have another premonition that I ignored pre-bathtime: I don't think either of these kids have pooped today. Listen to your instincts! I think it is a motherly right of passage to scoop poop out of the tub. Passed. I am not sure why floating poop is more disgusting than squashed diaper poop. But it is. Much more disgusting. God did smile on me for a minute when he instructed Ella to wait until Clayton was removed from the tub. So I only had one to re-soap and rinse after a near miss. NOPE! don't touch that.

Hungry?

next week, I promise

There are 2 kinds of people in this world: the snoozers, and the shoot out of bed at the first chirp'rs. I am a snoozer. Most of the time (lately) if I am the first alarm I don't snooze out of respect (I have too been getting up Bernie!). But on my 'this cannot be called a day off because these children are more work than work' days, snooze I will. Oddly enough, I also consider myself a morning person. There is something about being an hour into your day when the sun is just peaking out and the air is super crisp. I just prefer to wake up slowly when given the chance. So mostly, if given the chance, that means I don't get to see much of the world before the sun is up. Sorry early-morning loving self. What can you do? Oh right, just get up.

You know what else I love? That feeling you get about 3 miles into a good run, about half a mile after you thought your lungs were going to burst, about the time you feel like you could have another 5 miles in you. You know the last time I ran more than a mile? 2008. Why? Because before you get to that spot where 4 miles is easy after being lazy (or pregnant or the mother of triplets) for a few years, you have to be that guy. You know the one that looks like he is about to keel over and is barely keeping up with the walkers. The one you drive by and say, yeah he should just walk. I hate being that guy. I want to be at mile 3 and breathing easy. before the sun is up. because I had time to do all this. because I didn't snooze. You might call it lazy. I call it understanding what I like and prioritizing.

But on day 7 of my 7 days without a sitter week, I discovered why my back has been bothering me. These kids are getting heavy! The post-naptime scoop and repeat and repeat ----> culprit. So my goal for next week (I will too do it next week Bernie!): re-prioritize what I like.

That's Mya's

We have these 2 magic words in our house: that's Mya's. To which Ella and Clayton stop and replace whatever it is they just got their hands on. The other day I was prepping snacks to take to neurology and look over to find Clayton mid-stride 4 foot into the 5 feet of tubing that is Mya's feeding pump with a giant grin on his face. Look what I found. The other end is attached to her belly. STOP. That's Mya's. Normally he wouldn't touch her tube, we have already established that its Mya's, but I had just set it up in the cute little travel backpack to take it with us in the car. It was a little too tempting. At least we would have been prepped and ready and already heading to the hospital anyway. But let's not. It is kind of interesting what they do not respond to, or at least what elicits a complaint: no, please put that down, that is not yours, for the love of God stop screaming. But with 'that's Mya's' apparently they know we mean business. I wonder if that means we are softies in all other areas of discipline.

I think it is fantastic how wonderful they are with their sister. Maybe sometimes we take advantage of that bond. One possible distraction to the pre-dinner fuss is: hey Clayton, have you given Mya a kiss today? Whatever the answer, off he goes. It buys you at least 3 seconds of silence. They fight over her chairs when she is not in them but will exit without complaint when we go to put her back. They push her in the stroller outside and bring her toys when she fusses. They rough house with each other but with Mya they are different. They are gentle and compassionate and a little in love. The feeling, I believe, is mutual. She loves to watch them, she responds to their touch, she has been known to laugh when they cause a ruckus. One of the things we struggle with is giving her the appropriate amount of entertainment. Most toys are too busy and not easily activated or propped within reach. TV in general is a lot to take in, as are most activities we would do outside the house. What she really needs is someone to sit down with her and help her explore and interact with a toy. And as we know that is not always possible. Luckily for her, we have 2 built in sources of entertainment. And entertain they do.

A Cheerio

It was neurology day. What is more exciting than neurology day? Family neurology day. I knew it was coming, and I tried to prepare myself. There really is no preparing yourself. We had the double stroller blocking the crazies into the back half of the room. This is the half that houses the toddler toys on the wall that you kid yourself into believing only harbor 25 different varieties of illness and not the half that houses the bio-hazard receptacle. If you recall, we learned last family neurology day that they love the bio-hazard receptacle. They munched on grapes, carrot muffins and 2 snack traps worth of Cheerios. Then they proceeded to scatter all of this around the room. Sorry about the muffins folks. I felt the need to explain to the first round of doctors/students that stopped in that our nanny is in Costa Rico. I do not do this to myself on purpose. By the time the neurologist made his visit it was beyond explanation.

About halfway into the appointment with Clayton screaming, Ella squealing about the sucker she was just handed, and the Neurologist trying to act amused and not annoyed it struck me: we have kind of a lot going on. I mean look around, yes that, but now we also have a child that sleeps a lot but really needs medication that will make her sleep more. She also needs another surgery and could benefit from a third but we aren't so excited of the prospect of putting her under again. So we discussed some band-aids to the problems, Clayton, to the horror of the doctor, ate an escaped Cheerio off the floor, and the therapist explained the virtues of getting into a routine whereby Mya will wear her AFOs daily. Productive. After we made it home, managed our way up the stairs, and I dropped Clayton into a sheetless crib (he removed it last night and handed it to his sister) I sat down on the couch next to Mya: my dear, that was fun. I am so glad we get to do it all again tomorrow. Tomorrow is family GI day. Woot Woot.

Holy hairdryers

I was drying my hair with cold air all week which, I learned, is not the most efficient method. So I found myself in the hairdryer aisle at Target. Yes, the hairdryers require an entire aisle. There are at least 20 different varieties but they all have the same 3 options. They are all within $12 of each other. What is wrong with us that we need so many options? They condensed the rest of the store to make room for groceries but somehow the hairdryers held their own. They need room to breathe I guess. It reminded me of my first trip to the sippy cup aisle. Talk about bringing a new mother to tears. Here is a tip I wish I knew from the get-go: buy the cheap plastic take and toss variety. You can even switch out the lids for straws. If they roll under the couch half-full of milk and emerge 3 weeks later half-full of something that is not milk you can institute the toss option. They are cups people. Why so many choices?

This weekend marks the 1 year anniversary of the start of Mya's seizures. Or at least the 1 year anniversary us us recognizing them as seizures. In a lot of ways it feels like we are no further into treating them than when she was first admitted. I remember the attending on the neurology floor telling us that in kids like Mya the onset of seizures typically corresponds with a plateau in development. It was a concept I couldn't quite wrap my head around. She was 7 months old. He also told us they were very hard to treat. I get it now.

I think we are far enough out from her surgery to start making some more decisions on medications so we owe the epileptologist a follow-up call. The seizures are unchanged. The sleeping is still obviously off even with full hydration. She does sleep at night and takes a 3 to 5 hour nap during the day so it is no longer that she is sleeping all the time. But, it is still impossible to wake her from a nap or know when the nap is coming which makes for interesting therapy sessions. She slept through 2 of 3 this week. While I do enjoy the company of our therapists, I think their time might be better served treating out daughter.

I am not very excited about our options (or lack of) in medications. Maybe the brilliant epilepsy minds should hook up with the brilliant hairdryer minds and give us a few more choices that don't suck.

You are going to potty train next summer, right?

Our pediatrician is awesome. She is also very random. Somehow we jump from examining the nutritional value of the Gerber Puffs samples she is thrusting on the crazies who are overrunning the otherwise empty office to... the potty training timeline. Next summer we will be doing that? Wow. I guess maybe we will. How did that happen?

Somewhere in the last few months we have morphed from cuddly babies into babbling little people who occasional follow instructions. Why did we want them to talk again? I get it, Clayton. There is a car outside. Give it up. Go give Mya a kiss. And put your dirty clothes in the hamper while you are at it. Yep, we have slaves. Two of them. One to put the dirty clothes away, and another to put the clean clothes away. In the same hamper. Not helpful buddy, I was about to put those PJs on your sister. Bring them back. No the clean ones. Not the shoes, the PJs. You're right that is a button. And that is a book. About those PJs. Right...potty training. Maybe when they are 5.