This is not a barn... and other important discoveries

When my alarm went off at 10 till 6 I had about 3 minutes to contemplate whether I was going to do an ab workout this morning of just truly call it a rest day. For those 3 minutes I allowed myself to believe that I was in control of my day. Then I heard Clayton crying that his tummy hurt and the decision was made. It turns out he had a point and that his bed was covered in puke so we got the day started a bit earlier than usual. I will admit that the morning goes much more smoothly when the crazies are up at 6 instead of 7 and way more smoothly than when they arise at 8, but let's not continue to go there. So rock star mother that I am, when Clayton proved to me that he could hold down two bowls of rice crispies and a whole banana I shipped him off to school and carried on with my morning.

I dropped some books at the library and picked up the ones I had on hold. (Peaceful Parents, Happy Kids and The Secrets of Happy Families... if you care. I want to learn how to do this thing with a bit more grace). I grabbed a few items that I surely do not need at Walmart and made my way to the check-out line. I checked my phone while I waited for the lady to pay in front of me and found 2 missed calls in the last 2 minutes from Mya's school nurse. This cannot be good. So while I am mentally shooshing the line along it rings again. So I answer it and commit my #2 biggest pet peeve, second only behind people who do not make an effort bring their own grocery bags. It was too much to explain that I likely have a child in medical crisis so I just mouth the words 'I am sorry' to the checker. Mya has been seizing all morning, the last one clocked at 4 minutes but they didn't catch the whole thing. At 5 minutes they call 911. Stellar. To be fair, I did call then yesterday morning on the way in to work to warn them this was going to happen. Now I was well informed and we left it that I would check in with neurology...and I really was going to... tomorrow when we are there for our 6 month. But for the time being I needed meat and, sorry Walton's, but I don't trust your meat, so I carry on to my next stop (Walmart plastic bags in hand...I forgot mine!). I make it almost in the door before my phone rings again. They really don't feel safe keeping her in the class as she is seizing more than she is not. And they really don't want to have to call 911 so could I please come and get her. That is actually perfect, I say, because I am right down the road. I love it when things work out. So I put a call in to neurology and rescue my child.

We went back to the grocery store while we waited for neurology to return the call, because well why not shop in times like these. In the car on the ride home I get the call-back so I roll up the windows and commit pet peeve #3. She wants me to give her the rescue med if she is still seizing, which she is. About this time I am discovering the AC in the car must be broken  And the since best way to trigger Mya's seizures is to over-heat her she is now back there screaming through her current cluster while I try to explain that our rescue med has been expired for over a year. So she calls in the order to the pharmacy as we run home to get the other 2 kids. I got the call from CVS that the prescription was ready as I ran in to deposit our chicken in the fridge. Priorities. But this put me in the back of the pick-up line so I cut off a few people with turn signals on. Go ahead and judge me folks.

And this brings us to the pharmacy drive-thru where Clayton made an important discovery. While the tech and I are working on finding the prescription that is under the wrong spelling I hear Clayton repeating something in the back seat. What bud? This is not a barn! Huh? This is not a barn! Oh, you are right. I told you we were going to the PHARMacy. And that is different from a farm. This is not a barn. And the tech's heart is melting as she hands me 2 suckers. At least we made somebody's day. So now I am decompressing with one child in a klonopin-induced comma and 2 more trying really hard not to nap and I haven't read the books yet so I really have nothing peaceful or happy to say to them. But now we have rescue meds. And maybe tomorrow we will have solutions.

I would pay very well for a personal chef. And for someone to sit through naptime.

Clayton filled his tortilla with cantaloupe today. He gets a plain tortilla because he wants me to remove any conventionally accepted filling the second he sees it. Cantaloupe apparently is fine. But I won't complain. Ella won't eat tortillas. They can't even touch her plate. She got walnuts. One of them was too brown so it was thrown onto the floor. I won't complain. Clayton won't eat walnuts, no matter the shade.

The first time I intervened at naptime Ella had Clayton's beloved brown blankie and a giant evil grin. The second time she was pinning him to the floor. The third time he got to nap in Mya's bed. When that happens she sounds a little like a velociraptor. I should really capture the sound. It is impressive. We are probably going to be spending large sums in tuition at karate studios for our little man, and on anger management for our dinosaur.

How do you feel about Melatonin and Benadryl?

For the record, Melatonin: no help

We have been trying to soak up the smiles, the occasional laughs. The seizures are back and pretty frequent, the screaming ones, the jolting ones, but we still have the smiles. Last night she was cracking-up in her bed, probably reacting to our plan for a bed-time routine, meaning we wanted it to actually be bed-time. Funny mom and dad, funny. And we would go in there to see what the heck was so funny. And she would stop like nothing happened. And so we would carry on and she would start again. Funny Mya, funny.

I feel like we have settled into a rhythm, an inconvenient and exhausting never to be consistent but it could definitely be worse kind of rhythm. She likes to be held to fall asleep and so one of us crawls into bed with her for a few hours. When she is finally out we roll her off our shoulder and set her up with her bipap mask. If she stays asleep she wears it, if not we try to let her fall back to sleep alone and wait for her to let us know she needs it. It is an interesting reality, trusting she will let us know when she needs it. And she does let us know. She does need it. She has learned to arch her back to kick it off her face and so at some point it alarms and we remove it and start again. I think she spends a great deal of every night awake, sometimes hosting dance parties, sometimes not, but for the most part she is alert during the day. It is wonderful to see her so consistently alert.

We have been working with Neurology to increase her new medication but the last dosage change seemed to just bounce right off her. I wonder if this is it, if we move on to something new. We are also working with the home health agency on possibly finding a different mask and maybe a better fit, but it seems our options are very limited and this might just be it. I am trying not to be frustrated with the lack of options or the lack of sleep and focus on my time with the new Mya. I am trying to have faith that we will stumble on the solutions that will allow this child to stay alert, keep her smiles and someday be truly seizure-free. A full night of sleep would be icing on a very delicious cake.