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Love is a Doing Word

I‘m sorry for doing this in a blog entry, and not writing to or calling each person individually who expressed concern for our daughter. I’m struggling to even come up with a word for how– truly affecting it is, to have all your support, and all your prayers. We can’t thank you enough. Again, I wish I was well enough to speak to all of you personally. Unfortunately, the chest cold isn’t done with me, and communication– just being conscious, really– is draining right now.

The very short version of a very long story is this:

Addie is having spells. She calls them eye twitches. They began as eye twitches, a few months back. I mentioned it on here. I assumed it was from her computer usage and TV watching (both, shamefully, high enough that it would warrant concern). We cut back on both. Thinking it was a potassium deficiency, we upped her banana intake. We made her sleep more. The eye twitches seemed to subside a bit. We assumed it was almost over.

Then the eye twitches came back. More strong. She began to drop her head while having the twitches. She said she couldn’t speak during them. They went from once a month, to once a week, to daily, to multiple times a day, in very short order. Other symptoms have shown up in the last few days. She slumps during some of them, her arms go up and rigid during all. She makes a low guttural noise. She drools. She has facial paralysis and slurred speech afterward, brief disorientation. When I hold her and look under her hair, her eyelids aren’t twitching at all; it’s as if she’s in the deepest, most frantic REM sleep ever. Her eyes are darting everywhere under her lids.

These last five to twelve seconds. She says she is conscious during them, can hear what I’m saying but is unable to answer. She can feel them coming on. Wondering if they were happening during the night, I brought her to bed on Thursday, and woke up at 4 AM to her slumped in my arms, twitching.

I hold her during most of them. Sometimes I murmur reassurances to her (it’ll be okay, almost done, Mommy’s here), sometimes I do other things like counting out loud see if she remembers it afterward (she does). The first time it happened I pressed my face into her hair, eyes wet, and whispered: Oh, my little girl.

It hit me later that was the exact phrase I’d spoken into her tiny, newborn ear when we were in the NICU seven years ago.

I took her into the ER this week. They sent me to a pediatric neurologist. We had an appointment yesterday, the earliest they could get her in. The neurologist, like the ER doctor, made her do a series of rudimentary tests: hopping on a foot, touching finger to nose, answering questions. She seems fine, was what I got. Maybe it’s just tics. That would be easy, the neurologist said. She wouldn’t even need medication. She’d just grow out of them.

While it would be easy if she had tics– and trust me, I think she does, she does these little spazzy jazz hands when she gets excited, which is cute but definitely tic territory– this, her spells, are not tics. There is no doubt in my mind. I know this in my gut, I KNOW this. I am sure. These are seizures. She is having seizures, and I felt like I was being totally brushed off because she “seems totally normal”.

I told the doctor, listen, she seemed normal at birth, too. She had perfect APGAR scores. Nobody knew by looking at her. They just knew she was seizing because she stopped breathing. I said, she was on heavy doses of phenobarbital for the first year of her life AND still having seizures, and she hit all her milestones. This is the kid who woke up multiple times after being dosed with anesthesia during MRIs. Her being alert doesn’t mean anything. PLEASE. We need to look into this. It’s getting more frequent and more serious– and she’s at a higher risk for strokes as is.

The doctor finally begrudged me an EEG. They initially wanted to do it for the end of December. I pushed for next week. Still, they said it would be weeks before results, and end of January before they’d see me again.

I took Addie out to the car after the appointment– sweet, bubbly little Addie: “Are you hungry, Mom? I’m so hungry. I like Panera, they have the best mac ‘n cheese, we could do a LADIES DATE, just you and me, sugar bear”– and I slumped in the front seat, completely physically exhausted and near tears. So fucking FRUSTRATED. My head hurt, my chest hurt, I hadn’t slept right in a week, and I have this poor kid who is having something serious going on and I have to do a whole song and dance to get them to TAKE CARE OF HER.

Call Jason. He can tell I’m thisclose to a total breakdown. I get Panera for Addie afterward, and he surprises me by coming home to take care of us. (Also, I should interject here that Michelle offered to hang out with us and play nursemaid, too. So. I have great people all around.)

I’ve spent the last day in bed, hacking and drifting in and out of sleep, and I just decided: you know what. You know what. I’m not going to be bitter about this– but I’m not going to be passive, either. I know there’s something wrong with my kid, and I’m not going to let a window of time where I could do the most good, get her the best treatment, pass me by.

My incredible pastor/friend Jonathan Bow gave me the name of another pediatric neurologist, this one at Duke, so I’m going to call his office Monday and see if I can get an appointment. I’d like a second opinion. I’d also like to see a doctor who specializes in epilepsy, which he does.

I have no medical degree. Any of my guesses come from observing Addie and hours of follow up Google-ing. Having said that, I believe she’s having simple partial seizures. The majority of her symptoms fit.

On the plus side– and there are many, I keep reminding myself– as it stands, if they are tics, they will supposedly be grown out of in a few years. If they are seizures, they should be able to be treated with medication– and could also be grown out of by adolescence. My only concern, and the only thing I need ruled out immediately or acted on immediately, is if this is related to her blood clotting disorder and is symptomatic of a stroke. Or a tumor. If this isn’t life-threatening or degenerative, then I can rest a lot easier.

In the meantime, we’ve been spending time with her– and Eli, both the kids– and counting our blessings. We live in a great area for hospitals. Duke is all of fifteen minutes away. We have healthcare. We’re switching coverage now, and while they may absolutely kill us on premiums with any issues that arise, we can afford to pay them. We have a tremendous support system. We have a lot of people who care about our little girl.

We are really, really lucky.

I’m going to go rest. I think this was all I had in me tonight.

Thank you again for your love and comfort. Will keep you all updated throughout next week. Sorry to ruin my daily posting… It took me a little while to be able to talk about this.