Suzy Q Homemaker

It’s been just nice enough outside around here to do some swinging.

You know you want to squeeze his little thigh rolls.  I always do, too.

Timothy’s neurologist praised me for having videos of Timothy’s spells.  It’s helpful to him because it really is hard to describe in words what the little twitches and jerks look like.  The crawling with his head down is not typical, but he does fall at least once a day.  The sideways jerk sometimes throws him to the ground as well.  But it all started with a little shiver…

I suppose I should explain yesterday’s Wordless Wednesday post.  Of course, every time I sit down to write about this, the internet isn’t working or Timothy decides that it would be a great time to pretend he is a newborn and falls asleep in my arms.  When that happens, I’m still able to be on the computer, but I’m not going to type out an entire entry with one hand.   One-handed typing is only reserved for tweeting, facebook updates, and googling.

Anyway, a couple months ago, I noticed that Timothy was nodding his head.  He was also randomly crashing to the ground while crawling.  At first, I thought maybe he was just clumsy or tired, but it looked really, really strange.  I managed to catch a few episodes on video and I promptly took them to the doctor.  Initially, his pediatrician diagnosed him with an ear infection and that “explained everything”.  We finished the antibiotics and Timothy was still doing it.  So we went back to the doctor, I showed him the videos, and we got a referral for a neurological evaluation.

I had to push the office to get seen!  The evaluation wasn’t going to be until May (which was a month away at the time).  I am not a patient person, and because I fear the worst in just about every medical scenario, waiting an entire month was not going to cut it.

Fast forward to a couple weeks ago when we saw the neuro for the first time.  After reviewing the videos and doing a standard exam, he called what Timothy had “myoclonus with head drops”.  He also found Timothy to be mildly hypotonic (low muscle tone).  Our first goal was to obtain an EEG and an MRI to rule out scary stuff like tumors and severe seizures.  The EEG was done that day and was normal.  The MRI, though, had yet to be scheduled for a later date.

Last Thursday, the pre-op nurse called with instructions for the MRI.  Timothy was going to have to be sedated since the MRI was going to be a contrast study and would take an hour.  You obviously cannot expect a one-year-old to lie down and be absolutely still for that long.  I mean, that’s like asking him to recite the entire Declaration of Independence while doing a tap-dance to “Putting on the Ritz”.

So we were instructed not to give Timothy any food after midnight and only clear liquids until two hours before our arrival time.  I had to insist on being able to nurse him until four hours before arriving because the child is still on a mostly breastmilk diet anyway.  He also still nurses during the night and how was I to deny him that?

Getting through Thursday was hard.  I was anxious, terrified, and found myself running around the house wiping down things that didn’t need to be wiped.  I wish I could bottle up that nervous energy and save it for days like today when I need to get stuff done.  Yet here I sit!  I ended up drugging myself so I could actually get some sleep.

The day of the MRI, Simon went to his Mimi’s house and I drove in a stupor all the way to the hospital.  We arrived on time and I think I floated through the next couple of hours.  The Versed they gave Timothy in order to relax him made him the most hysterical baby ever.  He laughed and laughed at the nurse who was handing me paperwork.  I kind of wish they had given me some, too.

Timothy was a hungry, hungry baby when he came out of anesthesia and a very good friend came to sit with me while I nursed him in Recovery.  From there, she walked me out to the parking deck and I drove home.  Timothy and I both crashed as soon as we stepped through the door.

Thankfully, we had things like Jamie’s triathlon on Saturday and a birthday party on Sunday to keep us busy.  Otherwise, I probably would have had to beg for more anti-anxiety drugs to get me through the weekend.  Monday morning, I bugged the neurologist’s nurse again to tell her I was anxious to get the MRI results.  We already had a follow-up scheduled for Tuesday but I absolutely could not wait any longer.  Do you blame me?

Completely normal

Words cannot even express the enormous weight that lifted off of my shoulders when she said it.  That MRI ruled out a whole host of things that could have been causing his little jerks and twitches.  What we’re left with now is a diagnosis of “benign myoclonus”.  It can’t be called epilepsy just yet because we weren’t able to catch any seizure activity on the first EEG.  This summer, if Timothy’s still spazzing, we’ll most likely go in for a 24-hour video EEG to see if we can actually get some of the movements recorded and whether or not they actually involve his little brain at all.

In the meantime, Timothy’s going to be evaluated for physical and occupational therapy so his muscle tone can improve.  The good part about that is that it’s non-invasive and might actually be a lot of fun for him.   Aiden was in therapy as a baby and he did really well.

Like I said in the title of this entry, “benign” doesn’t make any of this less scary.  I was honestly terrified that Timothy had a massive tumor or something, but it sucks still not knowing the underlying cause of his bizarre movements.

For all the effort we went through not to birth Timothy in a hospital, he is bound and determined to be there anyway.