Attitude is Everything

I'm staring at the monitor.  Abby's crib is only four feet away and I'm hoping that the typing won’t wake the bear.  She has been a less than an awesome sleeper lately.  Her top two teeth just broke through, so hoping that will end the madness.  I love teething.  And I love that it lasts for two years.  

So, today was one of those days that I wanted to be over by 10:00 am.  You know those days when you wake up on the proverbial wrong side of the bed, catch every red light, spill your coffee, realize you left your purse on the counter, can't muster up the patience you usually have for your kids...you know the drill.   And if you say no then, yes, you may be excused now.

Abby was cranky because she wouldn't nap and Lucy was throwing a tantrum.  So, yep, perfect time to run some errands with the girls.  We head to Toys R Us, the world’s absolute best errand to check off your list with your 2-year old in tow.  I had Abby in the bjorn and Lucy in the cart, magically transformed from toddler monster to cutest girl ever created. Bribery does work sometimes. They didn’t have the exact sleep sack I wanted for Abby, which was the whole point of the trip. The fun really began when I accidentally turned down the baby doll aisle.  My child is beyond a “baby doll girl”.  She is obsessed, sporting an entourage at all times.  But I told her she’d get a prize if she stopped crying in the car and she only has 47 babies at home, so what the heck.  Funny that I thought I could actually talk through the purchasing process with a doll obsessed 2-year old, confused by the temptation of every baby doll in existence in the same place at one time.  I’m such a rookie.  Do you want the one who goes poo-poo?  Drinks a bottle?  Cries when she's hungry?  Grows hair?  What?  Screaming soon ensued because, of course, she wanted every single one, so I grabbed the closest one and ran.  To the check out line, 20 people deep.  She didn’t forget all the babies left behind.  Nobody did. 

Anyway, it was just one of those mornings….one of those blah mornings for no apparent reason.  

Later I was reading Lucy a book, sticking together and turning a few pages at a time to get through it faster (which rarely works anymore, smarty pants) and reading only the first line of every page.  I really do love reading books with her, but I was more in the illustrations only, five word max per page kind of mood. Then a couple hours later, I listened as Mimi (my mother-in-law) read to her.  Book after book.  No skipped words, no pages "accidentally" stuck together.  She even added commentary.   A book about animals turned into a conversation about Lucy’s favorite pets.   And I learned that we had a turtle, tiger and two butterfly pets at home that I have failed to notice. Valuable information.  

It was a reminder, a small aha moment, that an event as small as reading a book to a two year old can be two completely different experiences.  I'm not beating myself up about it.  We’re all allowed to wake up on the wrong side of the bed once in a while.  We’re allowed to have grumpy, short-nerved, bad or sad parts to our day every now and then.  But it was helpful to acknowledge it, regret it a bit and tell myself that tomorrow is going to be a better start to today.

Abby had her eighth straight day of no seizures (only 1 in 10 days) which is more than enough to take the blah out of any day.  Her neurologist said not to increase the Keppra after all (great news!) but wants to keep her on the current dosage, which wasn't a surprise.  In so many words, he said that lapses in seizures can happen for a couple weeks and then come back, which is always in the back of my mind anyway.  And he won't be ready to discuss weaning off anything or lowering dosage until she's been seizure-free for two years.  When I gave Dr. Frymann the happy update yesterday of still no seizures, I added my usual disclaimer. "I know better than to think these are gone for the long-term" and she looked at me and asked "why would you think that?".  Love me some Dr. Frymann positivity and feel so blessed that her hands are on my baby. 

Vision Therapy

Today Abby had her first Vision Therapy appointment.  Twenty minutes into her initial consultation last Friday, Dr. Valenti thought that she was blind in her left eye.  But by the end of the 90 minute appointment, the better news was that her eye is functioning, just not very well.  Hello rollercoaster.

So she needs to go twice a week to try to strengthen her sight out of her left eye.  She looks at flashing lights, toys, and a slew of gadgets. A baby rave.  She actually has a blast and the staff loves her, so it's a fun experience.  And Dr. V seemed really optimistic today, saying that she was responding well to all the exercises they were doing and sent us home with some homework.  And, no seizures again!  A good day.

Another Goose Egg

Today's seizure scoreboard reads ZERO!  Thank you Lord!  Thank you for blessing us with another day without having to hear her head hit the floor or the hard, plastic toy she's playing with.  A sight and sound that breaks a piece of my heart every time.  Or see Lucy drop her head and shake her body in imitation of what "Abby says".

Abby has only had one seizure in the past five days, down from 50 a day two weeks ago with no change in meds since mid-August.  Excited to talk to her neurologist today to see if he still wants to increase her Keppra dosage.  Or if he'll do what he did last week when the number was slowly decreasing.  Half heartedly acknowledge, then quickly dismiss, the fascinating possibility that it could be our treatments with Dr. Frymann that are helping her.  The world of neurology and cranial osteopathy don't exactly live in harmony.  Aside from the drop in seizures, she just seems more active, connected, eager to move.  She even cries when Lucy steals a toy from her.  Sounds like a small thing, but it's big in her world.  I'll have to keep myself from attacking Dr. Frymann with love tomorrow at our appointment.  I want to hug her to pieces and kiss her feet for the changes I see in my baby since we started seeing her a month ago.  And I guess you never know what is actually helping, but it's definitely not hurting.

Her seizures started two weeks after we learned she had a 20p13 (chromosome) deletion.   August 15.  I knew epilepsy had it's place with this disorder, but her EEG looked good so I thought we were on the good side of that.  We had at least escaped that.  During those two weeks, I tried my hardest to keep from worrying about the future and let her smiling face tell me that it was okay.  Not easy.  Okay, impossible most of the time.  Then the seizures started which made it particularly hard to be thankful for "today" when today I was watching her jerk and shake 40-50 times a day.  Not knowing what was happening inside that head of hers.  Getting a "we're not sure" to every question I had for her doctors.  Hearing that medication will not likely help her because of her chromosome disorder, but try this toxic drug with serious side effects and we'll see.  Not their fault, just hard to swallow.

I know better than to do the happy dance in celebration of never seeing another seizure.  But I am soooo happy, so I'll dance in celebration of TODAY!  And I'll hear Lucy say "Mom, no.  Don't dance please".  Really?  She's two and already embarrassed of my mad dance skills.  And, it's 'mommy' to you.

Fall Break

The girls and I went home for a week and hit the timing perfectly. Fall was in full effect, leaves still hangin on.  Crisp, Colorado fall...sits pretty high on my favorites list.  Lucy was ecstatic to be home.  Ran around the house like she had just pounded a gallon of Kool-Aid and 10 Fun-Dips, running suicide sprints from Hank to her toys and back.  It was good to be home.

Enjoying a temporary exemption of the no-lying-on-the-outdoor-cushions rule. 

Lisa and Grace came out for a few days and I got some much needed sister time.  Lucy and Grace play so well together despite the 6 year age gap...so cute to watch.

And now we're back in La Jolla for a few more weeks of treatments with Dr. Frymann.  Falling into our home-away-from-home routine and loving some more family time.  Not a bad place for a temporary relocation :).  And Abby didn't have a seizure yesterday that I know of.  Crazy...could this really be helping?