Merry Christmas Eve!

And back to our regularly scheduled programming.  It's been over a month since my last update.  Sorry...I blame the holidays.  A joyful tumbleweed of craziness.  Merry Christmas Eve!  Abby is doing great and is still seizure free...day 68!

She had a routine follow-up neurology appointment and EEG last week.  A standard part of the EEG is having her look at a white flashing light that starts slowly and then quickens steadily until you're sure someone slipped you something funny in the lobby.  This time the tech stopped the light test short and when I asked "don't you normally do more light?" she said that she just wasn't comfortable doing more and didn't want to push her.  So that told me that something wasn't right.  We were there because even though Abby's seizures have stopped, there can still be seizure activity in the brain, chaotic background reads, etc.  But I was praying for normal, a healed brain.  And that's actually all I had left room for in my expectation file.  So when she backed off like that, I was more than disappointed...bummed...whatever word you use for bummed when you're over 30.  But the tech isn't really allowed to tell you anything (just enough to drive you crazy), so we had to wait for Abby's neurologist to call with the results.

She was out that day and it usually takes a few days to get any info so I was in wait mode, but my super hero husband called and tracked down a nurse who had her doctor's attending read it and deliver the amazing, miraculous news that it was NORMAL.  Absolutely no abnormal seizure activity.  Hallelujah!  She is the head of the division and one of the top epileptologists in the country, so I took that as true and cried some happy, happy tears.  But I still had some questions and was anxious to talk to Abby's doctor.   When I finally got her on the phone a couple days later, I asked "normal like somebody in off the street normal or normal for a child with epilepsy normal?".  And sweet music to my ears...normal like anyone in off the street kind of normal.  She said that this was not common.  That she had seen cases where a "normal child with no other issues" has had an abrupt onset of seizures with a sudden stop, but "that's not Abby and it is rare for a child like her with the issues that she has to have such an abrupt change".  She still wants her to stay on the Keppra until we see her again in 4 months and said that if things are still the same and she has another clean EEG that she'll start talking about weaning her from the medication.  Talking about weaning...a nice bend in the conservative two-years-with-no-seizures guideline that most neurologists follow.   So, we'll see!  A very Merry Christmas, indeed.

Home Sweet Home

We said goodbye to La Jolla yesterday and hello to 35 degrees and some snow remnants from a few days ago.  Love it!

Eating snow in our yard Sunday

Looking up from the playground Saturday

The girls have become seasoned airplane passengers and did great on the way home.  We dodged the "buy everyone a drink on the flight because my kids are screaming" flight once again.  But I know it's coming some day!  Sooner now that I have completely jinxed us.

Some air love

Before: fresh and excited to wear her "pack-pack"

After: mid-trantrum rolling on the clean airport floor

Our tired traveller crashed on the car ride home

It was hard leaving.  The past two months flew by, and I'm beyond grateful for how comfortable and easy my in-laws made life away from home and all the time I got to spend with them.  I can't stand the word in-laws...my family.  And seeing the girls be loved on by family that we don't get to see often enough.  Priceless.  But bigger than all the typical sadness that comes with goodbyes, lies this quiet but deep anxiety.  We'll be back for treatments in December and every month or two for a while from what I understand...it's all a bit play-it-by-ear depending on how her body continues to react, change, absorb Dr. Frymann's osteopathic wonderment. But being so far away and moving into this "maintenance" stage is scary.  I've seen Abby change into a new baby.  Yes, she's two months older which is a lot in baby years.  But she's different.  She's more alive, more curious, more connected.  And the amazing fact that her seizures have stopped.  24 days!  So, it's a bit unsettling to leave it behind.  What an incredible blessing that God led us to this woman.  And I know that His hands will still be holding her whatever state we're in.

Happy November!

November -- a month of thanks, and we have so much to be thankful for.  We are celebrating our 16th day of no seizures!  I started keeping a seizure log a few months ago and it got to the point that one day's activity would sometimes spill over onto two pages.  I dreaded every time I had to open this book.  And every time Jarvie would be feeding Abby or playing with her on the floor, and would ask "what time is it?", I knew it was because we needed to log another one.  And now I love opening this book and writing ZERO!.  Maybe silly, and a little superstitious, to be logging something that isn't happening, but I write it every day and in the same way.  It helps me remember to be grateful for another "zero" kind of day.  It's easy to get comfortable in happiness, and I've already caught myself momentarily slip into taking it for granted.  No thank you.

And with more seizure-free days passing, unwanted and unnecessary moments of worry about our family's future seem to creep their way into my thoughts.  Go away!  Yesterday, I received an email from one of my girlfriends.  Part of her email: "I don't know if you will ever stop worrying, but I can say that you will find happiness in the smallest of things.  Relish in the happy moments and try not to dwell on the future envisioned."  Her words couldn't be more true and were a timely reminder.  Have I mentioned that I have the best girlfriends in the universe?  I may be biased, but they are amazing.

Relish in the happy moments.  Here's a happy moment from Halloween.  Their love for each other melts my heart.  Abby lights up when Lucy is around, laughing at everything she does.  Tantrums are even funny.  And Lucy has already taken Abby under her wing.  Reading, singing to her and jumping for joy when I bring her out from a nap.  With some jealousy and toy-stealing sprinkled in.  I don't think I'll worry about their sisterly bond or if and how they'll play together.  I think they'll be just fine :).

Another happy moment...this morning Abby extended her arms, held her weight on her own, and twisted her body like she was ready to lunge.  She wanted an escaped ball from one of her toys and it was enough to motivate some action.  Her physical therapist would be mid-backflip right now if she saw her.  A step toward transitioning from sitting to moving, and so gratifying to see her want something bad enough to go for it!

Happy November!

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?