Grace

Sick sister cuddle session

Today I'm swimming in a pool of appreciation and thanks.  Feeling so grateful that Abby was sick last week and had no seizures.  Is there a word that's even bigger than grateful?  Maybe all caps and an annoying overuse of exclamation points?  GRATEFUL!!!!!  It's been a rough couple months in the health department and our house has been hit with croup, the stomach bug, ear infections, good ole fashioned random viruses and then Hand Foot Mouth disease.  Seriously, could we please find a more disgusting name for a virus?   But I guess it's fitting.  

Abby was 6 days short of being seizure-free for one year when she caught some sort of virus from Lucy's croup, ran a 100 degree fever and later that day had 19 seizures within an hour.  The day before, I was quietly planning a small celebration. We had just had her 2nd birthday party, so nothing too big but still something special to mark a wonderfully, fabulous seizure-free year for our little angel.  I didn't realize how tightly I was hanging on to that milestone until it slipped from my hands.  Like making it through an entire year would mean locking her door against all things harmful, protecting her healing brain forever. It blindsided me seeing her go from just feeling a little down and out to being completely lethargic, eyes rolled back followed by her tiny body involuntarily jerking.  It just wasn't on my radar anymore as naive as that sounds.  And my heart broke to pieces.  I was furious.  I was terrified. It all came rushing back like a mad flood, carrying me back to the days of 50 seizures a day, where I was certain we were to stay.  But that night her fever went away and took her seizures with it. 

Then three weeks later she had an ear infection, 102 degree fever and 8 seizures.  She was in La Jolla with Jarvie seeing Dr. Centers, and I almost dropped the phone when he told me.  Funny how quickly shock can sneak back into your space. 

Feeling down and cute

Two separate bouts of seizures triggered by fever and sleep deprivation.  So this past week when she had yet another ear infection and two-day fever my edgy, stressy self was not so much anticipating a seizure or spending the day staring at her with anxiety.  But I was tip toeing around the probability of it happening, not wanting to really think about it in case the law of attraction really exists.  But here we are, Abby covered in red pimply sores (because when it rains, it pours and what better way to celebrate an ear infection than to pile on hand foot mouth), feeling back to her happy, curious self.  Trucking through those feverish days with no seizures.  Thank you, God.

And in my same prayer of incredible thanks for this, I'm asking for forgiveness.  Forgive me for accidentally feeling entitled.  For forgetting what an enormous blessing every day is that Abby does not have a seizure, every day that she makes progress, every day that we have breath moving in and out of our bodies. Of course I noticed that she didn't have a seizure during this sickness.  Of course I was happy about it and thanked God for it.  It was acknowledged, smiled upon and then I went on about my day.  But with the busy-ness of life and the comfort and complacency we find in the good and "normal", it's all too easy to brush through some amazing blessings.  So I'm on my knees now screaming THANK YOU!!!

How Is Abby Doing?

“How is Abby?”  If I had a nickel for all the times I hear this question.  Well, I’d have a whole lot of nickels.  And it makes my heart smile a big-toothed grin every time.  I've realized that it's been 6 months since I've properly updated the incredible people in our lives who think of and pray for our girl.  Time flies :).

My short answer…Abby is doing great!  She is amazing.

My not-so-short answer…Abby is doing great!  She is amazing.  And if I were one of those people who could see a person’s aura, I would be blinded by her halo on a daily basis.  Her joy is busting at the seams.  And so is her will to move.  She has made such strides, learned so many things in the past 6 months, working so hard with such a sweet determination and motivation.  And when she masters something new, the celebration is oh so big.  Like, move mountains big.   

Abby sat up from lying down all on her own for the first time in May.  It was by far one of the most exciting moments of my life.  I had seen her get so close and want it so badly for so many months, yet it still felt like it came out of nowhere.  As soon as she was up, our eyes were locked and she was laughing, clapping, full of celebration.  Like "did you just see that, mom?  I did it! I DID IT!"  That look of accomplishment and pride on her face was breathtaking.  Happy tears are streaming down my face just remembering it.  She was gleaming.  It was beautiful.

I'd be a liar if I said I didn't wish things could come a little easier for her.  That she didn't have to have PT, OT and speech therapy every week to try to help replace limitations with freedom.  That it's not stressful that she's 21 months old and still only eating purees.  But...and this is an enormous, all caps, 100 underlines 'but'...the challenges make the good things, the learning to sit up on her own moments, so exciting and INCREDIBLY AWE-INSPIRING.  The smile she flashes when she learns something new or when what she asks for with a sign is understood and answered...it melts your heart into the biggest puddle.  And it's such an amazing gift to live beside her and partake in her parade of celebrations.  But I digress...I could write about that roller coaster ride for a while.

Abby is a bottom scooting machine and there are times when one of her favorite songs comes on or when I just walk into the room (she is in a fierce mama phase), and she starts bouncing with such energy that I swear she may catapult herself from sitting in frog position straight through the ceiling.

She started bearing weight on her legs in February (woohoooo!).  And now has enough strength and balance to stand at a table (with someone close or diving distance away).  And just these past few days she's been moving her feet more.  We'll be holding her up and there goes a foot flopping in front of the other one.

She says mama and hi and signs baby, eat, more, all done, drink, open, please, thank you, up, dance, slide and airplane.  And she understands it all. Ask her to honk the horn in her push car and she slams that horn.  Leave a brush on the floor and she’ll pick it up and pretend she’s taming her do.  Ask her to pet Hank more gently, and the slapping turns to soft strokes.  She gets it.  She absorbs it all.  She even got mad at Lucy the other day for not sharing her baby, and then handed everyone in the room a wooden piece of cake.  Everyone but Lucy.  Don't cross this lady.  

She still isn't eating any finger foods so Bottle and Purees continue to fuel her fire.  She has started putting the spoon to her own mouth, has a spoon trick that makes Lucy laugh without fail, and even plays a little spoon-in-the-bib hide ‘n seek for a praiseful laugh from us.
  

And she hasn’t had a seizure for over 9 months!  Can I get an Amen?!  Thank you, God.  Her last EEG a few weeks ago came back abnormal.  Cutting through all the medical terminology, she has an ongoing high risk of seizure activity.  So they won’t consider weaning her off of her meds for another year.  The news knocked the breath out of me for a couple days. After an uncommon (according to her neurologist) 'normal' result from her December EEG, I was banking on another 'normal' and didn’t leave much room in my mind or heart for anything else.

Sweet smiles after some not-so-sweet fits

This shouldn't have been a huge shocker.  I mean, our sweet girl has epilepsy and significant developmental delays due to a genetic disorder, right?  So, it's pretty unlikely for normal EEG's to come her way.  And it's not like we received new, unsettling or sad news.  And even though abnormal EEG's don't guarantee that your child will have seizures and even though it has nothing to do with illustrating cognitive delays or intelligence, it was enough to spur the fear, doubt, anger and heartbreak that I haven't felt in a while.  So, I let myself be sad.  I let my mind go to all the worry places about her future that are usually trumped by my pure love of everything she is and isn't, and the beautiful gifts that God has already poured onto us through her.  And after two days I felt a slap out of nowhere.  Hey!  She still isn’t having seizures, which is beyond amazing!  She is learning some big stuff and getting stronger every day. She and Lucy laugh together and have a strong sister love and they always will.  God has her in the palm of His hands. She is upbeat and irresistable.  She is healthy and happy.  And I'm ever so grateful for those blessings.

And how is Lucy?

Lucy is a little girl of extremes.  Extremely sassy and challenging, extremely hilarious and extremely tender and warm.  She loves Abby like mad.  She also has creative placement of her baby doll when she's teaching her to fly...into Abby's face.  I asked her yesterday what her favorite part of being a big sister was, and she said "Abby".  Profoundly simple.

She starts preschool at the end of the month, and she's pretty proud of the fact that she's big enough for school.  She went to the school's summer camp for a few weeks to get her feet wet and she was in hog heaven.  Seriously, how does it go by so fast?

Party Time

Our reason to celebrate today?  100 days of zero seizures!  

Milestones

So, the combined message from Abby's therapists and doctors is that she is at a 6-7 month old level developmentally.   It stung the first time I heard such a direct comparison.  It was hard to switch gears from the vague “she’s behind in x, y and z” to such a black and white statement.  But I understand…you need a baseline to track progress and change.  And, hey, the truth is that she is doing things that most 6-7 month olds are doing.  But she’s doing them.  And she is doing more this month that last month.  Thank you, Jesus.   And that’s the focus!  Abby has a special and different pace and she may never do things that Lucy or other kids can do, or she may do some things differently, or better!  It’s an up and down wave of finding peace in that unknown.  Finding patience.  Fully trusting God and being grateful that He has Abby firmly in His hands.  Finding a way to accept and be okay that things are different, that even if progress is slow or someday stops or never starts in some areas...that it's all okay. I'm there most of the time.  I would love 100%.

Soooo big!

We have a scooter bug on the loose.  Abby continues to be more engaged and active and now scoots on her little bottom to get across the room.  I’ve even gotten a couple visits in the kitchen from all the way in the playroom!  This is good and bad.  Seeing something across the room, having the motivation to go get it and having the desire to explore is good…it’s fantastic!  Her physical therapist, although excited that she’s moving, is less than thrilled by her technique.  Crawling has a huge cognitive benefit, so we’re supposed to discourage her when she gets her excited scoot on by flipping her on her hands and knees to drive home the whole crawling thing.  But getting in the way of that enthusiasm doesn't happen as much as I guess it should...not a fair homework assignment! 

Abby has added some other games to her bag of tricks…”how big is Abby…soooo big”, giving hugs on demand (a household favorite), waving “hi” and “bye”, shaking her head when we say “no”.  She has started rolling a ball back and forth with us...a great step toward understanding turn-taking and game-playing.  It’s pretty amazing.  I took all of these small performances for granted when Lucy was flying through them.  Everything came so easy to her and then she was on to the next trick, the next milestone.  Seeing Abby develop at such a slower pace has had its challenges, but also gives me the opportunity to soak it up, respect and acknowledge just how much these little humans do in such a compressed amount of time.   

I go through phases where it gets frustrating. Just about every mealtime is a struggle.  She eats 1-2 meals of pureed food a day, with the bottle being her main source of nutrition.  I so want her to be eating table foods like other 15 month olds, or at least eat pureed food with excitement and consistency.  I think it's a mom thing...it's one of the top 5 duties (okay, #1, really)...feed your baby!  She'll put a dirty shoe or a spikey sensory ball in her mouth with no hesitation, but baked sweet potato? avocado? banana? cheerios? puffs? even cool whip?  No ma'am.  Won't get it near her sweet little mouth.  But they say it's a great thing that she's mouthing other objects even if food isn't on her list.  A good sign that she will someday be into it.  It will come.  Be patient.

I remember the first couple months of double bath time with both girls in the tub.  Abby was 10 months old and sitting in the bath seat because she wasn’t strong enough to sit on her own yet.  Her head would hit the bar from a seizure, she’d slide around…I felt like I needed 4 more arms.  And I remember one time mid-bath I just started crying.  Baths are supposed to be fun!  It wasn’t how it was “supposed to be”.  And Jarvie calmly told me that it’ll come.  It will come.  He is my constant positive force.  I couldn't see past that day, that hour.  And it seemed like things would always be that way.  But now they splash and laugh and instead of crying about it not being “fun”, I'm scolding them to keep the water in the tub J.   I think back on that time when I get discouraged as I'm dumping yet another bowl of uneaten food in the sink, 11 months after first introducing solids.  It will come.

Lately, I've caught myself staring at her nonstop, just in awe of her bright energy, patience, love, creativity and adaptability.  It's impossible to be in a bad mood around her (well, accept maybe at 3:00 am when you'd rather be sleeping).  Yes, her path  will be different but she'll figure it out.  She enjoys life too much to sit by and watch it pass...she'll find her own ways of doing things.  Scooting to get a toy if she can't crawl, and proudly beaming about her achievement.  What a gift.