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.