Friday, January 27, 2012

Two scoots forward

It's been awhile since I have done a real update on Aurelia.  Since she has days left as being the one and only Baby Hawk, I think she deserves a post all about her.  I've also been doing some work on her baby book which causes me to have a lot of sentimental moments as I look back on how far she has come over the last 17 months.  This kid is truly incredible (and I'm not just saying that because I'm her mom, I've had lots of healthcare professionals back me up on this one).

Part of the reason I have not updated on Aurelia as often as I should or would like to is because it can be really hard to explain all the unknowns.  There are a lot of "mights" and "maybes" in her global diagnosis.  And I don't really see the point in saying, "Aurelia might have ______," or "There's the possibility of ______." But I also realize that many mights and maybes won't become defined for a long time.  It's like our kid is this tiny little puzzle with 1000 pieces and we're trying to figure out how they all fit together.

We still try to move forward in the middle of all these muddled unknowns.  And, as with many things, we often feel like it's two steps forward and one step back.  In the last few weeks, she's made some definite steps forward. . . and by steps, I mean scoots.  And I want to celebrate the two scoots forward.  I don't even want to think of the possibility of one (or any) scoots back.  Maybe they won't ever happen.  Maybe this forward trend that we're seeing will just gain momentum and never stop.  Honestly, I know that we will have setbacks in her future.  I know she has a long way to go.  I know that some of those unknowns are big and scary. . . but that doesn't mean I have to let them loom off in the distance.  Instead I'm going to focus on the here and now, a time that is positive, happy, and incredibly adorable.

So, let's talk about these scoots forward.  I don't like how that sounds.  I promise, our baby doesn't have worms.

Mobility: Her preferred mode of transportation right now is scooting around on her rump.  And she is FAST!  We've been working really hard to encourage her to crawl instead of scoot.  The frustrating thing is she CAN do a little army crawl (more wounded veteran crawl), but she only does when we force her.  She can even crawl up (not down) the one step in our house, and then she scoots on her way.  It is so exciting to see her mobile.

Sensory:  This kid has some serious sensory issues.  For the last several months, she would randomly scream and rub her eyes throughout the day.  She would do it in her sleep.  She would do it repeatedly and almost get stuck in the scream.  We felt like the sensory scream ruled our lives for awhile there.  We could barely hold a conversation.  It's hard to explain what happened.  She still does it occasionally.  But following eye dilation at an ophthalmology appointment 3 weeks ago, she suddenly stopped.  She still craves and needs a lot of input (like swinging, sensory brushing, bouncing on an exercise ball, and different movements), but it's nice to be able to go out in public without getting all the stares and comments.

Vision: Speaking of ophthalmology, Aurelia's been making some great strides with her vision.  Sometimes we feel like we can see her little brain working to process what she's seeing.  Sometimes her eyes look really wonky.  We've also noticed that she can't turn her eyes to the left and has to turn her entire head to the left (another part of the puzzle).  But she's started giving more eye contact and will even cover up parts of our face with her hands to stay engaged visually.  She is pretty farsighted, too small for glasses, and has quite a few other eye issues that we're just learning about.  However, we love getting little glimpses of great vision and are learning ways to help her see her world.

Growth: This is still a big issue because she really is just so small.  I realized this when someone said to me, "Six months?"  I assumed they were talking about my blossoming belly and said, "Eight months."  They responded, "She's just so petite!"  This gave me a bit of a chuckle because if Aurelia was six or eight months old, this pregnancy would be pretty miraculous.  Back to our little one, she has an official weight check on Tuesday.  We feel like she is chunking out a little and she's now in 9 and 12 month clothes.  She has 3 teeth.  And we feel like every day she looks more like a toddler.  

Sleep: I talk about how I love my spouse around here a lot.  Since he's been home, he's gotten up with Aurelia almost every single night.  And I am loving the sleep.  Aurelia still gets up twice a night, sometimes more.  Every once and awhile she'll wow us and only get up once.  It's incredible.  A new theory is that it has to do with her septo optic displasia. . . we don't really know what that means and don't expect you to either.

Speech: Unfortunately, there's not much to say.  Her favorite word is, "Diga."  We don't know what that means.  She seems to understand a few words sometimes, like her name, milk, no, Padraig, and up.  She can clap her hands.  She plays peek-a-boo.  And she responds to the question, "Where's Aurelia?" by shooting her fist into the air.  And she just started to sign, "More."

Overall Picture (if you've read this far):  Generally speaking, Aurelia is doing great!  Yes, she's well delayed.  Yes, she has some disabilities.  But her shunt is working great, praise God.  She is rarely sick.  She is very content, happy, and responsive.  This kid is a joy to parent, even during sleepless nights.  We credit your prayers (keep 'em coming!) and our amazing care team.  Right now we're starting up all her 18 month appointments on top of her weekly Occupational Therapy, Physical Therapy, and Early Intervention.  While it keeps our schedule full, it's so encouraging to know that we have such a stellar team caring for our child.  And that's our kiddo.  She's a champion!


Jocelyne said...

Your angel has made a lot of milestones in the past year and half. I am sure at times her delays may be overwhelming, but as you indicated in this post she has come a long way. Prayers for continued progress.

Erika said...

Amazing! She really does seem to be doing great, we will keep praying for her to steadily become greater, and to pass many more milestones. God is good.

Anna, also known by some as Nong said...

That little girl is just pure joy. I am so grateful for her updates...and I am just so impressed by her, and her parents. You are all on my mind big time these days. I can't believe you'll have another little one within days! Love you all so much.