Getting Our Words Out

Ninety-percent of the time I use this blog to shamelessly show off my beautiful girls.  And this post is about that too, to some degree.  But I've got a lot bouncing around in my head these days, mostly regarding Brooklyn, and I feel the need to get it out a little bit.  So bear with me.

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A bit of an update on the Brooklyn front... she is seeing doctors next week for some big visits.  We are revisiting the bladder "thing"... she has been off caths for a 6 month trial, and we are retesting to see where she stands with that.  She still takes antibiotics daily to prevent UTIs, and by doing that has stayed well.  So, things look good, but we'll see what her urologist says.  She is also seeing an orthopedic surgeon for the first time regarding mostly her left leg.  She has tibial tortion to some degree in that lower leg, meaning her tibia bone is growing crooked and her foot faces in.  Her straps she wears help the hips (which also point her legs in, making the left one sometimes turn around backwards!!), but obviously can't help a curvy bone.  I doubt at this point they will do much about it, especially surgically, but this visit is just to see what he thinks.  We also hope to see the folks who made her braces and HOPE that they will try and "lift" them a little on the outsides.  She walks on the outsides of her feet, and she needs some help to level out those feet to a flat surface so she can WALK.  The girl takes up to 30 steps at a time now without her walker, if she has the space!!  HOLY MOLY!  But she is SO wobble-y because her bones are crooked and she walks like she's on ice skates with those crazy feet.  So, we've been told there are some options and we'll see what they are.  Overall, I'm looking forward to this trip.  Should be a "step" in the right direction for her.  Hee hee.  She is SUCH a rockstar.

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Now, to the talking thing.  She is making a few more "sounds."  I mean, she says "aaaaaa" (short 'a') if she wants you to open your mouth so she can put something in it.  :)  She roars in the back of her throat when she sees a lion.  A couple things like that.  But NOTHING even resembling a syllable.  They have put her unofficially under an "apraxia" label.  She sees a speech therapist once a week, and she assures me this is all progress, but let's face it... it ain't much.  She's not even two, and I have to remind myself that.  But the girl is DANG SMART, if I do say so myself.  And she KNOWS she can't talk.  She KNOWS.  And I hate that.  So, I've gone the sign language route as I'm sure you've noticed from previous posts.  And the girl has RUN WITH IT.  The "Signing Time" videos are the best thing ever, and Rachel from those videos now feels like a personal friend of mine since she enters my living room daily.  (btw, I have a link to Rachel Coleman's blog... she is a-ma-zing, a mom to 2 daughters.  One deaf, one with SB.  And she is a kick-butt Mom.  I'm a huge fan now.)

I have counted the signs I can think of off hand that Brooklyn knows and uses ON HER OWN, not just with prompting.  And I'm up to over 65.  The girl can talk with her hands!!!  It's unfortunate since she also walks with her hands now too, but that's no biggie. So, I have to learn and learn quick so I can keep giving her as much language to use as possible.  If she doesn't learn it from me who is here 24/7, she doesn't learn it.  I'm looking into classes, and I have sweet friends from church who know lots (one is even fluent and works in deaf-ed!) who offer loads of help.  It's not what we envisioned for her.... we were told lots of things we could expect to be possible problems, and this was not one of them.  But hey, I'm cool with it... now.  Of course, we hope this is a temporary thing and her sweet little mouth will just open up to talk.  But, I have no guarantees of that at this point.  And I refuse to look back 5 years from now and wish we had given her a better language foundation.  SO, we go with what works for now, and this works.  She is SO proud when she signs and is SO HAPPY when she tells us something that we understand.  She beams!  It's awesome.  And pretty cute, I must say. :)  So, if anyone has helpful hints on the AmericanSignLanguage front, send them my way.  I'm clueless, but I'm learning.  And it's fun!

Please pray for this.

Pray for wisdom for David and me as we seek out the best for Brooklyn.  We ask that you pray that she does talk and talk soon.  But if that is not the case, we ask God to give us ALL the resources to make the best out of it.  And I thank the Lord for sign language!  She is flourishing with it... being able to "get her words out" has been a lifesaver!  She has gone from a 5-month-old level of expressive communication to about a 26-month-level (past her age) in less than 6 months time... all thanks to ASL!  Pray for Reagan, as this becomes something else to consume Mommy's time with Brooklyn at the focus.  Pray that she has understanding, and that she uses this as another tool to make Reagan a fabulous big sister and a compassionate individual to others who are "different."  I mean, Reagan is learning right along with us... how cool is that!?!?  She's a great interpreter already!

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And I thank you all.  I know there are still so many who love us and pray for us, for our girls.  We are so blessed and so humbled.  I'll admit, I don't pray much for physical things with Brooklyn.  I never really feel led to, and I don't really know why.  I pray for her heart, that it falls in love with Jesus at an early age :) , that she loves and feels loved for who she is, that God is preparing a man that will love her unconditionally someday, that God SHINES His glory out of her very being.  Same basic things I pray for Reagan, although I pray other "big sister" stuff for her.  But physical stuff for Brooklyn, it just seems to "be."  But I know that God wants to hear my hopes and dreams for that stuff too... I don't know, I have to work on it.  I mean, Jesus made healing a HUGE part of his ministry for a reason... He cares about us in that way!  But I am SO THANKFUL because I know so many of you stand in the gap for me in this particular way.  Please keep praying for Brooklyn's body and now for her speech.  We covet your prayers, and we love you for it.

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Have I mentioned lately how much I love my girls?  I do.  So. Much.  Sometimes it actually physically hurts.  I'm ridiculously in love with them.  In their own ways for their own reasons, they make me SO proud and SO thankful to be their Mommy.  But things are a bit different with Brooklyn, in a way that maybe only a special needs mom could understand.  I guess it goes back to the day that doctors told us she wouldn't BE HERE.  And now she blesses people and shows them the glory of God just BY BEING.  It is so humbling. 

This week I have come into contact (via internet) 2 different pregnant moms who have gotten the same SB diagnosis we got and are considering terminating.  It keeps me up at night.  I can not imagine a world without Brooklyn in it, and I pray somehow these moms realize that their babies are PERFECT gifts.  All I can do is pray, but DANG this knowledge hurts me.  And that decision is made all the time.  I don't even know their names, but I pray for Divine Wisdom for these moms.  Join me, please.

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Ok, I think I'm done. 

Just like Brook, sometimes you just gotta get your words out.  :)  And if you haven't seen them, let me shamelessly ask you to scroll down and see the newest pics of my cuties.