Music to My Ears

With the arctic temperatures we've been having lately, this stay-at-home mom has been staying home more than normal.  Not to mention that this year has been an epic one for influenza, and the thought of my little ones getting it, especially Avery, has pushed my germ paranoia to a new level.  So just to be clear, I've been home A LOT lately.  There are times when staying indoors too much gives me cabin fever, and I'm sure as spring gets closer, that will happen.  But for now, I'm okay with staying home.  I have to admit though, I have become one of those frumpy moms who stays in her pajamas all day.  If I have nowhere to go, I shower and put clean pj's back on.  One would think that being home so much would result in a perfectly clean house, right?  Wrong!  Somehow, we make even bigger messes despite my non-stop cleaning.  Plus, somehow, me getting dressed only results in more laundry, since at some point in the day I usually end up with someone's food...or worse on me.  Never judge a person until you've walked a mile in her shoes...or in my case, pajamas, right?  Don't worry.  I'll be dressed appropriately when the weather warms up and I'm tempted to leave my cozy home.

Anyway, one thing I've enjoyed especially lately has been just listening and watching my kids play together. I absolutely love how my kids are playmates and friends.  Avery wasn't so fond of Emerson when he first got home from the hospital, but he has warmed up to her so much that I think she's officially gone from "noisy, suspicious person" to "entertaining, fun person" in his book.  While Bryson is gone to school during the day, Em and Avery share toys and watch Barney or Elmo together.  She yells and points whenever she sees drool coming from his mouth so that I'll come clean him right away.  She peeks down the back of his diaper and even sticks her nose down there to see if he needs a change.  She waves her hand back and forth and says, "Shoo!"  even if he's clean!  Many times I catch her sitting in his lap, and he's just looking like, "Okay, whatever!"  They giggle and laugh, and she tries to "help" take care of him.  She thinks his therapy sessions are supposed to involve her, and even when the therapists aren't here, she pushes his walker over to him as if to say, "Time to exercise!"  She kisses him, and he gets his hands around her legs or in her hands sometimes.  They're truly so much fun to watch!

At a doctor's appointment together.

Em checking out the diaper situation.

Sharing!

And then Em climbs up in her little chair at the front window as it gets close to time for Bryson to get home from school.  She stands there and points and yells "Bub Bub" until the big yellow bus finally stops in front of our house.  She follows Bryson wherever he goes, whether its down to the basement, up to his bedroom, or into the living room with Avery.  Admittedly, it gets a little noisy, and I have to offer frequent, "Settle down" reminders as they chase each other in circles or hide from one another.  And Em has developed an ear-piercing shriek that must be the result of her being the youngest of three and baby to two big brothers.  She certainly doesn't go unheard!

The other night, Phillip and I were sitting on the couch down stairs talking and all three little ones were up in the boys' room playing.  We heard thumps and shrieks and clapping.  Yes, they were being way too noisy and making way too big of a mess, but I told Phillip that listening to them was what I always envisioned it would be like when I was a mommy.  Of all the many surprises and complications we've had, watching my kids play, love, and learn together is what makes the hard times of being a parent seem so much easier.

Those giggles are like beautiful music to my ears.  And then I'm brought back down to earth again as Bryson yells, "Mo-oom!  Emerson is... (fill in the blank with some annoying or destructive toddler behavior)."

Oh Bryson, I think to myself.  You've not seen anything yet!

Bethany

Speaking Up

I'm just taking a moment before Avery's speech therapist arrives to post, because I haven't been the most regular in my blogging lately.  2013 is shaping up to be an interesting year.  It's funny how when you're young, you imagine that when you're finally an adult at the ripe ole' age of 31, life will be smooth and make so much sense, and decisions will be so clear to make.  Reality check.  Not true!  At least for this gal!  It seems like there's this life that I've envisioned and then there's this one I'm living.  Don't get me wrong; I enjoy my life, and I'm blessed in ways beyond what I ever imagined!  But there's doors that seem to be cracking open that I didn't anticipate and others slammed shut that I thought for sure were right for my family and me. 

Right now we're fighting a "battle" if you will, with Avery's insurance coverage.  Phillip and I started off as a married couple with very little.  Our new home literally had mattresses on the floor, an old cedar bed set in the spare room, an outdated stereo that belonged to his parents, a hand-me-down computer, and a Christmas tree.  We both worked hard and tried to make wise decisions with our money.  I finished college and worked full time five years until I had Avery.  Phillip went back to school and made a career change simply so that he could have a steady income and insurance and I'd be able to stay home with the kids.  We never bought flashy cars or took big vacations.  We lived within, and most of the time, below our means, remodeling horrifying-ly dirty foreclosed houses and made them our homes so that we could build equity in each one.  The Lord has blessed us, and we have met some of our goals...others have been modified along the way.  Now it seems like all of these "wise" choices are backfiring on us, as we're coming to understand the realities of government and healthcare. 

We've had to tighten our belt over the last couple of years as I have quit working, and only teach occasionally part-time.  Phillip's job, like many others, has changed leaving him with lower pay, fewer hours, higher insurance premiums and deductibles, leading to a much smaller take-home pay.  I'm not complaining.  His work has been so flexible with him dealing with Avery's health issues, and we have had to make do  like many other Americans, cut out the extras, and we live a comfortable life because we thankfully avoided accumulating mountains of debt over the years.  Yeah, I shop off of clearance racks and second-hand stores, I drive a minivan, and Phillip has an older model truck.  But seriously, I'm happy to do it!

The problem is that Avery's medical care isn't like the normal person who may have a health issue a couple of times a year that requires medical attention or even hospitalization.  Those kinds of things can be dealt with.  A co-pay on one or two monthly medications isn't unreasonable.  However, Avery takes at least seven monthly medications (down from about 15), he is fed strictly by g-tube, and each can of formula is $43, his leg braces that he outgrows yearly cost a couple thousand dollars, his wheelchair we picked was cheap at $2500, his walker is about $3500, he has eye surgeries nearly monthly, blood work regularly that sometimes leads to expensive infusions depending on his counts, not to mention the weekly therapy sessions.  When our primary insurance only wants to pay 80% (sometimes less) for expensive medical equipment, and we have high deductibles and co pays in different categories, medical bills could pile up quickly.  I have to say we have been SO blessed with insurance coverage in the last year or two.  But Avery's health care is going to be a life-long issue, and our "wise" choices in the past are backfiring on us now.  We've been denied disability for Avery because of our assets.  (We don't have that much, but the limit is $2000 total, including housing/cars/bank accounts).  We've considered giving up our home, renting, and re-allocating our other assets, but giving up what we've worked so hard to have seems really wrong.

The good news is that yesterday I spoke to someone through the Board of Developmental Disabilities giving me an update on our Medicaid Waiver that we applied for a year ago.  We've been on a waiting list that is about 2-3 years long.  We were moved up based on Avery's need priority from number 1200 to number 21, and yesterday we were assigned a case worker.  A waiver for Avery would mean that he would have medicaid insurance that isn't income based or based on his parents' assets.  It would also allow him to have some nursing care/respite care at home so that if I wanted to go to the grocery store during the day when Phillip is at work, I might actually be able to do that.  This would be a HUGE relief for us because we've felt very trapped recently trying to hold onto as much insurance coverage for Avery as we can.  The downside is that these waivers are state based, and we have prayed about and considered moving to a different state.  If we chose to do that, it would be completely on faith, because we would have to start all over waiting who-knows-how many years to get Avery specialized insurance, and in that amount of time, we could be forced to live in a cardboard box.  Not really :-), but you get the point!

So that's what's been on my mind today...and actually a lot of days recently.  We want to be able to go wherever God wants us and do whatever God wants us to do.  I've teased Phillip that I'm ready for my mudhut in Africa now, but seriously, we're that willing.  But as you can see, we also feel very torn between trying to be smart and keep our son near his medical providers and in a place where his medical care can be paid for and having faith that God will provide.  If you think of us, pray that God will lead us.  As I mentioned, it seems like there are some doors creaking open that I never anticipated, and we want to make the right decisions.

I've learned that children with special needs are an incredibly under-represented group in many ways.  The more I learn about how our system works, the more frustrated I get.  I'm trying hard as a mom to be an advocate for my son and make his voice heard.  It's definitely a battle, but he's so worth it! 

Bethany

Holi-Daze

While Christmas is my most favorite time of the year, I'm glad it eventually ends.  All the fun just wears me out!

There's the build up to December 25th with all the shopping, wrapping, and special Christmas events like plays, lights, and such.  And then the day arrives with all of its fun festivities.  Here's what our Christmas morning looked like.

Then we spent the afternoon at Phillip's sisters house, which involved more presents and way too much eating.  Then it was an evening at my grandparents house with my parents.  By the time we made it home, we were exhausted and my house literally looked like a tornado had gone through it with all the clutter from gift opening and all the new toys.

My sister Rebecca flew in from Alabama on Christmas night with my little niece, Ava.  We spent the next day catching up on months worth of visiting and packing for our trip to Indiana.  The following day, we headed to Indiana for the Lakes family's version of Christmas, which included picking up Brandon from the Indianapolis airport, eating at a Japanese restaurant, and then plunging through 8 inches of snow to a cabin in Nashville, Indiana.  We had a ball there!  The kids and adults played in the snow, building an impressive snow man and throwing a few snow balls.  We ate.  Then we took turns getting in the hot tub.  We ate.  Then we lit a big fire in the fire place and thawed out.  We ate.  Then we pretended like we knew how to play pool on the billiard table (pretended being the key word).  We ate some more. 

 Several pounds heavier, we left the cabin for mom and dad's house, since the next day was Sunday.  We all went to church together at Tunnel Hill, and we did something that was LONG overdue...had Miss Em dedicated.  Yes, I realize that 17 months is a little old for the typical dedication, but we didn't get it done in the two months we had prior to Avery's transplant, then the year after that was out of the question if we wanted him to participate (which I did).  Since our family was actually all going to be in church together, it was a good opportunity to go ahead and do it.  She was much more wiggly than a newborn would have been, but she did pretty well.

By the time we headed home that evening from Indiana, we were almost dead on our feet.  Unfortunately, I had to drop Phillip off at the ER once we got into Dayton because he was having serious pain in his leg around an incision from a recent minor surgical procedure.  He was diagnosed with cellulitis and put on antibiotics...unfortunately again for us, they were the wrong antibiotics, and two days later the minor infection had turned into a pretty serious staph infection.  Phillip spent his first two days of 2013 in the hospital and has been off of work since.  He is recovering and should be cleared to return to work tomorrow.  This certainly wasn't how I had hoped to kick off 2013, but we've kind of learned to just roll with the punches. 

I think we've finally recovered from all the excitement of the holiday season and my house is returning to its normal state of affairs FINALLY as well.  We're not making any major new year's resolutions this year, but we're just hoping and praying that while last year was focused on Avery's health, this year we can re-focus on living closer to God and finding his direction for us.

And that just about wraps up our 2012 excitement.  Happy new year, friends!
Bethany