The month of June has come and gone (almost) already.  Crazy how quickly summer months seem to fly in comparison to the dreary winter days!  Our month so far has been so full!  Bryson went to Indiana the day he got out of school and spent the week with my parents, attending Sady Springs Youth Camp.  Our plan was to drive over Thursday morning and spend the weekend, but plans changed.  

My brother-in-law, Brandon James, had a 22-year-old brother who was killed in a car accident on that Wednesday night.  We ended up going to Aabama for a week instead of Indiana.  It was such a tragedy, and I don't think I've witnessed anyone grieve so deeply as the James family was and has been.  An event like that brings everything in perspective in a powerful way.  Things that seem so important suddenly lose their significance.  I have felt a deeper need to pray and ready myself for eternity and also to make sure I'm preparing my children.  Life is truly so short, and tomorrow is not a guarantee.

One bright moment that I don't believe I'll ever forget occurred the day of the funeral.  The grave side service was over, and folks had walked next door to the fellowship hall where a meal was prepared.  Brandon and Bryan's mom, Brenda, went into the church and sat down in a recliner.  She was crying, mumbling, and her eyes were closed.  Her sisters were gathered around her.  I had gone into the church with my kids instead of the fellowship hall because of the heat and the crowds.  I felt a little bit like an intruder when Brenda came in, although the family assured me we were fine.  Before I could gather my things to leave, Phillip picked up Avery and took him over to Brenda.  He spoke to her and she opened her eyes.  When she saw Avery, her eyes lit up a little.  She has always loved kids, but she has prayed a lot of prayers for Avery over the last few years.  As Avery watched her talk to him, he started to giggle in the way that only he can do.  The light in her eyes grew, and she started to smile and clap her hands and sing a little song.  Avery laughed even harder.  Brenda said, "I never thought I'd laugh again, and here I am doing it.  My heart hasn't felt like this in days."  They continued to play together for several minutes until Phillip took Avery away. At that point, Brenda seemed to have gained some strength. 

As I sat and watched their interaction, I thought about how inappropriate it would be for just about anyone else to be giggling and clapping in such a situation.  But Avery doesn't know sadness or grief.  He does know joy though. I couldn't help but tear up as I watched Avery bring joy to someone who was hurting in the worst way.  She kept saying, "You're such a miracle!" and "I've prayed so many prayers for you!"  His joy spread to her, and she received strength in the process.  At that moment, I was so thankful for my little Avery and the things he CAN''T do, and the one thing he CAN do so well: bring joy. 

We're home and gearing up for more travels. I'll update as time allows!

Good News/Bad News

Like many days, weeks, and months, this week has had it's ups and downs.  A couple weeks ago, Avery went in for a BMT follow up, which included immune studies.  Our doctor said Avery was looking great, gave us the green light to begin re-vaccination, approved outpatient therapy instead of home based, and basically told us we could re-enter the world with caution.  We attended church this past Sunday and family Memorial Day picnic on Monday.  Tuesday, the Care Manager from Cincy called and confirmed that Avery's immune studies looked great.  There were a few things not as good as they would like, but mostly it was good news.

Fast forward 24 hours and Avery decided to prove to us that he will do things his own way by spiking a fever.  When it hit 103, I called the doctor who sent us to the ER.  He was admitted to hem/onc.  Yesterday, his fever was up and down, and then during the evening, he had a couple seizures.  He was still febrile through the night, so we're staying at least one more night. He seems to be feeling MUCH better today. 

Kind of ironic that just when we start feeling confident in his ability to handle germs a little bit, he gets sick.  Such is life with Avery; things rarely make sense or work out like they should.  So maybe we'll just slow down and give him a little more time. 

More good news though is that today I signed the last of the paperwork for Avery's Medicaid waiver. Now everything goes to the state, and we just have to wait for them to approve.  This will allow him to carry his own Medicaid/disability secondary insurance as well as allow for in home nursing care.  What an exhausting process, but the end is finally in sight! Also, we had his IEP meeting this week and got all the paperwork ready for him to begin Kindergarten on the fall!

Love my boy and glad he's feeling good right now.

Bethany

Cleaning out Corners

Lately, we've done some rearranging here in the Hoskins house.  Our home is a formerly bank owned property that we bought cheaply, completely gutted, and then added our own touches and finishes.  Used to, when you walked in my front door, I had a large great room that was the size of two rooms, but we used it as our living area.  In the back of our house, there was a room we used as our formal dining area.  I grew tired of walking into my house and the first thing I'd see was our mess...scattered toys, Avery's walker, etc.  So, with some muscle from my husband, we changed our great room into a front living area and a dining room in the back half.  The old dining room we turned into a family room where I could move the toy basket, Avery's new positioning chair, our monitor and computer, our love seat and an old comfy recliner.  

I like to think of myself as a good housekeeper. If you ask my husband, he would say I'm close to obsessed with housework because I'm always doing it.  I disagree about the obsession, but I don't like to let it pile up and then attack; I prefer to keep things as tidy as I can as we go.  With 3 kids, that's a challenge!  But as we began moving our furniture, I told Phillip that what we uncovered made me feel a little bad about all that cleaning I do.  There were dust balls all along the walls, a cobweb or two, and random items that I had forgotten about that had been misplaced or hidden.  

I don't want to make too much of it, but I couldn't help but think of the spiritual application here. I can't speak for you, so I'll just speak for myself.  I like to think of myself as a clean living person, keeping myself pure in a sinful, dirty world.  But with a little closer inspection, I'm pretty sure there's some corners in my heart that I've neglected, some sins of omission I'm guilty of, and some clutter that needs disposed of properly.  Just like my house, it's often what others see that I focus on.  If the exterior is clean, most assume the rest is okay too.  While I believe the exterior is meant to be clean as well, I don't want to become one of those "whited sepulchers" that the Bible speaks about.

              ²⁷ Woe unto you, scribes and Pharisees, hypocrites! for ye are like unto whited sepulchres,        which indeed appear beautiful outward, but are within full of dead men's bones, and of all uncleanness.  Matthew 23:27

Every once in a while, I have to examine my heart closely and do some rearranging in there.  After all, that's where I really can't afford to let the dust creep in.

Family Portraits

I feel like these photos should come with some kind of disclaimer stating how they don't accurately reflect my stress level.  Actually, the photo shoot itself wasn't too bad...Sure, Em wanted to run off rather than stand where she was supposed to, Avery would rather clap and suck his fingers, and Bryson started with all kinds of strange smiles and poses and then quickly moved to the, "Can we be done already?" phase.  The planning of our clothing and then getting everyone dressed appropriately and hoping the weather and my little's attitudes were cooperative is what stressed this Mama out.  In the end, I think the camera captured well my little family, quirks and all.  I can't say we're the most photogenic crew, but we managed to accomplish the task of having a family picture taken. 

How blessed am I??!!!

This n' That

Once again, blogging has taken a back seat to my other activities. But I did want to take a second to update about goings-on in the Hoskins' home.

I think most stay-at-home moms probably feel at times like they live in a bubble with little contact with the outside world. I would say that my life has become even more isolated than most for a couple reasons. One, we're still very careful with taking Avery out and about. His immune system is still weaker than normal, and when he gets sick, it's a challenge to deal with. Secondly, taking 3 kids anywhere is frankly very difficult, especially when it involves loading and unloading a wheel chair and then counting on your 20 month old to hold your hand and your six-year-old to follow directions. Thirdly, I'll be honest, I'm not a really social person. So my motivation to drag three kiddos on an outing is pretty low.

So my world really is my kids. These three munchkins are my "friends" in a weird way. They make me laugh and give me a reason to get up in the mornings. But they also wear me out and occasionally raise my blood pressure. :-)

Bryson has been reading so well! Of course, he sometimes uses the wrong word or stumbles over bigger words, but I'm still very proud of him. He has been learning new Bible stories and "preaching" them. Bryson probably worries me the most right now because he's growing up so quickly, and there's so many things I feel like I should be instilling in him.  It's such a mixture of pride and worry that I often feel.  The stakes are just too high on this parenting stuff, and there are no do-overs!  Like all first children, I suppose, he's our little guinea pig we have to learn on. He only has a couple weeks left as a kindergartner and then off to first grade he'll go!  Eeek!

Mr. Avery is pretty much just maintaining with small gains here and there.  Health wise, he has also been stable, and we're soon transitioning to outpatient therapy rather than home-based.  As we venture out into the world, I'm feeling happy but also a little protective.  Little germs are some of our worst enemies!  He still has his bad days, grumpy/fussy days, and low-energy days where he just wants to stay in bed all day (can't say I blame him!), but those days are thankfully not as frequent as they used to be.  In fact, we're making plans to send him to Kindergartnen in the fall.  Yes, I can hardly believe it myself.   It will be a modified schedule in a special education classroom, but it will be the official start to his educational career.  

And then we have my little princess.  Oh, what a rotten little girl she is!  She has become a serious daddy's girl, and starts saying his name pretty much as soon as she wakes up. Every time I get a phone call or text or she hears a noisy car drive by, she says, "Daddy!"  She keeps us laughing with all the faces and silly games she plays.  Since it is very likely she will be our last child, we're spoiling her a little (okay, a lot), and thoroughly enjoying her!

The days are so busy and time passes so quickly, just like so many people warned me it would.  I spend my time trying to keep up and be the best mommy I possibly can.  It's not glamorous, but it's the absolute BEST life ever.  

Turning 5

This week my little man turned five years old. What a milestone! My baby isn't so little anymore! He started off just at 2 lbs 8 oz, 14 inches long. I remember Phillip saying, "I've had sandwiches bigger than him!" But inside of that tiny bundle was the heart of a fighter!

I think our children always teach us lessons about life and love, and sometimes things like, "never judge someone else's kid 'cause someday, mine might do the same thing!" :-). But Avery has taught me a few things I never thought I needed to know...some hard lessons about trust, disappointments, giving up control, to name just a few. But mostly he's taught me about love and strength. I could say much more, but I'll leave it at that for now. Avery has stolen my heart, and I'm hoping that this year is his best yet!

Here's a few pictures of his earlier days.

Birthdays

Avery's birthday and my own are both in April. There was a time many years ago that I looked forward to my birthday, but those days are long gone. Now, I'd much rather ignore April 8th, and focus on the 14th.

Like it or not, I'm a year older as of this past Monday. I've heard people say, you're only as old as you feel." If that's true, then I'm WAY older than 32! The last few years haven't been kind to me. I have new lines on my face and bags under my eyes as proof of the sleepless nights and stressful days. Somehow, I went from 27 to 32 in the blink of an eye. I'm not sure where all the time went, but I'm doing my best to make peace with the inevitable: I'm aging quickly and there's nothing I can do to slow time down!

In an effort to focus on the positive, I've been reflecting on how blessed I am. That's not just a cliche; it's a fact. The best way I can describe it is to say that my heart is full. I have a husband who loves me and our children and works incredibly hard to provide for us. In those moments when I take a breath from chasing kids, changing diapers,and cleaning messes, I sometimes look into the eyes of the man who is my partner in life and realize how confident that makes me feel. No, "alone time" isn't really in our vocabulary right now, but we're muddling through side by side, usually with smiles and laughter, although occasionally with tears. Our three children are my greatest source of joy, contentment....and admittedly, occasionally, frustration. But sometimes I catch myself looking in the rearview mirror of my minivan and looking into the innocent faces of Bryson, Avery, and Emerson, and I'm struck with a sense of awe that they're mine. Each one is so different, but their smiles, questions, and sticky kisses are what makes my life so meaningful right now. I've gladly traded in my days of full-time teaching to share these special times with my little ones.

So, am I glad to be a year older? Nope. But would I trade my blessings for the good ole' days? Not a chance!

This is perhaps one of the most boring posts ever. Sorry about that. There's just nothing too exciting about getting older anymore. :-). Bethany

Magical Vacation

I've been off the grid for awhile now. What can I say? Sometimes I get so busy living life that I have no time left to blog about it. But, I do want to catch up on the very important events so that I can hold on to those memories forever.

We just got home night before last from our Make A Wish trip to Give Kids the World Village in Kissimmee, Florida. Just to clarify, it wasn't just a Disney trip (using "just" loosely here); it was a magical week at a 70 acre village designed just for families with kids with life threatening conditions that included the option to visit the Disney parks for free if we wanted. We arrived Thursday afternoon at the village, and we spent that evening enjoying the warm weather and nightly party held there. The night we arrived, the theme was Winter Wonderland, and the village was decorated with snowflakes and all things Christmas. Christmas music was playing over the speakers, little tents with crafts and activities for the kids were set up all along the avenue, and Santa was also there with a toy for each child. We were completely blown away by the effort the volunteers and workers at GKTW went to to make the night special. We quickly realized that they did everything with the same level of extravagance and generosity.

The next day, we didn't leave the village. We thought we would, but our kids were exhausted from the big day of travel and excitement, so we let them sleep in. We spent our morning at the giant Candyland playground. Like everything else at the village, it was amazing and had a story attached to it. Apparently, years ago a family visited GKTW, and soon after their son passed. His favorite game was Candyland, so the family donated "Matthew's Boundless Playland" to the village. It is actually a life sized game board where they hold weekly games. It's also fully handicapped accessible, so there were swings that Avery could swing on and a wheelchair ramp going above the climbers and all around the play area. We spent the early afternoon at the zero entry, heated pool, which my kids loved! Avery splashed and giggled. Then there were the rides on the Enchanted Carousel, activities in he Castle of Miracles, evening party, which was pirates and princess themed. Oh, and I can't leave out the food, which was delicious and always available, and the ice cream palace that served ice cream from 7:30 am to 9:00 pm, as much and as many kinds as one could possibly want. I admit, I ate ice cream every day! My kids and husband had it more than once almost every day!

SeaWorld was our first park outing. Bryson was amazed by the whales! If you know him at all, you understand why. We enjoyed the walrus and otter show and especially the dolphin show. The weather was perfect, and we got back to the village with sunburns and sore feet, and after a brief break in our villa, we headed out for the evening festivities.

We did visit Magic Kingdom. We loved the parade and the Show in front of the palace. With our Make A Wish buttons, we were fast passed in every line and taken aside for photos with the characters. Avery loved the characters! At one point, he had ahold of Goofy's hand and wouldn't let go. It was precious! Em was terrified of them all, so we had to hold her the whole time. While we enjoyed our time at the Magic Kingdom, we were all ready to get back to our village. Yes, you've probably figured it out by now that there was another big party, more fun, games, food, ice cream and characters.

And I can't leave out the Gift Fairies! Each day while we were out of our villa, the fairies would come and leave gifts for the kids on our table. Really nice gifts too! Needless to say, we brought home MUCH more than what we took with us!

We required another day off from parks on Monday. Yes, they were fun, but with small kids, it is pretty exhausting as well. Not to mention there were so many things we wanted to do at the village. So Monday was another pool day and party evening.

Tuesday, we went to Disney's Animal Kingdom, and I think we enjoyed it more than Magic Kingdom. The Kilamanjaro Safari was awesome with all kinds of animals literally feet away from our safari truck. Avery's wheelchair was able to be strapped down on the truck, and it was a fantastic view. We saw the Finding Nemo musical and The Festival of the Lion King show as well. Both were amazing. Of course, there were characters to see and a few rides as well. Like before though, we were ready to get back to the village.

We spent most of Wednesday exploring a few things at the village we hadn't had a chance to yet, like the Dino Putt Putt course and the game rooms. Our flight didn't leave until 6:30 that evening, so we had a lot of time left. We got back into Dayton around 9:00 that night, and the temperature change was shocking! Our limo was waiting for us ( oh yeah, I didn't mention that a limousine was our ride to and from the airport), and we officially said good bye to our vacation as we pulled up in from of our house.

I know I left out some things like the Magic Pillows my kids got from the Magic Pillow tree, the horse back rides my boys took, the visits from animals, school bands and choirs, trick or treat at the Halloween Party, and a bunch of other things. Let me just say, it was a vacation that we'll never be able to top!

We were surrounded by so much love and kindness while we were gone. There were a lot of kids there with all kinds of health issues and special needs, and I couldn't help but get teary a time or two as I watched these precious kids and their families enjoy themselves. At Give Kids the World, they recognize the life changer that having a sick child is for the entire family, how every decision and action is premeditated and planned around him or her and the amount of stress that goes along with the endless appointments and worries for what the future holds. They truly go above and beyond to give the Wish child and his/her family a week with no worry or limits. I told Phillip one night that if love and kindness could heal, Avery would for sure be the healthiest child alive.

If you're interested, I'd encourage you to look up Give Kids The World village (the story behind it is really amazing too), and be aware of organizations like Make A Wish, who bring hope and happiness to so many kids. I'm beyond grateful to them for what they do!

Here are some highlights of our trip!

The limo ride to the airport.

The entrance to the amazing Candyland playground, named for a former guest.

Phillip and me.

My little Avery enjoying the swing...as long as he doesn't go too high!

Em enjoying the sunshine!

My babies in the pool.

Three princesses. :-)

Whale show at SeaWorld.

Bryson and Em headed to the pool.

Fishing!

Bryson and Mickey.

Nemo show

The palace at Magic Kingdom.

Em and Mickey. She was scared of the real one.

Great view for Em!

Lion King show.

Mommy and Avery.

Gotta love Mary Poppins!

More Magic Kingdom fun!

The main man.

Em and one of her many ice cream snacks.

Travelin' On

Since my last post, I have done something I hadn't done in a really long time...traveled outside of the state of Ohio borders.  Besides quick weekend trips to Indiana to see my parents, the last year and half we have pretty much been home or in the hospital.  Before that, we were constrained by Avery's need for blood and platelet transfusions every few days, so trips were planned and short.  As 2013 began, Phillip and I vowed that if we didn't do anything else, we were going to try to get out and enjoy some things we've not been able to for a while now.

We headed to Tennessee for the last few days of January and the first few of February.  Phillip has always wanted our family to attend the Minister's Conference in Pigeon Forge, so this year, we made it happen.  We took Bryson out of school and spent about five days in Tennessee at the meeting and then at Phillip's dad's and step-mom's house.  It was both refreshing and encouraging to be around so many people that we hadn't seen in so long and hear some amazing messages.  We mixed a little fun in with a tiny bit of shopping and dining.

We got home with just enough time for me to unpack and catch up on laundry, and four days later, Avery, Emerson, and I headed even further south to Alabama with my mom for a visit with my sister, Rebecca.  It had been nearly two years since I'd been there!  It was so nice to spend that much time with Rebecca and let the kids play together.  Unfortunately, all the kids had colds, Rebecca is dealing with serious pregnancy-related nausea, and Avery spiked a fever while we were there, which all put a damper on any plans to go anywhere.  We ended up staying at the house pretty much the whole time, cooking each day, and chasing the two little princesses, Ava and Emerson.  Mom did watch the kids a couple of times for Rebecca and I to do a little shopping, and then I stayed home with kids while Mom, Rebecca, and Brandon went for an ultrasound revealing that Becca is having another girl!  We had a great time just being together, despite having sick kiddos.

So now I'm finally home...for a little while anyway.  We have Avery's Make-A-Wish trip to Florida scheduled for March 14th, so in less than a month, we'll be gone for another week. All of this traveling isn't just about catching up with friends, family, and experiences that we've missed out on recently, but it also represents a new chapter in our lives where we recognize more than ever the importance of living in the moment because you really never know what the future holds.  We're still being cautious about taking Avery around crowds, but we're enjoying the freedom to go if we wish and looking forward to making lots of memories together!

Bethany

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