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.