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.