It's Beginning to Look a Lot Like Christmas!

Today is day one of Bryson's Christmas break from school.  Grace spent the night with him last night, and they were up by 8:00 playing.  She went home, but now all three of my babies are playing in the boys' room together.  I can hear all kinds of thumps and bumps coming from the room above me and Avery's happy noises. 

I was up as soon as I heard the kids moving around, and have already gotten beds stripped and in the washer/dryer, house straightened up as much as it's going to get today, spent a little alone time with the Lord, and have a couple of recipes laying on my counter for Bryson and I to bake later.  For now, everyone is healthy and content, and I couldn't ask for more.

There's a light blanket of snow on the ground, and despite the fact that it seems a few more lights go out on my Christmas tree each day, it's beginning to look like Christmas!  I'm getting excited about the upcoming festivities of the week. 

Thank you, Jesus, for blessing me beyond what I could ever deserve!

Now, let the merriment begin...

Let There Be Peace on Earth...

It's halfway through December, and I have yet to post once.  I won't bore you with all the gory details, but if you read my previous post, then you know we were battling sickness around here.  Well, Avery and Em did slowly improve, and just when I was pretty sure we were out of the woods, Bryson started with fever and flu-like symptoms.  As he was getting his strength back, Em's fever came back, so I took her to our pediatrician, who put her on antibiotics since she's been sick so long.  At the same time, Avery was in Lexington at the University of Kentucky Hospital with his daddy having a second glaucoma surgery.  They returned home, and the very next day, I came down with a fever.  That was four days ago, and I've had fever, headache, body aches, fatigue, and a throat that feels like it's on fire.  Yesterday, my doctor gave me an antibiotic shot and a prescription, and today, I'm feeling slightly more human.  Dare I even hope to think that we're getting over this awful sickness around here?  And yet, I can't help but be thankful that even in our sicknesses, God has been merciful.  It has been spaced out so that at least when I was sick, my little ones weren't and it just happened to be my husband's weekend off work and the day after I taught my last class for the term.

In between caring for sick children, I've managed to sneak out twice for some Christmas shopping.  I have done much of it online since it is much less hassle.  When I came home from my shopping, I told Phillip that I was kind of disappointed and frustrated with how CRAZY everyone and every place is this time of year.  Isn't this season supposed to be about peace, joy, and love?  Seriously, the aisles at Toys R Us looked like they'd been ransacked, and I somehow kept ending up in the same area as an older couple shopping apparently for their grandchildren.  Their cart was heaped and nearly overflowing, and they bickered the entire time.  Each time I'd see them, they were arguing about what to get, what to put back, how many to buy...

And then all of a sudden, all of my petty concerns about my holiday plans were shaken when those 26 people were so senselessly killed a few days ago.  I have cried and cried just thinking about those precious children and their families.  As a human being, as a mother of a kindergartener, as a former public school teacher who practiced all the lockdown drills in case of the unthinkable, it has affected me on so many levels as it has people everywhere.  I can't help but think that this particular time of year has to make it even so much more difficult for the families.  I'm sure there were presents wrapped under trees with the names of these babies on them.   

I've spent a lot of time in children's hospitals over the last several years.  I've watched as teams of doctors and other health care professionals have gone to extreme measures to save lives of children or at least improve the quality of life they experience for them and their families.  So much time, money, effort, and scientific research is dedicated to saving the life of just one child, and then to see 20 perfectly healthy children with bright futures have their lives ended so violently and senselessly seems to be just too hard to comprehend.

I laid in bed last night and thought about how dark our world seems right now.  But then I started thinking about when Jesus was born.  When He came, the world was plagued with violence and fear too.  After all, didn't King Herod order the death of innocent little babies in order to protect his throne?  Jesus was born into this sinful, fallen world to offer us hope and peace despite all of the hopelessness and fear we're surrounded by.  My heart will continue to be heavy for those families who are suffering right now.  I don't even pretend to have answers to all of the questions surrounding these events, but I do know that the only peace I have experienced has come through Jesus. 

Praying for peace and comfort this season,
Bethany

 

Black Death

A bit dramatic for a title, you say?  I can think of no more appropriate name for the particular germ my babies have been dealing with for the last few days...which feels more like weeks.  Yes, I know I shouldn't complain, but seriously, this has been quite a difficult few days.

Monday evening, I noticed Em felt a little warm.  I wasn't too concerned because she has been working on some new teeth, and I just figured they might be bothering her.  The next morning, Avery vomited his tube feed.  Again, not a terribly unusual occurence.  Sometimes his feeds just don't agree with him.  But after the second and third vomiting experience, (literally as I was pouring the formula into the syringe connected to his g-tube, he was puking and filling his diaper at the same time) I got a little worried.  I noticed he had a low grade fever too, and with him, any fever means a trip to the hospital.  So, I called the hem/onc clinic, and Phillip took him in for labs, cultures, fluids, and antibiotics.  Meanwhile, Em seemed to be even more uncomfortable, and her diahhrea and vomiting started too.

We spent Wednesday in Hem/Onc as well getting additional antibiotics and fluids just to be proactive, but Avery's cultures were clean and labs were stable, so his doctor assumed it was a virus.  He and Em just kept it coming though.  Strangely, Avery didn't act like he felt badly at all.  He would just sit up and puke and go back to watching his Barney.  He's my trooper, as always.  Em has just wondered around crying, being sick wherever she feels like it, and wanting me to hold her constantly.  That has kind of been hard when I have another sick one, a six-year-old who is pretty needy, and my laundry was piling up faster than I could wash it. 

I have spent the last several days up to my elbows in body fluids of all kinds.  I have changed diapers, clothes, and bedding constantly and given my dirty babies multiple baths throughout the day.  It seems like everyone has been getting clean clothes, long baths, and fresh bedding except for mommy.  I actually did 8 loads of laundry yesterday and still had some piled by my washer when I collapsed into bed.  Oh, the joys of being a parent!

I'm HOPING with all my heart that my kiddos are on the upswing.  Avery seemed better today, although I held his formula and put Gatorade through his g-tube instead.  Em did less vomiting today but still had lots of diapers.  I am having post-chemo flashbacks of when Avery was breaking records on how many diapers and bed changes one person could go through in an hour, but at least then, I had a hospital staff to help with the work.  It's been mostly a one-woman show around here, although Phillip has been very helpful when he has been home.

I'm thinking maybe we got a little confident in our immune systems around here, and perhaps we ventured out with Avery too soon.  We have been in two restaurants this month, a church service with no mask, and made a trip to Tennessee for Thanksgiving where we were around a lot of family.  I know we can't avoid all germs, but after the last four days, I've decided to avoid crowds with Avery and Em for the next few months if at all possible.  Avery hasn't gotten re-vaccinated yet, and Em is missing quite a few because some of them are live viruses that Avery can't be exposed to.  So if you don't see me and my crew for awhile, you'll know where we are!

Plain and simple -- Black Death.  You don't want it, and I hope if I'm going to get it, the good Lord lets my children fully recover first.  Now, I think I'll slip off to bed since my sickies are already there and try to get a few hours of sleep before Em starts crying.  Oh, I didn't mention that Em has been crying off and on all night, and last night, she puked in her bed.  Yep, it's been crazy around here.

Night, ya'll!
Bethany

Thankful

The holidays are in full swing.  Thanksgiving Day is just a few days behind me, and now I'm thinking about Christmas.  I'm one of those annoying people who tends to mesh the two holidays; I like my Christmas tree up and Christmas music on in November.  And although I didn't publicly post on FaceBook like many of my friends all of the things I'm thankful for, I sure have been counting my blessings!

I'm beyond thankful to be having a peaceful season here at home with my three children and husband all together.  Being together means so much more now since we endured such a long separation period, and I don't think I'll ever take it for granted again!  I'm so thankful that Avery is as healthy as he is.  We also have been blessed recently in several ways.  Without going into tons of details, I'll just say that God seems to be making a way for Avery to receive some medical coverage and services that we have struggled to get him due to income restrictions.  I never knew how twisted our system was before having Avery, but folks who work jobs and own homes have it much harder than people who don't when it comes to getting help for their special needs child.  However, I got a very encouraging phone call the other day, and I'm feeling very hopeful. 

Our family has also been blessed in other ways.  Our attention has been so focused on just surviving Avery's health crisis that things like ministry, finances, and plans for our future had been completely ignored.  I've been teaching a class two days a week at a local college, forcing me to put my mushy brain back into gear.  Phillip has had a lot of ministry opportunities recently, and it feels good to be able to start looking toward the future again -- to actually have options.  That not may make a lot of sense to you, but for us, we have felt very stuck, overwhelmed, and completely wrapped up with getting Avery healthy, which of course we're happy to do, but it has taken its toll in other ways.

We spent Thanksgiving Day in Tennessee with my father-in-law and his new wife, Mary.  Although our hearts still ache for those who we have lost, it's so wonderful to see how God has restored the joy in their lives and brought something good out of something so painful.  The Hoskins family has been broken and experienced a lot of grief over the last few years -- much like the Isaacs family, and it is so nice to see how our family is being blessed by having an entirely new family added to it, and strangely, they share so many common experiences that there's an understanding of what each has been coping with.  God sure knows how to heal!

Yes, I'm thankful for my home, food, clothing, and all the other material blessings I possess, but this year has been about so much more than that.  Bryson said the other day, "Mom, I sure wish Christmas was all about getting and not about giving!"  Well, we do have a bit more training, perhaps, to get Bryson more in tune with the true meaning of the season.  But after being on the receiving end last year of so many kind gestures from our friends, families, hospital staff, and Ronald McDonald House, it sure feels good to be able to give back this year!  I'm truly thankful that God has carried us through this year. 

God bless!
Bethany

The REAL Life of a Housewife

The other day, I was out running mundane errands, and my sister was riding along with me.  I generally plan them so that I can get in and out of all the places I need to go in the most efficient means possible and take advantage of the bank and pharmacy drive-thrus so that I don't have to needlessly get a bulky wheelchair out of my van for Avery and hope that Em is cooperative enough to hold my hand.  After my stops at the post office, library, bank, and CVS, we were discussing whether or not we could squeeze in an actual fun stop somewhere before Em started melting down, a sure sign that she's ready for her nap.  Throughout my urgency to get through my errands and calm my fussy baby from the driver's seat, I jokingly said to Sarah that we should have our own reality series...The Real Housewives of Ohio.  But I'm sure the ratings would be basically non-existent, which is why those show producers choose beautiful (or at least surgically modified), wealthy women with nannies and hot tempers. 

For some reason, there seems to be a fascination with "housewives."  I've seen brief clips (I would never waste my time actually watching the stuff), interviews, and magazine covers of the "Real Housewives" from cities all over the U.S., and I can't help but scoff at them.  The word "Real" shouldn't be anywhere in the title, unless I'm totally out of touch and living on another planet, that is, 'cause my life as a housewife isn't anywhere nearly as glamorous and dramatic.

But what does a real housewife do?  Hmmm...well, at least I generally start my day by climbing out of bed about ten minutes before it's time to wake my six-year-old for Kindergarten.  I'm always tired because Phillip and I stay up too late just to have a little adult conversation, and unfortunately, my 15-month-old hasn't gotten the memo that she's supposed to be sleeping through the night by this point in her life, and I have a hard time going back to sleep after I've been woken.  I always scramble around to straighten up and get Avery's meds drawn up before he and Emerson get up or I have a hard time keeping up at that point.  Then the tube feeding, the diapers, the chasing an active toddler around, the preparations for dinner, the mountains of laundry, the house work that is unending, and at some point, I make the big decision of whether or not I should bother getting dressed.  And those are the days I'm home.  The days Avery has doctor's appointments or I have errands to run and groceries to buy get even more complicated with the packing of bags, Barney dvds to pass the time, loading and unloading the ole' minivan...glamorous, huh??

Yeah, although my life is not the stuff reality shows are made of, I am blessed to be able to stay home with my kiddos.  Despite the fact that my closet is filled with clothes that might have been in style a few years ago and the fact that my kids keep me so busy, it's mine, and I love it!  Yes, I get slightly annoyed by the "You've got your hands full" comments and the raised eyebrows when I venture out with my "spirited" crew or have to spend time sitting in a waiting room.  Yes, my hands are full, but so is my heart!  These three little people bring such joy and such love...along with everything else.  That's something that those TV housewives probably don't know so much about!!

On that note, this housewife better get moving before the little ones beat me to it!
Bethany

And Now it's November...

It's a new month, and although we're only a few days into it, it's been fairly eventful around the Hoskins' house!

We started it off by Avery having emergency eye surgery on November 1st.  The previous day, I took him in for a check up at the retinal specialist in Cincinnati.  A pressure check in the office showed that his pressure was extremely high (54), and left untreated he would be at risk of vision damage or loss.  Since no one nearby seems to feel comfortable operating on Avery's eyes, we were sent to University of Kentucky Hospital in Lexington to a specialist there who placed a new drainage system in Avery's right eye.  It's very technical, but essentially, he now  has a plate in the back of his eye and a tube inside the back of his eye that allows fluid to drain and relieve the eye pressure.  It will take several weeks for the stitches to heal and the drain to fully function, and Avery is being reassessed weekly to see if he is going to require an additional tube to control the pressure.  As always, Avery went through the surgery like a champ.  I always worry when my baby has to undergo any kind of procedure, and especially after the surgeon told us before surgery all of the risks, which included a collapsing eyeball from removing too much fluid and severe eye infection or nerve damage leading to total loss of the eyeball.  Ugh.  That doctor didn't seem to think that Avery's right eye is going to be able to see much, with his history of retinal detachment and now glaucoma, and also told us that this is going to be a lifelong battle we're going to deal with.  That breaks my heart because I feel like Avery has so little that he is able to do, and seeing is something that is really important.  But Avery is feeling pretty good, and despite a bloody, swollen eye, he seems like he is handling it all well.

Before surgery

Emerson likes to help take care of her big bro.  Here she's trying to put his eye patch back on.  She doesn't quite have it in the right spot!

Another first, this one a positive one, was Bryson's first hunting experience.  Phillip has taken Bryson out in the woods before, but this was the first time with guns involved.  They got up before dawn and went out to my grandpa's farm to squirrel hunt.  Bryson was so excited!  It was freezing cold, and Phillip said Bryson's feet were like ice cubes.  They were only out an hour or two, and they didn't catch anything.  But Bryson's eyes were wide as he told me how he saw some deer and "smelled squirrels," whatever that means.  I had to laugh when Phillip told me disappointedly that Bryson isn't much of a hunter.  He said Bryson said, "Let's lean against this tree and watch the sunrise, Daddy.  Oh, did you bring those bananas so I can have a snack?"  I think Bryson thought he was on a picnic, not a hunt, which is probably my fault.  He enjoyed it so much, though, that I'm sure with more practice and maturity, he may turn out to be the hunter that would make his daddy proud!

The hunter

Here he is prepping for the big hunt the night before.

Now that it's officially November, I'm itching to get into the holiday season.  Last year, I didn't get to decorate for Christmas besides a tiny little tree in our Ronald McDonald House room, and I purposely listened to talk radio or Pandora to avoid the Christmas music.  It made me sad to hear it and not be able to enjoy it.  I did ALL of the little bit of shopping I did online.  Basically, we ignored Thanksgiving and Christmas, and did the bare minimum for Bryson's sake.

I don't really care so much about the presents part...sure, we'll get our kids a few things, but really, Avery and Emerson would be just as satisfied with a box of paper than anything.  But I am so looking forward to enjoying my family being home together, planning family gatherings, listening to the music, hanging a few decorations, and celebrating my favorite time of year.  So with a tiny bit of arm twisting on my scrooge-like husband, I'm hoping to get started early this year, and by early I mean this weekend!  More than ever, we have so much to be thankful for, and it seems so appropriate that we make the most of this year.

On that note, I think I'll end this rambling post.  Until next time...
Bethany

Happy Cell Day, Avery!

What I'm feeling today can be summed up in one word: thankful. Not just a little thankful though, deeply grateful from the bottom of my heart to my wonderful God, to the amazing medical team at Cincinnati Children's Hospital, and to the donor who gave a little part of himself to my Avery on this very day one year ago.

Prior to transplant and for a couple of months following the transplant, Avery was transfused with platelets about every 7-9 days and with red cells about every 2 weeks. He would go from having a platelet count of around 200k post transfusion to a single digit count about a week later. He was covered in bruises and ptekai. He would get red cells when his hemoglobin dropped below 7, although at times it was much lower.

Not to bore you with all the details, but the weeks following the transplant were Avery's worst. The weeks of chemo finally caught up with him about the same time his body was invaded with new stem cells that were trying to replace his. His body put up a fight, and he was so pitiful as he rocked back and forth in pain despite his pain pump night after night. The vomiting and diahrrea were out of control, and even the tube feeds had to be stopped and replaced with TPN through his central line for a few months to give his gi tract time to heal. His kidneys and liver were hit very hard, and his immune system had to be repressed to allow the new cells to graft without being attacked. He developed rashes all over his body, mucousitis (sores inside the mouth and throughout the gi tract), graft vs. host disease in his mouth and throat, thrush, spinal/lumbar fractures, and a variety of other symptoms that go along with the treatments used during the process.

While Avery may seem fragile, and he is in some ways, let me tell you, he has fought through some dark, dark days and endured pain that would make most folks just give up. This day will always be the day we remember that Avery got his second chance on life and his brand new cells!  It also marks the time we've waited for when the worst is behind us and Avery's recovery period is nearly complete.

Happy cell day to the bravest little boy I know, Avery!

My boys and I on Avery's transplant day.  Bryson got special permission to come for the event.

Avery watching his Barney while he is receiving his new cells.  He thought the whole thing was a little boring. :-)

Avery's new bone marrow!