All I Want for Christmas...

In a world where people pepper spray unsuspecting shoppers to keep them from getting in the way of a bargain, I think it's safe to say that many have lost sight of the important things in life. I think I've been guilty as well...not of pepper-spraying, but of just getting caught up in life. This year has certainly put things back in perspective for me though.

Last night, a young girl only 3 doors down from Avery in the BMT unit lost her fight for her life. As I watched that family huddled together crying, I couldn't help but feel like crying myself and realize how much I have to be thankful for.

If all goes well, Avery is going to be discharged today to the Ronald McDonald House. He's getting a red cell transfusion as I write, and his ugly rash has been seen by 3 specialists who still have no clue what it is, but all agree it isn't GVH, THANK GOD! With his history of the last two times being discharged resulting in a quick readmission, I'm simply hoping that the third time is a charm. I'm OVERJOYED at the thought of my family being together. I'll admit...I'm nervous. Avery is pretty high maintenance these days. He's fussy, likes to be held, and requires several iv meds, oral meds, and 20 hour TPN throughout the day. Not to mention the fact that all the extra fluids means more than usual diaper changing among other things. I'm also nervous about the germs he's going to be exposed to, even though we're in isolation at the Ronald McDonald House, and you better believe I'll be taking that temp pretty often. But I just can't wait to get us all together, chaos and all.

Christmas for us is simple this year. We've been separated, and I've not done much shopping. But the gifts and decorations, although lots of fun, aren't what it's all about anyway. We have a little Charlie Brown tree with a few presents waiting, but above all, we have each other.

May we cherish the moments we have together and remember that day so long ago when Joseph and Mary were far from the comforts of home when baby Jesus was born in a lowly stable. I'm sure they were frightened and worried, but also so thankful and in awe of the precious baby they were blessed with.

It may sound cliche', but seriously, the only thing I want this year is to be able to spend time with my beautiful family, and see my little Avery enjoy the day pain-free.

I'll update you with the details of what I pray is going to be an amazing time with my family and hopefully, a turning point for Avery's health.

Love to you all on this Christmas weekend!
Bethany

My Middle-of-the-Night Prayers and Worries

Well, it's 4:30 a.m., and I should be sleeping. Instead I'm lying here worrying and praying. There are some who say that worry and faith can't co-exist. All I know is that I'm trying so hard to trust right now. But my heart is heavy thinking about my little man lying a few feet away from me. For the last hour or so my prayer has pretty much been something like this: "Lord, get us through this. Please, Lord, just get us through this." It's certainly not an eloquent prayer, just a sincere and desperate plea from a weary Mama.

Between whispered prayers, my mind turns to the question I've asked often...when will it ever end? When can I stop just surviving life and actually start living? When will I be able to look into my three precious kids' faces and just feel happy we're together, not feel the need to cram as much quality time as I can before sending them off again or feel like I'm choosing between who needs me the most at the moment. Sometimes I look at my husband, and even if we're in the same room, I feel so separated, and then the days and nights when we're apart, which is most of the time, I just miss him. Phillip and I have only actually stayed under the same roof 5 or 6 times over the last 10 weeks; Bryson has only seen Avery once in 10 weeks, and my family of five has not been all together at all during this time.

I know I sound so whiny right now. I also know that things will probably seem some better in the morning. But I'm growing impatient with this process and when my mind starts wandering like it has tonight, I feel a little overwhelmed with the journey that lies ahead.

Please pray that the skin biopsy that they're going to do today will give us an idea of what this awful rash is and how to treat it. Please pray that it's not GVH. Also, please pray that Avery will start growing stronger, the fevers will stay away, and that he'll star to eat a little. It would mean so much to start seeing some improvement and be able to have my family together some. I'm so thankful for those of you who pray for us.

--Bethany

Update

I know, I know -- incredibly boring title. Sorry, friends. I'm fresh out of anything creative or interesting.

For those of you who read this blog simply to keep up on Avery's progress, I'll not keep you in suspense. He is still in the hospital. Last time I posted, he had been readmitted only 12 hours after his discharge. After four days in the hospital, he was once again discharged. Phillip, Emerson, Avery, and I had almost 48 more hours before he once again spiked a fever, and Phillip made another midnight trip to the ER, where he was immediately admitted. That has been nearly a week ago. We're hoping that perhaps tomorrow he will be discharged once again. His temp was borderline this evening (it's not really considered a fever until 100.4...he was like 99.9), so I'm sure hoping and praying that he doesn't heat up. As far as an explanation for the fevers, the best we can figure is that his immune system is still so weak and being suppressed with anti-rejection drugs that any bug at all is causing him to run a fever. His blood counts have been a little lower than they had been, but that could be caused by whatever bug he is fighting. He also has a nasty rash that seems to be getting worse. It almost looks like chicken pox, but it isn't, but it's that kind of blister-y rash. And one of my most worrisome concerns is that he will NOT eat at all. The docs think that his esophagus has closed up again, but since his counts are too low to do a dilatation without putting him at risk for infection, it's just going to have to stay that way for awhile. They placed a new nj tube today to try to keep it open and help with oral meds. I'm just so worried that he's not going to eat again. You just have no idea how much effort we have put into getting him to eat as well as he was prior to BMT. I really hope that he is able to find his way back to where he was.

As you might imagine, life has been just crazy for us. My stress level seems to be almost as high as I possibly think it could be...and then it seems something happens to just increase it. I don't know how many times people have told me how strong that I am, and how they don't know how I do it. Honestly, I'm not strong, and I don't know how I do it either. But I do know that when I am weak, He is strong. Surely God is providing the grace to get through one day at a time because I just don't have the strength on my own.

I'm sure some have quit reading by now...I can't say I blame anyone. My blogs have got to be the most boring and depressing thing to read. Unfortunately, there aren't a lot of bright spots right now to focus on, but I'm hoping that that turns around soon.

Just when I think I've got it bad, I'm reminded of so many others who are hurting and facing their own trials. The other night in line for dinner at the Ronald McDonald House, a new mom standing behind me was talking about her one-week old baby who had almost died the night before. She said that they were giving the baby just a couple of hours to turn around, otherwise they were going to start comfort care. I see other kids come and go from the BMT unit, little bald heads and green masks just like my Avery, and I know that I'm not the only one hurting. There are hospital rooms filled with kids who are literally fighting for their lives and parents who are praying for a miracle.

But, something I must remind myself often of is that God is sovereign. He saw this coming long before I did, and he has a plan. He saw our beginning, and he knows our end. It's easy to feel like life has become a series of random events, but I recently found comfort in this passage of scripture.
Psalms 37: 23-26 The steps of a good man are ordered by the Lord, and he delighteth in his way. Though he fall, he shall not be utterly cast down, for the Lord upholdeth him with His hand. I have been young and am now old, yet I have not seen the righteous forsaken nor his seed begging bread. He is ever merciful and lendeth and his seed is blessed.

Not only does God see where I am, but he is ordering my steps. I'm so thankful for that!

Tonight we had a small Christmas get-together with my parents and Sarah and Rodney. It was strange with so many missing: Rebecca, Brandon, Ava, Phillip, Avery, and my grandparents. But, we wanted to do it for the kids more than anything. In the morning, the kids and I are heading down to Cincinnati. Since Bryson is out of school on break, we'll probably stay there for a couple of weeks.

This year, I'm not doing Christmas cards. I'm running short on time and Christmas cheer, but I want all of you to know that I'm thankful for each one of you. If anything, this year Phillip and I have learned what an amazing group of friends we have. We wish you all a Merry Christmas!!

Back in the Hospital

So it was 8 weeks ago Dec. 8th exactly that we walked into the Bone Marrow Unit with so many emotions it would be impossible to describe. 8 weeks later we finally walked out those front doors and loaded all of our belongings and Avery into our van. I don't think I've ever been so glad to leave somewhere, and Avery looked around and smiled as we pulled out. The evening kind of went downhill from there. The home health nurse arrived to help us hook up his night iv meds and TPN. Avery wouldn't eat anything and wasn't acting like he felt great, so we turned in a little early. Around 1:30 a.m., he had some belly issues that required both Phillip and I to change him and strip the bed. I thought he felt a little warm, so I took his temp. I took it 5 times to be sure, and yes, he was running a fever. A phone call to the BMT doctor on call confirmed our fears; he had to go back to the hospital. So we made it outside of the hospital for a whole 12 hours!

He's back in the hospital with a fever going up and down and clearly uncomfortable. He's refusing to eat although he's got to be hungry. His little belly is just growling away. I think he knows if he eats, it's going to make him sick. He's just been curled up in a ball in his bed or sleeping as we rock him for the last two days.

I went home last night and got Bryson, so he and Emerson are staying here at the Ronald McDonald House, and Phillip and I are trading out with Avery. The plan was for us all to be together this weekend, and Bryson was so looking forward to that. It was the first thing out of his mouth the last few days, "Is today the day Avery gets out of the hospital?"

Right now, I'm just feeling really worried and stressed. I'm obviously worried about Avery. I feel like my happy little boy has been gone for so long, and I worry that he's not going to ever be the same. We worked so hard for a year and a half in feeding therapy, and I think we've just thrown all of that hard work out the window. He's just weak and lethargic, and I need him to start getting better. That sounds strange, I know. He probably wants to feel better more than anything, but I feel like I need it almost as badly. But I'm also worried about Bryson. Although I've had great support from my family and friends, and my sister has been keeping him a lot, I just feel like he has gotten neglected through all of this. That's one of the reasons I went home last night to get him. I just want him to know that we're all still a family. So after a lot of worrying, I think I"m going to meet my mom and send him to Indiana for a few days. He's going to have to miss school, but I know while he's there, he's the center of attention, he's not being exposed to germs like he is at school, and he has to behave.

My mind is just running in a lot of paths right now that I don't want it to. This post is probably full of grammatical errors and awkward sentences that I wouldn't otherwise use, but I am definitely a little stressed right now and pressed for time. Please keep my Avery in your prayers. This road has turned into a longer and more difficult one that I think either Phillip or I ever imagined. I knew it would be tough, but until you're here, there's just no way to comprehend it.

Thanks so much for your prayers. We're hanging on to every one of them!

Bethany

And the Journey Continues...

The past couple of weeks have continued to be quite an adventure, although calling it an adventure sounds too glamorous. I'm not sure what to call it exactly. Most days, I don't know whether I'm coming or going, whether I should be happy or sad, and what day of the week it even is.

We're now at day 38 post transplant and entering week 8 in the hospital. So far, Avery's blood counts are pretty stable...low, but stable. He has needed two red cell transfusions since his transplant but no platelet transfusions, which is pretty amazing! All of his labs are showing that the new cells have engrafted and that the cells being produced are still 100% donor cells. He had about a two week period with a high viral count (adeno virus), but at one point last week, that count was zero. It is back but much lower than it was. His biggest issue right now is eating and digesting food properly. The transplant process itself is hard on the digestive tract since the chemo destroys the lining of the intestine, and it takes some time for it to heal and get back to normal. Transplant patients also complain of changes in their tastes and their appetite. So when you take a kid like Avery who has been a reluctant eater all of his life, struggles with oral aversions, and has an esophageal stricture inhibiting swallowing, the normal eating issues become much worse. There are days when we even show him a bottle that he starts gagging or vomits. We have to be a little pushy with food but not so pushy that he gets sick. Of course, some days, his tummy issues result in a ridiculous amount of diaper changing as well. One day in particular I felt like I had been participating in an athletic event after I lifted him out of bed, wrestled him to change and clean him, put the proper barrier cream on his skin, rediapered him, changed his bed, and lifted him back in bed only to have to repeat the process 15-20 minutes later. One day he ruined all of my clothes, and I actually had to wear scrubs for awhile until I was able to get my clothes washed. The doctors have said that kids with DKC1 tend to take a little longer to heal. The tube feeds have been stopped completely since they were literally going straight through him. He's now getting TPN (total parenteral nutrition) through his central line. It's not the preferred method, but it works best for him. About a week ago, I got him to eat applesauce for the first time in weeks. I was so thrilled, and with each bite, I found myself saying, "Thank you, Jesus." His eating has been hit and miss depending on how he's feeling, and definitely below normal, but I'm glad that he's at least beginning to eat some.

He's off the pain pump and doing pain meds PRN now. He has been pretty grumpy and uncomfortable for the last few days, and then last night started with a low grade fever. He also has a rash that comes and goes, but the skin biopsy came back negative for Graft vs. Host disease, which is a common cause of rash in BMT patients. Despite his bad days, I am so thankful for his progress so far. A few days ago, a little 2 1/2 year old girl passed away following complications from her BMT. She had Diamond Blackfan Anemia, which is the same diagnosis Avery was given at 1 (which has since changed to Dyskeratosis Congenita). She developed Graft vs. Host in her liver and also had a severe adeno virus. This all has struck just too close to home, and my heart just aches for the grieving family.

Last week the team of doctors started talking about a discharge plan for the first time. They said possibly this Tuesday we could be moved across the street to the Ronald McDonald House, so we started the home health education on running his TPN and giving him his meds. I'm really not good with all of that; I prefer to let Phillip do it, but I have to know how to do it for when he's not around. I'm looking forward to getting out of the hospital, but I'm also really nervous about it. You might think that's weird, but I've always had the security of knowing I could push the nurse call button and have someone come check him out or bring additional medication when he's uncomfortable, or the security of knowing his vitals are being taken regularly and recorded. Not to mention the fact that on his high maintenance days when the laundry from multiple bedding changes piles up, the house keeping crew will come in and take care of that. With Avery's last few days being pretty rough, I'm not sure the doctors will feel comfortable discharging him to RMH or not.

Phillip started FMLA on the first of December, and he's off the entire month. I am so glad! It makes things so much easier with him available more. His sister spent the night with Avery last night, which made it possible to spend our 3rd night in nearly 8 weeks under the same roof. It was so cute how Emerson spent so much time just staring and smiling at Phillip like, "Who is this funny man who keeps talking to me?" She has changed a lot in the last two months, and I'm not sure she quite knows who all her family consists of right now! Speaking of Emerson, here are a few snapshots of her now at 4 months old.



Emerson and Ava

Now, to switch gears just a little, last night was the "Christmas for Avery" benefit dinner that some friends and church family planned on Avery's behalf. Phillip and I were really in the dark on most of the plans, and since we haven't been able to attend church regularly, we were even more out of touch. But we were so overwhelmed last night by the event. It was beautifully decorated for Christmas, and there was great food, some donated by local restaurants, and the beef and noodles were homemade by Lydia Duane. The In One Accord girls sang Christmas songs, the little kids sang some classics, and Rodney, Jeff Ward, Andrew Blevins, and Jeff Liette did a lip sync to the Chipmunks songs. There was an auction with donated items, and Richie Sutherland did a photo booth with a holiday background complete with a sleigh and lots of snow. It was truly spectacular! Clearly, much work went into the planning for the night. Phillip and I spent a lot of time talking about how undeserving we felt, and how we didn't even have a clue how to properly say "thank you" to everyone for what was done. To be honest, the last year has been extremely challenging for us in many ways, and it means so much to know that there are so many people who love us and just want to lighten the load a little. We are so touched by every single thing that has been done for our family, and as insignificant as it sounds, we still want to say thank you!!

In case you haven't seen it already, here is a video that my sister made for Avery's benefit. I think it does a good job of capturing his resilience and strength despite his difficult times.

God bless,
Bethany

Thankful

This year, we're mostly ignoring the holiday season. If you know me, then you know that this is one of my favorite times of year. I'm one of those people who likes to blend the Thanksgiving and Christmas seasons by putting my tree up early and listening to Christmas music in November. There's not much I enjoy any better than having a nice, holiday scented candle burning, drinking hot chocolate, and planning family get-togethers. This year, I'm just not feeling too festive, and so there are no decorations or plans to put any up at the Hoskins' home, and today on Thanksgiving, my family members are scattered about rather than under one roof as I would like.

However, despite my lack of keeping up with traditions, I still have so much to be thankful for today! A lot has changed in one year; this time last year we only recently found out we had another baby on the way. Now, we have a beautiful, healthy baby girl who I just love to pieces! Last year, Avery's diagnosis and prognosis was completely different. And even though it was a tough year getting to this point, he now has new bone marrow that is starting to graft. I'm especially grateful to the young man who shared part of his healthy cells with Avery.

I've always been thankful for my husband, but each year seems to bring out something different in him that I appreciate. I feel like we have been through so much over the last few years and that our relationship has been put to the test! He has been a rock amidst chaos. Thank you, Lord, for blessing me with Phillip Douglas Hoskins!

I've been blessed with many material things, which in light of what has been going on in our life, I have realized mean so much less than I once thought. But I'm so glad that we have such a nice home...nothing fancy, but cozy and filled with love. We have plenty of food, my husband has a good, stable job, which means a lot in this economy! I'm even thankful for my not-so-cool minivan, but it is oh-so-practical and dependable! :)

I sat down a few days ago to write a thank you card to the young man who shared his healthy cells with Avery, and once I wrote "Dear Bone Marrow Donor," I was at a complete loss for words. Because of privacy laws, we're not allowed to know his name or location, and in my thank you card, I wasn't allowed to share any personal details that might compromise our or his anonymity. But I just kept thinking that simply saying, "thank you" for such a selfless, life-changing gift seemed so insignificant. I tried to express our gratitude to the young man as best as I could, but as I closed my note, I still felt like I had fallen so short. Then I started thinking about Jesus and the sacrifice He made for a fallen world full of sinful people who he didn't even know. He didn't just give his bone marrow; He gave his life. Saying "thank you" for that sacrifice seems insignificant as well, but I don't want to ever fail to try to let him know how thankful I am for the sacrifice He made and the gift of eternal life!

Happy Thanksgiving, Friends!
Bethany

Day 13 and Counting

I know that some of you read my blog solely to follow Avery's progress and might be eager for an update. One would think that because I'm sitting in a hospital day after day that I'd have nothing but time to blog. Unfortunately, Avery has been VERY high maintenance lately, leaving very little time for blogging. The good news is things are looking up...at least I think so.

The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.

Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.

The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.

I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.

Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.

Bethany

Just wishing...

... that all of my babies could be under one roof!

The Sad Days

Avery has now entered "the sad days" as the doctors refer to them. That would be day +6 through +12, give or take a few. There's not a lot to say about it except that it's heartbreaking to watch your child suffer day after day.

He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.

He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!

The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!

Thank you so much for your prayers!! We need them more than ever.
Bethany

Transplant

It's official! Avery now has new bone marrow...or at least the start of it! His new stem cells arrived around 10:30 pm to Cincinnati Children's Hospital, and he finished receiving them around 2:00 am. The doctors warned us that many families find the actual transplant uneventful, because the cell product itself doesn't look that much different from packed red blood cells, and there is no immediate result. However, I would describe the transplant as many things, but uneventful is not one of them!

After my initial post yesterday, the day progressed well. Avery was in a good mood, and although still refusing to eat, he seemed to be feeling good. The schedule for the arrival of the new cells was initially 9:30 to 10:30, and then the transporters called and said between 8 and 9. I was pretty excited all day yesterday just thinking about those cells making their way slowly to us. It's been a long journey for us, and this was definitely a climactic turning point.

Around 4:00, Avery's infusion pump started beeping, which isn't really anything that unusual. I called the nurse in, and she couldn't find the problem. She checked for kinks and changed his central line end cap but still no luck. Around 5:00, she called for the vascular team, which maintains the patient lines. They said there was a blood clot in the line, so they needed to put a clot busting medicine called tpa in the line. The line was refusing to budge, so it took about 45 minutes for them to even get 1 ml of tpa in it. I'll tell you right now, this mama's blood pressure was rising! He still had another line that was functioning, but his white line (which is the one that was clotted) is used for one of his immune suppressant drugs that can't be administered in his other line otherwise it would contaminate it for other meds and blood draws. I guess worse case scenario, they could have started a peripheral IV, but Avery has bad veins, and we were coming close to the arrival time of his new cells. I asked as many people to pray as I could. After two hours of the tpa sitting in the line, it flushed beautifully, and I felt such relief! I'm thankful that God is ALWAYS there to turn to regardless of how big or small our problem is!

After the line issue was resolved, I felt a little better, but then we were told that the cells were running late. I had been pensive all day just thinking about the what the donor must be going through and those amazing, life-giving cells that were coming our way. It may sound silly, but I was praying for their safety and that NO unexpected harm would come to them. Finally, around 10 we got the call that they were in the city, and the nurses came in and premedicated Avery. I felt the biggest thrill when I saw the group of nurses and doctor walk to our door holding a bag of bone marrow intended for Avery Weston Hoskins, birthday 4/14/08. This is what we had been hoping, praying, dreading, and anticipating for months, even years now!

The bag didn't look that much different from blood; it was a little lighter colored since many of the red cells had been removed. The nurses started the verification process of reading and re-reading numbers and getting the lines ready to be placed in the bag. Wouldn't you know that Avery got a defective bag?? Yeah, my heart dropped to my toes again as the nurse pulled back the two pieces of plastic that should have given her access to a small port to hook up to the line, but instead, the plastic pieces broke off and the port stayed sealed. It took a couple minutes of trying and brainstorming before they got sterile scissors and were able to open it.

All hooked up and ready to go, the bag was hung and Avery sat in his bed staring at us like, "What's all the fuss?" As I watched the stem cells drip into Avery's central line and make their way into his body, I just felt so amazed that this was going to give Avery a new chance at life. It was quite surreal! The nurses did vitals every 15 minutes throughout the 2 1/2 hour infusion, and then for an hour afterward, then 30 minutes for a couple hours, then hourly for 5 more hours. The donor, although a 7/8 match for antigens was a different blood type, so there was a greater chance he would have a reaction. However, besides a few high blood pressures, his vitals were great. Avery was born type A blood, but now he will be B like his donor.

This morning, as expected, Avery's ANC (Absolute neutrophil count which has to do with white cells that fight infection) was essentially zero. The chemo has been killing whatever existing cells Avery had, and the new cells finished depleting what would have been there. His other counts were good. We've been told that they will all drop while the new cells are engrafting. That may take anywhere from one week to several weeks depending on how long the new cells and Avery's body fight each other. The new cells will recognize they're in the wrong body and attack it (graft vs. host), and Avery's immune system, although suppressed, may put up a fight. This will all determine his symptoms over the next few weeks, but hopefully, slowly but surely, Avery's counts will begin to climb a little at a time as the new donor cells begin to work as his own.

I know we have a long road ahead of us. It will take months before Avery is free from transfusions, and he will continue to be on immune suppresants and other drugs, even when he comes home to keep his body from rejecting his new marrow. But I am so hopeful of what is to come! I am so grateful to the young man who selflessly donated his bone marrow to my child who he didn't even know. And I am so thankful that God has brought us this far!

Please continue to pray that Avery will be able to endure the symptoms of the chemo and grafting process over the next weeks.

Bethany

Day 0: Cell-ebration Day!!

Well, today is the big day! Actually, we've been told that transplant day, aka new cell day, is sometimes disappointing to families because it's seems uneventful. The actual process of receiving new stem cells isn't much different from receiving a blood transfusion. Plus, there is no immediate result. Usually, blood counts get worse before they engraft and start producing their own cells. But, I'm pretty excited about it.

At least I was until support group yesterday. The BMT unit has a weekly support group for the families here to meet in the parent lounge, enjoy some pizza, and talk about how things are going if you want. I didn't go last week, but yesterday the social worker reminded me of it, and I thought, "Why not?" I was ready for a break. We all introduced ourselves and shared why we're here briefly, and then parents started talking. I caught myself breaking down multiple times because there were some parents whose tears were just flowing as they talked, and I felt so bad for them. Plus I could relate to many of the feelings being expressed. But the more I heard from some of them increased my anxiety level. I love details and information, but sometimes ignorance really is bliss. A couple moms talked about the mucousitis that their kids were experiencing, which is basically sores and inflammation throughout the mouth and GI tract from the chemo. One lady said her 17 year old son is on 2 pain pumps, and he's day +9 post transplant. It made me worry because Avery has some beginning mucousitis, and he has no way of expressing how uncomfortable he is. He's not eating much, so it must be bothering him, but he complains so little that I wouldn't know if he needed pain meds or not. It is expected to only get worse over the next few weeks. Then a couple started talking about their 10 month old who is Day +30 post transplant and how they had a child die in 09 from the same genetic condition their son has. I heard about a child whose new cells never engrafted and he passed a couple months ago. It was so heart breaking! I have been focusing on the positive and not even considering the "what if it doesn't work" option, but yesterday made that option more of a reality. So, I'm not sure if I'll be frequenting the support group in the near future.

Avery was up until 1:30 again last night. His sleep schedule continues to get more and more messed up. It's hard for me to be annoyed with him when he's so happy about it, though. It has made for one exhausted mama, though. The late nights, countless interruptions throughout the nights, and stressful days are taking their toll.

They're going to be starting Avery on extra fluids today because they want him to be well hydrated when the new cells arrive. The stem cells are being harvested this morning from the donor, processed, and then transported to Cincinnati. They are expected to arrive here around 9:30, and Avery will be given them immediately while they're "fresh." The length of the infusion will depend upon the volume they're able to harvest and send. It will be adjusted for Avery's age/weight, and then they will be put through his central line over a series of several hours with vitals every 15 minutes to monitor his reaction. He will also be premedicated with benedryl and tylenol.

I have had a few worried moments last night and this morning. What if the donor backs out at the last minute or something would happen to the cells during transport?? I know, the chances are minuscule, but those thoughts have crossed my mind.

I will try to update with more details later. Thanks everyone for your prayers today!

Eagerly waiting in Cincy,
Bethany

My Mini-Meltdown

Here I am at the hospital, past my bedtime, but I just have too much on my mind. Tonight while I was rocking Avery, my mind started wandering to my other two kids, and I just got overwhelmed with missing them. I think I've been doing pretty well with it all, but right now I'm struggling just a bit.

My mom told me yesterday that Emerson was rolling from side to side, and it looked like she might try to roll completely over. Then she put the phone down to her and let me talk to her. She was just cooing and making those adorable baby noises! As soon as I hung up, I started to cry thinking about what all I'm missing with her. Mom is going to try some baby food with her today. Oh how I wish I could be there!

And my biggest baby, Bryson, has had a few tears this week, and I wasn't there for him. I've not even talked to him on the phone because I'm afraid that would only make things worse for him. Today is pajama day at school for Bryson, and Sarah sent me a picture of him in his Thomas Train pjs, with a big, excited grin on his face to wear them to school. He might be 5, but he's still my baby, and he makes me laugh so much!

If you actually made it this far through my post, I'm sorry that I have nothing inspiring to say right now and that I'm complaining. I know I have a lot to be thankful for, but at the moment all I can think about is the distance between me and my other kids and how badly I just want to be with them. And I can't even let myself think too far into the future! We're only 2 weeks into this; there's a LONG road ahead of us.

Bethany

Day -5

The days just keep moving along, even though it seems at a snail's pace, and I must say, considering everything they're pumping into his little body, Avery is doing awesome! He's had some belly issues and been a little grumpy and tired, but that's not unusual. His blood counts seem to be dropping a little more quickly too, but killing cells is the chemotherapy's job, so that is normal too. The little guy has pulled his ng tube out twice this week (both on my husband's watch...ahem...:-]), and is going to have it put back again today.

As I watch those toxic chemicals run through the little tube into Avery's central line, I feel kind of sick that we're actually doing this to him. Of course I know it's in his best interest, but that doesn't make it much easier. I've been holding my breath, just waiting to see how he reacts. He does have another day of the current chemo, and then one last kind of chemo to take this week. It's the bad stuff from what I hear. It is designed to wipe out any existing bone marrow or immune system leftover from the previous two rounds of chemo before the new stem cells are infused.

This Friday, the 28th, is the big day! That is when Avery will receive his donor stem cells, which will hopefully graft quickly into Avery's bone marrow and begin producing healthy cells for him. Because of privacy policies in place, we're not allowed to know much about the donor. All we know is that he is a 20-year old male, and one last piece of information that was red-flagged during the evaluation process is that he spent 4 days in juvenile detention. This wasn't a disqualifying factor, but it was something they passed on to us. I thought it was rather humorous, and I'm so thankful that somewhere in the world a 20-year old ex-juvie is giving my son a chance to live! About a year post transplant, there may be an opportunity to correspond or meet.

Phillip and I have been rotating in and out based on Phillip's work schedule and our other kids. It's tough; we have literally been passing each other and communicating via quick phone conversations and texts. It feels strange for me to leave my sick boy at the hospital, but we're trying to provide some stability for Bryson and Emerson too...mostly Bryson. He's having a rough time with all of this and asks daily when Avery is coming home. Avery has been in and out of the hospital all of his life, so Bryson is used to that, but this extended stay and not being able to see him is different. He gets teary-eyed even talking about Avery, and he told me last night that I'm not allowed to push him on the swing until Avery comes home. I'm not sure if that's his way of having something to look forward to or what. For me it's very odd doing "normal" things right now. Yesterday, my cabinets and fridge were practically empty, so I loaded up Bryson and Emerson and went to the grocery store. I bought necessities, but honestly, I didn't feel like being there and I felt like I was neglecting Avery by being at the grocery store when he's in the hospital. I know, that's weird, but everything is so mixed up right now. I feel disconnected to Bryson and Emerson after spending a few days in the hospital. My sister hands me Em, and I think, "Okay, what does she need now when she's fussing?" This is all part of the process, and I know we'll get through it. It's just difficult at the moment.

We are literally taking it one day at a time, one hurdle at a time, one situation at a time. Please continue to pray that this last round of chemo won't be as bad as what they say, and of course, that they new cells will start working quickly. I appreciate each and every prayer that so many of our friends and family are sending up for us!

Love,
Bethany

Day -12: A Peaceful Day

I don't really know where to start here. It's amazing how one day in a hospital seems to equal about a week anywhere else -- especially when you're alone with a sick little one. Watching a child suffer is so hard. It's even worse when he has no idea what is going on, and I feel incredibly guilty looking into his big, tear-filled eyes that seem to say, "Why are you doing this to me?" I've spent so much time standing by his bed singing all the songs that normally make him smile but now seem to have no effect, and trying to hold his hand or rub his head when he just pulls away like he doesn't want to be touched. I've also become quite good about speaking up for my little guy when I think he's in pain. Yes, I'm the high-maintenance mom who asks for numbing cream before his chemo injections, asks for Tylenol for even a low grade fever that the hospital would prefer not to treat, and I have discovered that morphine is GREAT! I just want this to be as painless as possible.

I guess at this point it's the little victories we have to celebrate along the way and the outcome we have to focus on. Last night as he was crying and rolling in the bed, I didn't know what to do but pray for him. I just have been asking God everyday to ease his pain and lessen the side effects all these drugs are having on his body. And today God blessed us with an amazingly peaceful day. He has smiled at all the old songs and tricks that he usually does, and I got him out of bed and we danced around the room a little to Barney tunes, and he actually giggled. That sure brightened my day! He's becoming a bit of a couch potato...or I guess more appropriately, a crib potato, since there's not a whole lot to do. I know that the sickness will return soon, but I'm thankful that God gave us today.

I've just been overwhelmed by everyone's concern for Avery. We have had so many people let us know in various ways that they are praying for him. I know that prayer is what sustains us when we can't go on our own strength. Thank you to all of you who pray, and please keep it up!


--Bethany

Day -15 and Day -14

Well, yesterday was the day that Avery moved into his temporary home in the Bone Marrow Unit at Cincinnati Children's. I dressed him in his new Elmo pj's (thanks, Aaron & Alicia!), packed his portable dvd player and Barney dvd, his Woody toy that he just loves to pull the string on, and a few changes of clothes. As we were leaving the house, Avery was grinning and clapping. He snoozed on the way there, and when we got him out in the parking garage, he started his loud, happy scream. He just has no idea what is in store for him, and I'm partly glad of that.

Phillip and I aren't so cheerful about the whole thing. It seemed appropriate that the weather turned gloomy and grey yesterday, and as we were traveling to Cincy, it was raining. That's pretty much how we felt. We're just both doing what we have to do and trying to make the best of it, but we're pretty anxious about the whole thing and still in a little bit of shock that it has come to this. Yesterday, Phillip and I were talking about all the people who called, texted, or posted on FB that they were praying for Avery. We just appreciate that so much.

We got Avery settled into his room, and the nurses had to do a few things on his admission, like a nasal swab and dressing and cap change on his central line. He just smiled through it all, and the nurses kept commenting how awesome he was doing. I'm not sure if I should be proud or not, but they also said he had the best nasal swab they've ever done. Apparently, most kids scream their heads off for that one. Not Ave. Piece of cake for him!

I came home last night and Phillip stayed since he was off today. But he is working the weekend, so I'm heading back tonight for the next 3 days. I'll be spending my first night away from my little Emerson, and I'm dreading it for sure. Plus, I'm sure Avery is going to lose his cheerful attitude soon, since they're going to place an ng tube today because of his esophageal problems, and he'll probably start feeling the effects of his chemo in the next day or two. This first kind of chemo he gets for 4 or 5 days is supposed to be the easiest...if there's such thing as "easy" chemo.

In the BMT unit, they count toward the stem cell infusion kind of like a space shuttle launch. So yesterday was day - 16 and today is day - 15. As the count down continues, Avery will feel sicker and the risks of infection will be greater. But, one day at a time, sweet Jesus, is all I'm asking. When I look back over the last few years at what all God has brought us through, my faith feels a little stronger. Each sickness, diagnosis, procedure, has slowly escalated to this climactic event, but I know that He will NEVER leave us or forsake us. My mom used to tell me when I was little and afraid that God sent his angels to watch over us, and that they were even in the room with me. That used to make me feel calm to know that even though my eyes couldn't see it, God was protecting me. I can just imagine Avery's little room filled with guardian angels and God Himself looking down from Heaven at my little boy in his Elmo pjs lying in a hospital bed.

Thanks so much for your prayers for my family!
Blessings to you all,
Bethany

Our Life is About to Change

It's Sunday morning, and I wish I were getting ready for church. But instead, I'm sitting here typing and mentally going through my to-do list for the day. Phillip and Bryson made a quick trip to Indiana, so I'm home with Emerson and Avery. Taking them to church by myself would be difficult since neither of them walks, and they both require bottles and diapers. I could probably get us there with the help of my double stroller, but once in a pew, if they both require attention, I know I couldn't carry them both at the same time. So, I'm home today. I'm hoping to make the most of it by getting some house work done.

I'm sure you're tired of hearing it by now, but our days of normalcy (if you consider our current lifestyle "normal") is running out. If nothing happens, next Thursday is admission day to the Bone Marrow Transplant Unit, and then Friday the chemo begins. I got the schedule for the first couple of weeks while Avery is there, and it's like 5 days of one kind of chemo, a day of rest, then 7 days of another kind of chemo, then a day of rest, then 1 day of the heaviest chemo that will make him the sickest, then two days of rest, and finally the stem cell infusion. We've been told that by about week 2 of chemo, Avery is going to be very sick with vomiting, diarrhea, mouth sores, possible fever, and just feel yucky overall. He will basically have no immune system. I met with the transplant doctor on Friday to go over the consent and officially sign it, and if I weren't freaked out enough before reading it, I certainly was afterward! The words "risk of death" and "fatality" were in there just too many times. Not to mention organ damage and changes in the central nervous system. She told us that any illness or infection can be life threatening during this process, so isolation and protection from germs is critical. Lucky for us, cold and flu season is just starting. :( Dr. Mehta said that mild to moderate illness can be treated, but anything that becomes more severe will lead to Avery being moved to ICU, and could cause death. I know that they have to lay it all out and give us every possible risk involved, but when it's YOUR child, even those unlikely risks are scary. With each day that passes, I feel my anxiety level rising just a little. I lay in bed and think, "Can we do this?" "Can Avery handle this?" "What if it doesn't work?" In some ways, Avery is such a strong little boy, but in other ways, he's incredibly fragile.

After the stem cells are infused, it's a matter of waiting for them to graft into his body and start producing cells on their own. This time is probably the most critical, as most patients develop some level of Graft vs Host disease as the new cells realize they're in the wrong body and attack it. Again, mild to moderate can be treated, but severe GVH can be life threatening. If Avery responds well, and the new cells start grafting and producing some cells, after about a month or so, he will be moved to the Ronald McDonald House across the street from the hospital. We will stay in an isolation transplant suite and go to the hospital every day for check ups, transfusions, and occasional admissions depending on his blood counts. We were told to expect to be at the McDonald House for at least 100 days. If Avery's new marrow starts producing cells and his health is stable, we can eventually come home and just drive to Dayton Hem/Onc clinic daily for check ups there.

Phillip and I both were feeling a little overwhelmed the other night after reading through all the paperwork they gave us. After talking about it for awhile, we came to the conclusion that the only way we're going to be able to make it through this is to keep our eyes focused on the end result. We have to believe that no matter how bad things get, and the doctors keep reminding us that things are going to get quite bad for awhile, that he will get better. In a year, Avery will hopefully be living a life free of transfusions and weekly blood counts.

And, by the way, we ARE going to take a vacation as soon as Avery is healthy enough to go. :) I told Phillip that I don't care what strings we have to pull to make it happen, we need it. With Avery's health being so bad over the last year, we've not been able to go very far. So visions of my 3 kids, husband, and me sitting on the beach relaxing are also keeping me going!

So I'm going to try to enjoy the next few days with us all under one roof and get us all packed to be going different places. As always, we sincerely appreciate your prayers for the Hoskins family!

~Bethany

Why Me?...Why Not?

Have you ever thought, "Why me?"

I have.

I've caught myself falling into that frame of mind occasionally. After much thought and prayer, I can answer that question with all kinds of reasons, including scriptures from the Bible. I probably should ask myself, "Why not me?"

Have you ever noticed how people blame God sometimes for bad things that happen in life but often fail to praise Him for the good things that happen in life?

I have.

I'm guilty of not thanking God enough for the good things He has done in my life, because every good and perfect gift does come from God, after all. And the bad things that happen, God promised that he would work them for my good.

There are people all over the world facing adversity, many much greater than mine. As my husband preached recently, I want to look at my opposition as an opportunity for God to work.

I'm reminded of a book I read years ago, The Hiding Place, by Corrie ten Boom. She and her entire family were taken prisoner by the Nazi regime for hiding Jews in their home. They were separated and sent to concentration camps where they were forced into hard labor, starved, and treated worse than animals. During her stay, Corrie struggled with anger at the injustice she saw and questioned why God would allow such pain. Corrie's sister, Betsie, who though was physically weaker was a woman of unshakable faith, took every opportunity inside the camp to share the love of Jesus and, although she died there, even planned how she would use the experience to reach others on her release. Some of her last words to Corrie before dying in that terrible place of torture were these: "We must tell them that there is no pit so deep that He is not deeper still. They will listen to us, Corrie, because we have been here."

You know, we can tell others of God's keeping power, deliverance, healing, and strength, but how much more of a testimony when we have been there...when we have experienced God's keeping power, deliverance, healing, and strength right in the middle of the greatest trial of our life.

Here I am, believing with all my heart that God is going to be faithful in my trial. I would never equate the adversities I have faced in life with being imprisoned in a concentration camp, but when I'm seeking an answer, I'd love to be able to have Betsie's attitude. God's love is deeper than any pit, and someday others will listen to us because we have been there.

God bless,
Bethany

Pressing On

Surviving. That's how I'd describe the last couple of weeks. Picking up one foot and placing it in front of the other, not looking back, and not looking too far ahead either...that's been my survival tactic.

The prep for the actual bone marrow transplant is designed to be so rigorous and exhausting that I believe part of the mission is to push the families to the point where they say, "Enough already! Let's just get this thing started!" Of course, the other mission of all this testing is to check out every single aspect of the patient, big and small, so that there are absolutely no surprises when the transplant process begins. By next week, the transplant team will know absolutely everything medically possible that they could know about Avery Weston Hoskins!

There have been a few additions to the typical testing along the way. As is his style, Avery can't just do anything by the book; he has to be more complicated. So the first addition is a surgery this Thursday to remove his mediport and place a central line instead. For some reason, his port has migrated so that it is touching the side of his heart. The docs are concerned that it could cause an arrhythmia if not removed ASAP. The second addition is another surgery next week that the ENT felt was necessary considering Avery's swallowing issues. So, they're doing a triple scope (bronchoscopy, laryngoscopy, and endoscopy) and taking some biopsies, washings from the lungs, and placing some sort of probe. Both of these procedures will require staying overnight at the hospital and be somewhat painful. The donor has been activated, and if he/she is willing to donate, our doctor would like to admit Avery to the transplant unit the week of October 10th, and begin his preparative regimen of chemotherapy and immune suppressants.

I don't like living in survival mode. I feel like when I'm there, I don't take time to enjoy life. With the transplant looming ahead, we have been trying to break out of our routines to make some memories and have some quality time. Last weekend, we made a quick trip to Indiana, which may be the last of our family trips for a while. We've been trying to do some "ordinary" things that we've been too busy to work in recently, like going out for ice cream or a family trip to the park on a nice evening. We've been spending some extra time before bed with all five of us piled into our king size bed cuddling and talking.

We did take time to capture Emerson's first bath with her brothers. Avery loves his bath time, and he thinks the more the merrier!


Avery thinks his big brother hung the moon! Bryson says Avery is his best friend. A couple of mornings ago, he said, "I think Avery had a bad dream last night. He rolled on my side of the bed and laid on my belly, so I just let him sleep on my belly so he wouldn't be scared." Here they are wrestling, which of course, Avery thoroughly enjoyed.


It's easy to get discouraged and feel overwhelmed. But just when I think I've had all I can take, I remember how many people all over the country are sending up prayers for Avery. His name must be echoing in Heaven, and I know that God is mindful of us. I've had some sleepless nights lately that have driven me to my knees, which is probably where I need to be more often. In my times of prayer, God has been so close, and I get up feeling like maybe I CAN do this!



We went to church the other night, and Bro. Bennie preached a sermon about "One Thing" that matters. He talked about this race not being one of speed but of endurance. His main theme was about pressing our way to Heaven. It's not always easy, but when you get rid of all the distractions, it's all that really matters. I felt like that sermon was applicable to me in more than just one way. Pressing on and having patience and endurance is what is going to get me through this huge ordeal for our family and also get me through this life. I just have to keep my eyes fixed on the prize!

I don't want to fail to say THANK YOU to all of you who pray for our little Avery. We sincerely appreciate them!

Love to all,
Bethany

The Good, the Bad, and the CUTE

It's been an eventful couple of weeks since I last posted, which is why I haven't really had the time to write. Today is Labor Day, though, and we're celebrating by doing absolutely nothing. Well, Phillip is working, but the kids and I are just hanging out at the house catching up on some much needed play/rest/housework.

The Good...
Bryson's Jonah party was a hit. The decorations ended up being very cute, and he and his friends watched Veggie Tales Jonah movie, enjoyed their favor boxes (note to self: next time avoid the kazoos and whistles!), played games, and ate candy and cake.

Now that my big boy is 5, he started attending the Young Fives program at school. He was so excited to ride the bus and go to school. I waited until he was on the bus before I let my tears fall because I didn't want to worry him at all. After a week and a half of school, I emailed his teacher to see how he is doing. He tells me every day that he follows all the rules, but he's not the most reliable boy in the world. He also told me that he learned about whales and that one of his classmates brought cupcakes for her 78th birthday...both of which I highly doubt! So imagine my surprise when I received an email back from his teacher saying that Bryson listens well, follows all the rules, and in her words, "is a lovely student" to have in her class. Yay! Maybe there is hope for my little rascal after all!

More good news is that Avery has been doing the "side sit," which we worked hard on in therapy for a while. He resisted our attempts, but he is doing it in his own time and way. I also watched him pick up a t-shirt from the floor and place it on his head, almost like he was trying to put it on. I love watching my little boy do new things!


Emerson has been sleeping a little better. She is going about 5-6 hours per night before waking to eat. She even had one 8 hour night a couple of nights ago! That was fantastic! She is getting big so quickly, probably because she is quite the eater. We have fallen into a new normal with 3 kids, and it's not quite as difficult as I imagined. We've even gone out to eat quite a bit with them which is something Phillip and I thought we wouldn't be able to do anymore. Now going to the grocery store is a little tricky for me since Avery and Emerson both have to ride in the cart. I end up with hardly any room for groceries, but we're figuring it all out.

The Bad...
Hmmm. Where should I start? I guess the biggest, baddest thing we're dealing with right now is Avery's health. We met with the transplant team a couple of weeks ago in Cincinnati. They agreed that a transplant is necessary very soon for Avery since the transfusion schedule he has been on is not sustainable long-term. The BMT doctor said that until recently, they didn't transplant for Avery's condition (dyskeratosis congenita) and they still don't on some patients who are 10 or 15 and have already developed lung and liver disease, but with Avery being only 3 and no signs of those conditions yet, he is eligible. She has ordered some pretty major evaluations on him to check all of his main organs to see if they will be able to tolerate the chemotherapy. As long as nothing shows up in the next couple of weeks of testing that would disqualify him from a transplant, it looks like we'll be ready to begin within a month. Between now and then, Avery has a bone marrow aspirate/biopsy, kidney tests, liver/kidney ultrasounds, full body CT scan, ENT & neurology consultations, lung evaluation, and a few more tests I believe.

This is a time of my life that I never really believed we would have to come to. I dread it so badly for him and for our family. I get stressed easily, and just spending days in the hospital with Avery when he's sick stresses me out. Somehow I'm going to have to find the stamina to endure this for months, and from what we've been told, he will be sicker than he's ever been. The side effects of the chemo alone will be tough: mouth sores, vomiting, swelling/irritation of the feeding tubes, seizures, etc. So far, we've been told to expect to be inpatient at Cincinnati Children's Hospital for 4-6 weeks if all goes well, and then we'll be staying at the Ronald McDonald House for at LEAST 100 additional days to go to the hospital daily for check ups, treatments, transfusions, etc. While Avery's health is the priority for our family right now, I'm also dreading being separated from my kids and husband for so long. The isolation restrictions are pretty strict. I'll be away from my new baby and my 5 year old, both who I feel need me so badly in different ways. I'm trying to start preparing Bryson by talking about Avery being in the hospital. Last night, he said, "But I can't sleep in my bed when Avery isn't in it!" I'm also trying to plan ahead on how I'm going to get Emerson sleeping in her own room as soon as possible and trying to allow her to drink from a bottle so others can take care of her. I hate rushing these things to since Emerson is my last baby, I wish I could just enjoy these days. The only thing that keeps me from falling apart is thinking that this time next year, Avery should be doing better. I know that God won't put more on us than we can bear, but sometimes I think we've maxed out! But, I have an amazing husband, family, and more than that, a God that I know will sustain us. Please keep us in your prayers if you think of it!

The CUTE...

It just wouldn't be right for me to end this post on a negative note, not when I've got the chance to share more cuteness from the Hoskins clan!

This is what Bryson looks like almost everyday when he comes in from playing outside.

My adorable little Emerson Rose

Here is cuteness x 2! Emerson with her cousin, Ava.

My sweet little Avery. He came straight from the hospital infusion room to the party and still had plenty of smiles!

Bryson and Avery enjoying the last of their pool days! Even Phillip joined the fun.






Happy Avery !





Yes, I know I went a little picture crazy. :)
Blessings to you all,
Bethany

Birthdays!!

This week has been a week of milestones for 2 of my children.

Tuesday, Bryson Douglas turned 5 years old!! That sounds way too old! I remember the day we brought him home, and it feels like it was just yesterday. He was our firstborn, and his chubby cheeks and orange hair captivated our hearts from the first time we laid eyes on him. I knew he was going to be a handful. He fought sleep and nearly wore me out eating every 1 1/2 to 2 hours. And I guess between all that eating and his strong will, he just grew so quickly and did everything so early! He has caused me to experience every emotion possible, I think. I have to admit, he's even made me angry and frustrated at times...I hope that doesn't make me a bad mommy. :) But most of all, I have a great sense of pride and amazement as I watch him grow, learn, and become a kind little boy. Everyday there's some new challenge he presents as I think we conquer one bad habit or behavior and another one seems to start, but there's also some new thing he says or does that makes me smile and completely overshadows the negatives.


Here are a few things I want to remember always about this stage of Bryson's life:
1. He's a very loving big brother. He takes this role very seriously, and I love how he is so compassionate with Avery and worries about his well-being.
2. He loves to be read to, and he will remain completely still and obedient as long as one reads to him.
3. His favorite cereal is Lucky Charms, and he calls the marshmallows "mushrooms." I can't bring myself to correct him!
4. He's obsessed with the story of Jonah. Every fish he sees looks like a whale to him. He acts out the story over and over again with his stuffed shark and stuffed Larry the cucumber. He has me hold Larry sometimes as he tells the story and plays the shark. He even will find the book of Jonah in the Bible and stare at it or ask us to read it to him, and he loves to listen to the book of Jonah on Phillip's Bible To-Go MP3 player. Guess what the theme of his bday party is tomorrow? You guessed it! I'm not kidding when I use the word "obsessed."
5. He will play outside as long as he possibly can, especially when he can play in dirt. I often catch him sneaking out the front door in his underware. Sometimes I make him come get dressed; sometimes I have bigger fish to fry and just shrug my shoulders. My neighbors probably think we're crazy! There he'll be by the side of the house playing in a dirt pile with his trains, talking to himself all the while!
6. He wants to be a farmer when he grows up to plant gardens and milk cows.
7. He writes songs these days. He'll say, "Mom, I wrote a song." And of course I say, "Can I hear it?" In his sweet voice he'll sing; sometimes it's about how much he loves me and his family or sometimes it's about Jesus. One of my favorites went something like, "Jesus died on the cross, oh- oh- ohhhh, Jesus died on the cross, Oh poor, old , sad Jesus." :)
8. I love how he tells me I'm his best friend and he's never going to leave me. I tease him sometimes about how he's growing too quickly or how one day he's gonna grow up and leave me, and he gets all serious and vows to take me with him wherever he goes. He even tried to outsmart me one day when I insisted he eat all of his food. He said, "But Mom, you want me to stay your little boy forever, so I just will quit eating so I won't grow."


The other "birthday" is our newest edition, Miss Emerson Rose. She is one month old today. She has stolen our hearts and brought new life to our already busy family.

Here are a few things I want to remember about her at 1 month old.
1. She has gotten to be quite the little pig. She wants to eat just about all the time, and I usually feed her. :) Which means she's already 10 pounds!
2. She has the loudest cry of my 3 kids. She has this high pitched scream that makes Avery stare and clap his hands in frustration and Bryson cover his eyes and say, "Make it stop!" When she's not screaming, she does a lot of unladylike grunting.
3. She is a little spoiled and loves to be held.
4. I dress her up pretty much every day. I'm sure the fun will eventually wear off, but for now, I'm having a ball!
5. Last, but certainly now least, her hair is looking a little more red everyday. Yes, it appears I may have won the gene-lottery once again and gotten myself another red-head. What are the chances of that??



Until next time...
Bethany

And Then We Were Five...

I still have a hard time believing that we have THREE kids now! Phillip and I were talking the other day about how it seems surreal to think that 9 years ago it was just the two of us, and now we wonder what in the world we did with all that time and money back then. :) Now the little people officially out number the adults in the house. Oh, how our lives have changed!

We have been blessed, that's for sure! Sometimes I have to force myself to not let my mind get the best of me and make me forget that. It's been especially hard lately. I think having a new baby in the house just highlights more of Avery's special needs. We kept a little boy the other night who is just 2 months older than Avery, and he and Bryson were playing outside together, pushing each other on the swing set, laughing, arguing, and doing all the typical stuff 3 and 4 year olds do. I couldn't help but look out the window and think, "This is how it's supposed to be for Bryson and Avery." Instead, Avery was sitting in the house on the living room rug with his basket of toys. Sometimes life can seem unfair, but I know that God doesn't make mistakes! And every time Avery gets poked by a needle, we hear how low his blood counts are, or he has to get blood products, which is pretty much weekly these days, I find myself praying that God will just let us keep him however different he may be. I hear about all these other kids who are sick, and it makes my heart so heavy. Just recently, I've been thinking about a little girl from KY who was just diagnosed with leukemia. My heart goes out to that family, and I'm reminded again how I'm not the only one with a broken heart and that God is mindful of all of these precious children.
The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit. Psalm 34:18

We just scheduled an appointment with a GI doc from Cincinnati, and we're really hoping he may be able to shed some light on Avery's swallowing issues. He is interested in food so much more than what he used to be, but he just chokes and coughs up horrible amounts of mucus anytime we attempt to feed him anything beyond a thin puree. If we could figure out the cause and work toward a solution, it would be such a blessing to be able improve this area of Avery's life!

My oldest, Bryson, has a big birthday coming up in a week and a half. I can't believe he's going to be 5! I'm so proud of the little boy that he has become. Yes, he has some rough edges that we're still working on, some days more than others, but he is such a smart, funny, sweet little guy. I've been making plans for his party lately. I asked him what kind of party he wanted, thinking he'd say Thomas the Train or Veggie Tales or something like that. Instead, he said he wanted a Bible story party with Jonah and the Whale and Daniel in the Lion's Den. So, we've narrowed it to a Jonah and the Whale party. Of course he had to pick something that party stores don't carry decorations for, but I've found some cute things online. And Monday, we have his registration for school. He's going to be starting the Young 5's program. We debated Kindergarten, but since his birthday is so late and with Avery possibly getting a transplant in the near future, we decided Young 5's would be most appropriate for him. Avery will be starting the special education preschool program too, so they'll be in the same building. That will make me feel better about them leaving me!

I feel like most of my time these days has been spent feeding/changing Miss Emerson. I forgot how demanding such a little person can be. But, I'm enjoying her so much, even if I am a little sleep deprived. Some nights she does better than others, but I love just holding her close and smelling that baby smell. I know it will seem like the blink of an eye before my baby is no longer a baby.

Here's a few more photos of our baby girl!





~Bethany