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

She's Here!

Well, it's been almost 2 weeks since Miss Emerson Rose arrived, and she sure has changed our lives already! Around 1:45 on July 18, she was born via c-section. She checked in at 7 lb 9 oz and 19 1/2 inches long with what appears to be auburn hair. Yes, what are the chances that I could end up with another red head??? Bryson's hair was unmistakably orange when he was born; hers is dark, but it definitely has a red cast to it. I have to admit that I was filled with a lot of anxiety as I lay on the operating table that I did not expect to feel. I just was praying every second that she was going to be normal birth weight and healthy! The fact that she is absolutely beautiful (I may be a little biased, but seriously, she is.) is just a bonus!

See I told you so!


We're all adjusting to having an extra person around. The biggest challenge has been my restrictions from surgery, which include not lifting over 15 lbs. Avery is 34 lbs dead weight, and I've had a hard time sticking to the rules. But I know it's in all of our best interest. He is still a baby in many ways and wants to be held and cuddled too. Phillip has been great in taking over with him when he's home, and my mom has been in and out this week as well. Bryson loves Emerson of course, and he wants to hold her all the time. She was crying while I was in the bath the other day, and Bryson started singing to her and gave her a pacifier. He said, "Mom, I just gave her her sucky thing, and she quit crying!" Avery just stares at her and smiles like, "What in the world is that thing?"

I'm having a ball dressing her up. Phillip says it must be some form of child abuse the way I have dressed her and put hairbows on her head. It's just so much FUN! And this third time around, I think I'm enjoying the newborn stage so much more than I did before. I know that it won't be long until she'll be growing like a weed, and I'll be wishing that time would just slow down. So, I'm giving her lots of kisses and spending a little extra time rocking her. I'm not so worried about spoiling her or sleepless nights. I know that this too will pass!


But of course, as a mommy of 3 now, I'm busier. More mouths to feed, more messes to clean, more laundry to wash, more baths to give...etc. That's okay too. Even when things are really chaotic, I have to admit that I've been blessed with a beautiful family. For that I'm incredibly thankful!

~Love to all,
Bryson, Avery, AND, Emerson's mommy

The End is Near!!

Tonight is the eve of the birth of our little girl. I stayed home from church tonight to attempt to tie up a few loose ends and perhaps spend a few minutes of quiet time before things get crazy...or should I say crazier than they already are. Let me tell you, I am glad to see this pregnancy end! I have been so miserable the last couple of weeks that simply walking has been a trial. I'm not sure why; I don't think Emerson is going to be overly large or anything, but I have been sore and achy from my hips down. At the same time, I'm starting to feel the nerves kick in as I think about what lies ahead for me. The whole c-section, hospital stay, and recovery aren't things I'm looking forward to. I'm kind of a recluse when I'm not feeling well, and being in a hospital and trying to be cheery for all the folks who are excited to meet our little one will be trying. Not to mention that I start imagining germs on every person and thing in sight. No, I'm not crazy (at least not certifiable), but I do tend to worry about things when I probably should just relax.

On top of that, my mom is in Alabama with my sister, Rebecca, who just had her little girl last weekend. I'm glad Mom can be there for her since it's her first one and all, but part of me would love to be selfish and beg her to come home. But, I wont; I'll just have to share! By the way, my new niece is named Ava Julianne, and she's adorable in all the pictures I've seen. I just wish we could be together, but that will happen in time.

I doubt I'll sleep a wink tonight because I'm so excited/nervous/anxious about tomorrow. I'm just praying and hoping with all of my heart that she's healthy and everything is where it's supposed to be and working like it should. I'm also praying that I'll somehow be able to juggle three children, one with so many appointments it makes my head spin, and that I'll be able to be the mom I need to be to my three precious children. So if you think of us, whisper a prayer. We can use everyone you have to spare! I'll try to add some pictures whenever time allows. :)

And then Phillip decided to add another worry to my mind last night when he said, "What are you gonna do when she comes out a boy?" That would not be even funny at this point!

On my last night as a mother of two...I'm signing off!
Blessings to you all,
Bethany

Randomness

Well, I've done it again. I have gone too long without blogging until my mind has a hard time focusing on what to even write about. I'm blaming it on the fact that I'm in the last few weeks of my pregnancy, and I am seriously lacking in the energy department. Actually, many days I wake up with a to do list as long as my arm and feeling ready to go, but it doesn't take long until I run out of steam. This is where I am today. I took Avery out for labs today, made a stop at the store, got home and did some laundry, light housework, and attempted to pack my hospital bag. I think I'm spent for now, so I'll try again later!

Along the lines of pregnancy, I am getting bigger and slower by the day. Some women talk about the glow of pregnancy or how they felt so beautiful the bigger they got. Let's just say that I am NOT one of those people! I'm outgrowing many of my maternity clothes, and I'm not about to buy one single maternity item right now, so I'm wearing the same couple of things every day and lounging in Phillip's t shirts at night. The good news is that I'm still measuring on target, which because of my previous pregnancy has been a major concern for me. It appears everything is going well, and in less than 3 1/2 weeks, Emerson Rose will be here!! I'm starting to stress a little about what I'm going to do with two little ones in diapers, bottles, and who are immobile. I guess it will be about like having twins for a while...just one about 33 lbs, and another a newborn.

Last week, we actually went on vacation. It wasn't extravagant, just a trip to Tennessee to Pigeon Forge/Gatlinburg, but we had a lot of fun. We went to the Aquarium, Rainforest Adventure Zoo, took Bryson to the rides, and Phillip and B went to a car show. I got a little bit of shopping in, and we spent a lot of time at the waterpark at the resort. It is such a cool place with something for all ages, and the boys both loved it! It will probably a very long time before we get to take a vacation again with a baby coming and Avery having a transplant.

Yesterday was our 9 year anniversary. I can hardly believe it has been 9 years since Phillip and I started our life together. In some ways, I feel like it was just yesterday, but when I start thinking about some of the things we've been through together, I'm thankful we don't have to do that time over again. I can't even express how blessed I am to have such a great husband. When we got married, I knew that he was a good one, but I didn't realize how kind, generous, long-suffering (yes, he must be being married to me), and caring he was. We've had our moments when we didn't see eye to eye, but I can honestly say that our marriage has not be difficult. Now life has been difficult, and that has caused some strain on us as individuals and as a couple. But thankfully, we have been able to unite during some of the toughest times and get through it together. I don't know what I'd do without him, especially the last few years dealing with Avery's special needs and declining health. There have been many times when I felt so overwhelmed or like I just couldn't physically or mentally cope with the worry of the future or being in a moment when Avery was so sick or enduring a procedure that I was supposed to be strong for. Phillip has stepped in and been the strong one for both of us, taken time off work to give me a break, or just shown up and offered his calmness even though I know he doesn't always feel it. I love and appreciate him more than ever!

I'm enjoying spending the summer with my boys. Bryson is so full of energy that I have a hard time keeping up with him, but he makes me laugh by saying the funniest things. Today, he came looking for me but didn't see me. I heard him say, "Mom! Mom! Did you go invisible??" And Avery is still doing his thing. He's had some really low blood counts, and last Sunday night gave me quite a scare during a transfusion. His port infiltrated and he bled all over the bed. With platelets of 5 and a hemoglobin of 4.5, he didn't have anything much to spare. We had every nurse, supervisor, and resident we could find in the room trying to determine how to deal with this. Then there was worry that his port clotted. This mama was praying with all my heart, leaning on my husband, and broke out in hives. But he seemed to bounce back in a couple days as usual. He's heading back in the morning for another transfusion. I sure wish we could slow them down a little. We're still waiting for a donor to be found for his transplant. This week we were told that of the 8 initial perfect matches they thought were in the registry, 5 have responded to the request for additional HLA typing, and they are no longer matches. So they're now looking at 7/8 matches. We're hoping they'll be able to find one that will work.

Well, it is time for me to start dinner so I should probably quit my rambling. I will try to put a little less time in between my blogs so perhaps they'll be less random and more productive!

Blessings to you all!!
Bethany