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

The First Monday in June

June is here already!! Time is just ticking away, and 6 weeks from today, I'll be a mommy to a little girl. I'm getting more anxious by the day to meet her!

I just got home today from a week long trip to Alabama. It was somewhat of a spontaneous trip, but I was so glad to be able to get away. My parents were planning a trip south and offered to let the boys and me ride along. I cleared it with Avery's doctors and took off! Rebecca is 35 weeks pregnant and I'm 33, so it was fun to sit around and talk about babies and the woes of pregnancy. Of course, between our swelling feet, large tummies, and intense Alabama heat, we chose to stay home and just stay cool most days. But we sure had fun. Next time we see each other we'll both have little girls.

Here's how we look right now.


Some noteworthy news that is now a little over a week old is that my little Bryson lost his first tooth...well in the conventional manner that is. He did knock one of his four teeth out when he was 9 months old. I knew then that I had my hands full with this one. But he came in the kitchen a little over a week ago and asked me what was wrong with his tooth. I stuck my finger in his mouth and was shocked to see that it was wiggling back and forth. I told him to leave it alone, that it would fall out when it was ready. Of course, he couldn't leave it alone, so within an hour it was even more loose and bleeding. With some convincing, I got him to sit still, and with a little tug, it came right out. He cried for quite a while, not sure exactly why his tooth came out. I got a little misty eyed myself. Losing a tooth just seems like a rite of passage, marking one more step of moving from toddlerhood and a little closer to adulthood. I'm pretty sure that four is a little young to be losing teeth, but I figure the root was probably damaged from the loss of the tooth next too it. Who knows, but he did get some money from the tooth fairy!



Tomorrow it's back to the old routine with two appointments for Avery. I guess I better get off here because I've got some unpacking and laundry to do!

Take care, my friends!
Bethany

Just Trying to Catch Up

May is 2/3 of the way over, and I have yet to blog once this month. I could offer some excuses, but the truth is, I've kind of been avoiding this moment. Ordinarily, I enjoy posting regularly about goings-on in our life and sharing the good and bad moments of being a mommy. But I'm also pretty transparent as I write, and I haven't really felt like baring my soul lately.

There's no way that I can fully catch up on the last several weeks during my hiatus, but I will try to hit the highlights.

~I'm getting fatter by the minute, and my c-section is now scheduled for July 18...only 8 weeks away!! Emerson is growing and quite active, and her room is in the final stages of completion. Phillip is wondering what else I could possibly squeeze in her room. My sister had me a baby shower last night, and I got so many cute things! I thought I had a lot of stuff with my boys, but I'm pretty sure I've got even more for this little girl!
~Bryson finished his last day of preschool last week. I was so proud of him as he stood next to his teacher to receive his certificate! He looked so shy and serious. His teacher said that Bryson has excellent manners and is always so polite. I was thrilled with the good report and with his academic progress. As we walked outside following the festivities, there was an ice cream trolley waiting out front selling ice cream to all of the children. There's not many things that Bryson loves more than the ice cream trolley! Then I suddenly realized that I had no cash on me, and I had to tell him he couldn't get ice cream on his last day of preschool. Talk about feeling like a bad mom!! We walked past all of his friends in line or enjoying their treat, and I ended up taking him through Wendy's for a frosty. It wasn't exactly the same, but I tried to make up for it!

He's now officially registered for Kindergarten or Young Five's starting in August. He won't be 5 until August 16th, so we had been trying to decide whether or not to start him in Kindergarten. Now with plans of a bone marrow transplant for Avery which is going to put some serious stress on our family and have me in Cincinnati for months at a time with him, we decided we should probably put it off. So, we're planning to start him in the Young Five's program unless something changes between now and then. I can't believe he's even old enough to go to school!

~Avery has been truckin' along, smiling and clapping despite the many transfusions. He isn't making many red cells or platelets these days, so we're spending a lot of time in the infusion room. The study that he joined at Johns Hopkins has brought to light some new information that may point to the reason for his bone marrow failure. It's kind of complex, but essentially, Avery's end caps (telomeres) on his cells are too short. A normal person is born with longer telomeres that shorten over time through thousands and millions of cell divisions, which cause the telomeres to slowly break off shorter and shorter, leaving the cells exposed to potential damage and mutation. These damaged/mutated cells are what brings about the aging process: graying hair, loss of muscle tone, arthritis, and of course things like cancer, tumors, and organ failure. Because the blood cells divide more rapidly than other cells in the body, one of Avery's first characteristics of these shortened telomeres is bone marrow failure. A successful bone marrow transplant will fix his cells in his bone marrow; however, the cells in the rest of his body also have shortened telomeres. So, according to the doctor who is overseeing this study, we can expect signs of premature aging to affect Avery within the next decade. Some of these effects are pretty severe and life threatening.

This news has brought a dark cloud to my world lately. I try not to worry about the future too much, but sometimes I just can't help it. I have to admit that my faith has wavered some, but I'm trying to stay strong as I process this information and try to give it to God. As my husband said when he heard the news, "We know the man who made the telomeres."

Beyond this development, we've also been moving along in the bone marrow transplant process. The search coordinator told me a few days ago that there are 8 potential matches in the National Registry that they're going to screen more closely. Hopefully, we'll know within the next month whether any of these donors could be used for a transplant.

~Phillip is working his last week of second shift, thank God. I'm so looking forward to him being on days. We can actually have dinner in the evenings together and do normal, family stuff! He's also been working on some house projects that have been long in coming. We're in the process of getting new siding, and then after that, we can finish our landscaping, get a new deck, pour a new driveway...whew! Makes me tired just thinking about it, and I'm not even the one doing all the work! I am glad I've got such a handy husband.

Despite the concern for the future, I am so looking forward to having some good days with my family this summer. We're hoping to take a short vacation to Tennessee in a couple of weeks if Avery and Emerson cooperate. We'll just take the rest a day at a time, which has become my mantra lately.

As always, we sure appreciate the prayers that so many of you all offer on our family's behalf.
~Bethany