Saturday, December 31, 2022

Greyden Roy at 10 Years Old

Hey Buddy!

You are 10 years old!! And also, your mommy here is struggling to do these life updates on time. Here we are, when you've been 10 years old for 5 months already and we're on the last day of 2022. But at least I'm doing them, right? :)

This may be a bit of an emotional post for me to write. Life has been a lot for you over the last year/year and a half. Really, ever since your CRMO diagnosis in early 2021, it's been hard for you to maintain your glass-half-full attitude. And we can't blame you for that one bit. You've just been through so, so much. So many doctor's appointments, pokes and prods, infusions, testing, unanswered questions, pain, and bad news. Not to mention the chronic pain, frequent fatigue, and anemia. You now dip in and out of depression and anxiety, which required several months of therapy for you to work through (and you will likely need to go back at some point). You've developed an intense PTSD reaction to needles and doctor's offices after some horrible (honestly, downright traumatic) experiences. And all of this is 100% understandable. Your fight to maintain health is a constant presence in your life, from the multiple medications you have to remember to take every day, to the wondering if it will hurt to walk tomorrow, to the way you have to pace yourself at sports practice so you don't run out of energy. It seems never-ending, and I guess for now it is. Because we don't have an end in sight. Your CRMO is not in remission, and you're still anemic, and you'll actually be starting a new treatment soon which requires injections at home. But you keep fighting, and we're so proud of you. You keep doing your best to play sports and do the activities you love, you keep pushing through the pain, you keep putting on a brave face to see yet another doctor. My heart breaks for you over and over, but we are doing our best to support you and you're able to still smile and laugh most days, so I think we're succeeding.

You are now in 4th grade, and you continue to really enjoy school. You are such a social person, and you crave constant connection with other people. I am so thankful you're able to be in a classroom and get that filled a little bit by outside sources. This year you're doing safety patrol, so you help with flag duty and carpool. You LOVE doing carpool, because it means you get to interact with probably hundreds of people haha. Whenever I pick you up after carpool duty, you seem so energized and always have stories to share with me (because apparently putting other kids into their cars can be SO exciting!!).

You still play soccer in the spring and fall, and you love it (especially the games). You are so competitive! Your CRMO does still hold you back at times with pain in your legs and feet, but you fortunately went through time periods this past year where you felt fairly strong and were able to play pretty well. 

You also did swim team again over the summer, and afterward you asked to join a year-round swim team! You are now swimming all year long for New Wave swim team. You go to practice about twice a week, and I think it's such good exercise for your body. It is zero impact to your bones, so I don't worry about you injuring your legs (where all your bone lesions are) near as much as I do when you play soccer. You did your first year-round swim meet a couple weeks ago, and you were the heat winner for three of your five races. This made you SO happy. :)

In addition to soccer and swim team, you absolutely love disc golf and seem to have natural talent for it. It's another low-impact sport, so pretty ideal for you. You've done a couple competitions now, and we very frequently find you throwing mini discs around the house for practice. It's also been a great activity to do with your dad, as he loves to play disc golf also when he's not actively playing ultimate frisbee.

You still do piano lessons and ad hoc voice lessons, along with being the vocalist for your rock band The Exploding Bobs. You've now performed on stage quite a few times, and you actually seem to enjoy it. You recently sang for our church (the song "Known" by Tauren Wells) and sang while playing piano at your piano recital (the song "Someone You Loved" by Lewis Capaldi), and you did so well at both performances. There were even people crying in the audience both times (which made you very happy hahaha). I absolutely love seeing you develop your musical talents. For Christmas this year you got a microphone so that you can sing and hear yourself while playing piano in our house. I'm excited to see what songs you learn next!

You and Krew are still going through a stage where you don't do a lot together. Krew is almost a teenager and now in middle school, so this makes sense. However, once in a while we'll catch you having fun together, and it's always nice to see.

You are still average for height and weight [at your last doctor's visit where they measured you, you were 4' 7.1" (52nd percentile) and 74.3 lbs (56th percentile)], and you are still on a tooth-losing hiatus (I don't think you've lost any teeth in at least the last 18 months!). We recently reintroduced baked egg to your diet, and you had a completely clear endoscopy, so you get to keep baked egg in your diet! This is such a game changer for us, as SO many baked goods that would otherwise be safe for you do have baked egg in them. (Your list of EoE allergies is now down to gluten, soy, dairy, unbaked eggs, pork, and green beans!) 

Bedtime is still a struggle for you (and us!) because you have a hard time settling and often come out of your room and say that your mind is racing or you're having bad thoughts. (Looking back, it appears that you were struggling with this a year ago as well). We just take it night by night right now. But you also still do a sweet thing that you've now done for years: when I say goodnight, you always hug me tight around the neck, wait for me to kiss your cheek or forehead, then turn your face and put a kiss in the center of my cheek. Every. Single. Night. Oh how I love this. :) I know it will end eventually, but I'll take it as long as it lasts!

That's all for now, Greyden Roy! We love you!!

Mommy and Daddy