Sunday, December 31, 2023

Greyden Roy at 11 Years Old

Dear Greyden,

Here we are at the end of 2023, and I'm sitting down to write this life update on the last day of the year just like last year. But that's ok...you're still 11 years old, and better late than never. :)


I am so relieved to say that this past year has been a better one for you than the year before. Your health has been steady at an "ok" level. You started twice-monthly Humira injections at home last winter, which was definitely traumatic for our family at first, but we've found a process for doing them that seems to be working (numbing cream for 30 minutes, buzzy bee and ice for 3 minutes, you hold the iPad and watch a certain show while I hold the buzzy bee and ice on a nearby abdominal location and Daddy does the actual injection). You get a frozen Dr. Pepper or frozen Coke after each injection, which seems to be a big motivator for you. And the injections do seem to have improved your CRMO. You are only very occasionally limping, and you're able to run and play sports without restriction. I am constantly watching your gate for shifts (which we do see unfortunately) and you do complain of leg pain several times per week, but this is still a great improvement over the year before. We're hoping to do an MRI soon so get a more accurate picture of how you're doing. You've also been taking a higher dosage of iron supplement, which has improved your anemia symptoms. You're not complaining of exhaustion after school every day. And your depression and anxiety symptoms are much better as well. You definitely have down days where you just feel in the dumps, but it's not a near constant like it was last year. You still want to go to all your activities and do fun things and see your friends, and that's a sign to us that you're doing ok (since you previously didn't want to do those things when you weren't feeling well). 


Your EoE also seems to be doing ok as well. We haven't done any reintroductions or doctor's visits for your EoE in the last year, and I think we've all enjoyed the break from the stress. We just continue to do your Nexium twice a day and follow your food restriction diet (no gluten, soy, dairy, unbaked egg, pork, or green beans), and all seems to be going well on that front.


Thanks to your health being better, you are back to being your super social, energetic, goofy self. You crave constant interaction and entertainment all. day. long. I am so grateful you have school to attend to satisfy some of this need! Your dream life would be to be with friends all day every day with a full planned schedule filling every moment. Almost every day you say to me or your dad, "What are our plans for the day??" and if the answer is "we don't have plans" then you nearly die from disappointment.


You are still into all the sports. You continue to play in disc golf tournaments when they're available and play courses with your dad whenever he'll take you. You love soccer and continue to play in the local league in the spring and fall. And you still swim several times per week with a local year-round swim team. They have been pushing you to move up to the more competitive swim group, so we're trying to figure out if that's something that will work for you in the midst of all your other commitments and also for our family with our crazy busy schedule. I do think it would be good for you, because it focuses more on technique and improving stroke, which is what really interests you (rather than just swimming lap after lap).


You are also still in your rock band, The Exploding Bobs, and loving it. Your bandmates have become good friends. You all continue to write original songs (with the assistance of your band instructor) and give great performances of both your originals and covers. You all won the the Battle of the Bands this last summer against all the other bands at your music school, including the high school groups, and you and your bandmates were SO excited. 


You also still play piano and now you consistently perform vocals while playing at recitals. You just recently performed "Talking to the Moon" by Bruno Mars at the recent recital and did so well. Your piano teacher's parents came up to me afterward and told me that they were SO impressed, which is big praise considering that they are very technique-focused when it comes to music. 


You are in 5th grade and it is going well so far. You struggled with your teacher at the beginning of the year, but she left and you now have a new teacher who you get along great with. You are always happy to go to school in the mornings and you're getting good grades, so I would say all is well. Of course your favorite time of day is recess, when you get to play soccer or football with your friends. You always take your bright orange sunglasses to school to wear during recess and carpool duty, and sometimes you take two pairs of shoes if you want to wear a stylish pair inside and a different pair outside. (You crack us up. :) )


You and Krew still do not do a ton together, and I know sometimes this makes you sad. He is a full-blown teenager now and headed to high school next fall (he unexpectedly jumped a grade just recently) and this impacts your ability to relate to one another. However, we do try to encourage kindness between the two of you, and occasionally we find you hanging out and interacting and try to let it continue without interruption as long as we can. 


You are currently a little above average for height and about average for weight. (At your last doctor's visit in September, you were 4'10" (67th percentile) and 82 lbs (54th percentile).) You finally just in the last month started losing teeth again! You just recently lost a canine and a molar. Before that I think you went about 2 1/2 years without losing any teeth!


Bedtime is the easiest now that it's ever been, but that might be because we let you go to bed pretty late (usually 10pm or 10:30). You no longer come out of your room very often, and you only seem to get stuck on bad thoughts maybe once per month. This is a big improvement! And also, you still do your nightly thing when we say goodnight every night: 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. I will say once again that I love this so much, and I know it will end eventually, but I'll take it as long as it lasts!


Alright I think that's it for this year! We love you Greyden Roy!!

Love,
Mom and Dad (you asked me to stop referring to us as Mommy and Daddy recently... ;) )

Sunday, December 3, 2023

Greyden Roy: 11-Year-Old Interview

Here is Greyden's 11-year-old interview!! As is always the case anymore for posting these videos, he's been this age for several months already. But oh well...he's just all the more "11" in the video I suppose. :)

Here it is, along with interviews from past years below! Enjoy!

We love you, Roy Boy!
















Sunday, August 20, 2023

Krewson Lee at 13 Years Old

Dear Krew,

You are a teenager!!! We are several months into you being 13 years old now, and age 13 has brought so much growth and amazing changes for you. I'm so excited to share about 13-year-old you.



We'll start with the physical stuff. You have grown by leaps and bounds. You are now almost 5'5" and hovering around the 80th percentile for height. This is incredibly baffling considering that you were below the 25th percentile until age 11! You have continued to wear your aligner braces over the last year and now have straight top teeth (and the bottom teeth are on their way). You also were diagnosed with pectus carinatum and received a chest brace many months ago, but at your appointment last week the pediatric surgeon said that you've graduated to only wearing the brace at night since your chest looks so improved. You've also been exercising a lot more and are starting to develop upper body muscles, which you are super proud of. Your feet are huge - a men's size 10.5 - and you now wear your dad's shirts.



School is currently going well for you. You are in 7th grade, and you seem to like your teachers. Your math teacher is helping you prepare to take a placement test in the spring to potentially test into High School Math 2 for next year. We are super grateful to her for this! You still love math and science the most but get good grades all around.



Last fall was a very rough time for you, right after I wrote your last life update. Starting middle school was difficult and interpersonal relationships were very messy. You were overcome by debilitating depression and anxiety, and it made everything hard. You rarely smiled and cried daily. It was very overwhelming. However, through meetings with school staff, the pediatrician, and starting anxiety/depression medication, we were slowly able to pull you out of it. Now, nearly a year later, you are honestly a completely different kid. You smile, laugh, and joke daily. You are trying to make friends, even when it involves going outside of your comfort zone. You are choosing to exercise because you say it makes you feel better and helps you sleep. We are so incredibly relieved.



Last fall you started year-round swim with New Wave swim club, and it was a rough go for a while. You felt slow and unskilled and typically walked out of practices within 15-30 minutes. This is also the same time period that you were struggling socially at school and experiencing severe anxiety and depression. However, in the spring you made some new friends and also your anxiety/depression medication started to work, and you began applying yourself at practices bit by bit. Over this summer you swam for your summer swim team at Shepherd's Vineyard, and you saw that you were a valuable asset to your team. You also started becoming more socially confident and talking with your teammates, and you seemed to realize how awesome it can be to be part of a team. You now seem dedicated to swimming, and you asked to sign up for year-round again and told us that you want to go to practice three times per week (instead of the two that we required of you last year). In the month and a half between summer swim and year-round practices starting, you've frequently gone to the summer pool to swim laps to stay in shape. We are so impressed and shocked and excited by this development, and we can't wait to see how the next year of swimming goes!



Over the past year you have continued taking piano lessons again at your own request, and you seem to be truly enjoying it even if you still don't want to participate in recitals (and I don't blame you for that). For fun, your favorite things to do right now are video games, programming, spending time digging or "building forts" in the park, working on a pond for our backyard, fishing (a new friend has gotten you into this), and reading.



Your dad and I love hanging out with you. You are witty and crack sarcastic jokes, but you also enjoy deep conversations and pondering life together. You are constantly sharing your knowledge about various topics. You seem to be super honest and open with your dad and I right now, which we cherish. When we do have issues with certain behaviors, we talk about them and they're usually resolved pretty quickly without much discipline.



We love you Krewson Lee, and feel so fortunate to have you as our son!



Love,
Mom and Dad

Saturday, April 1, 2023

Krewson Lee: 13-Year-Old interview

We have a teenager!!!!! (Ahhhh!!!!)
Below is Krew's 13-year-old interview. We switched up some of the questions a bit this year. :)
Past years' videos are below, too!

Age 13:



Age 12:



Age 11:



Age 10:



Age 9:



Age 8:



Age 7:





Age 6:


Age 5:


Age 4:

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!!

Love,
Mommy and Daddy