Saturday, October 22, 2022

Greyden Roy: 10-Year-Old Interview

Well this is INCREDIBLY late, but here is Greyden's 10-year-old interview!! He turned 10 years old on July 28th...so I'm almost three months behind schedule. I'm trying to tell myself that I was just allowing him to really get into "being 10" before interviewing him. :)

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

We love you, Roy Boy!














Thursday, July 7, 2022

Krewon Lee at 12 Years Old

Oh Dear Krew, I am so far behind on writing this update. But here we go. You are now 12 years old!!


You have been 12 for about 4 months now, and I can honestly say that I love this age. You are just so much fun. You are acting more mature, like a teenager instead of a child, and you are conversational and witty and sarcastic. We have real, deep conversations and can talk through issues. There is very little "discipline" that has to happen anymore, as typically we can just have a talk and resolve any dilemmas.


You have grown an insane amount (you gained approximately 6 inches in height from age 11 to age 12 and jumped to the 74th percentile for height!), and your voice has deepened and your face has matured. You have started braces (you are doing Invisalign-type, so no one can really tell), and you now wear contacts so we rarely see you in your glasses.



You still love all things computers and programming. You regularly play Minecraft with and against your friends, and you also spend hours writing programming code that does all kinds of things, from mathematical calculations to creating video games. You also still love building with Legos and tinkering with electronics in your spare time. You now have your own room with all of your Legos in it, so I'll hear you in there digging through your Lego bins at various times. When not on the computer or building something, you usually have a book in your hand. You still go through hundreds of novels per year, mostly fantasy. We often have to tell you to shut a book when it's time for dinner, or to go to bed, or to be present and socialize with the people around you.



You are a walking encyclopedia of knowledge on various topics, and your nickname this year in school was "The Professor" because you would help teach the class and answer questions when you understood a topic well. You still struggled with your emotions in class at times, but by the end of the year your teacher said she could see a huge improvement in how you handled frustrations. It was so exciting to hear. (And yes, you went back to in-person school for 5th grade after doing virtual school for 4th grade. It seems like it was the right choice, fortunately!) You head off to 6th grade in a new school in less than a month, and I'm both nervous and very excited for you.



You are still a quiet and emotional kid compared to others, but you are much more in control of yourself now than you used to be, and you seem so much more confident in most social situations. Your anxiety has greatly lessened (or else you just handle it better) and you rarely seem depressed. You no longer go to therapy and are managing life just fine without it, which is so wonderful. Overall, you seem to be very content right now. Yes, you occasionally get moody and grouchy (because I think every pre-teen does!), but really it's pretty infrequent and super manageable.



Shortly after I wrote your 11-year-old post, you decided to take a break from piano. It was stressing you out too much. And then, after a year, you decided to start it up again just recently. It still definitely stresses you out, but you're trying to push through. I know it's hard for you to work through things that are difficult for you. You also decided to try swim team again this year after not doing it for three years. Your dad and I were shocked and also so impressed. You've not gone to every practice and have only done a couple of the meets, but we're trying to give you space to do it at your own pace. So far you haven't quit, so our current way of handling it seems to be working well enough!



We started going back to the ninja warrior gym this past fall and winter, and you really enjoyed that. It was great to see you participating in physical activity that you actually enjoy. I am sure we'll take you back again this fall once swim season ends and we're not at the pool almost every night.



You are still a cautious rule follower who avoids risks at all costs. We regularly leave you home alone now with a phone, because we know you are super responsible and won't do anything crazy. We can leave Greyden home with you, too, which has been AMAZING because now your daddy and I can go out together without kids or a babysitter!! This is a great new stage of parenting!



Speaking of Greyden, the two of you haven't been playing together as much over the past year. I know that your relationship will ebb and flow, and so this isn't unexpected. Hopefully you move into another period of really enjoying each other in the future, but I do realize that you are very different individuals with not much in common (other than living in the same house and having the same parents). At least you are typically kind to each other, and you care about each other's feelings, even if you don't hang out together a ton.



Overall, having you as our kid is SUCH a blessing. We love you so much, Krew!!


Love,
Mom and Dad
(I thought maybe you would appreciate me cutting out the "Mommy" and "Daddy" now that you're headed to middle school.)

Saturday, April 16, 2022

Krewson Lee: 12-Year-Old Video

I finally got around to recording Krew's 12-year-old video!! He's been 12 years old for a month and a half, but better late than never. :)

He has changed SO much in the last year. It's so bittersweet. Amazing to see him growing into a young man, but sad to know those younger years are gone. :)

Past years' videos are below, too!

Age 12:



Age 11:



Age 10:



Age 9:



Age 8:



Age 7:





Age 6:


Age 5:


Age 4:

Thursday, October 14, 2021

Greyden Roy at 9 Years Old

Greyden Roy, you're 9 years old, and oh what a year it's been! Here I am writing your yearly blog post over two months late (as usual), but better late than never.



I guess we should start out your yearly update with the biggest news, because it's impacting your life a LOT, and that is that in March of this year you were unfortunately diagnosed with another rare disease. Your new diagnosis is chronic recurrent multifocal osteomyelitis (CRMO), which is a very rare disease occurring in 1 to 6 per million people, and it typically occurs in females rather than males. (So you are extra extra special.) CRMO is a condition where your body attacks your bones and causes bone lesions (which might appear as swelling or holes in the bones). We know of six locations where you have had or do have bone lesions, and they have all been in your left (dominant) foot or lower legs, which has unfortunately really impacted your ability to run and even walk at times. We tried one treatment for a while, and it seemed to work but then stopped, so now you have started receiving a different drug which has to be given through infusions. It has honestly been a very tough eight months for you. You have gone through so many doctors visits, MRIs, blood work, a painful surgery, inability to run or walk at times, physical therapy appointments, the first of possibly many 4-hr long infusions, extreme fatigue, and chronic pain. In the midst of this you also had an endoscopy for your other rare disease, EoE (but endoscopies don't faze you much anymore, since you've had 17 of them). Most days you are still able to smile and find reasons to be excited about life, but I've noticed a huge change in your ability to cope with disappointments. While you used to always make lemonade from lemons, you are beginning to struggle to do this anymore. I think it's all just becoming too much. And I don't blame you one bit. Oh, the tears I've cried for you. My heart breaks over and over. But we are doing what we can to help you keep your head up and still enjoy life. And most days I think we're succeeding.



You are now in third grade and doing very well at school. You went back to in-person class in July of this year, and I think it's very good for you to be able to be around other people and socialize. I do think it's been hard on you energy-wise, as you come home completely exhausted many days (due to CRMO fatigue and another new diagnosis of mild anemia), but hopefully the benefits outweigh the exhaustion. You absolutely love seeing your friends and I really appreciate having others feed into your life.



You did soccer this spring and are in a fall soccer season now as well, and you love it so much but have indeed struggled during both seasons due to your CRMO. Running can be difficult and it can be painful and scary to kick with your left foot (which is your dominant foot). However, the doctors have said to let you do whatever physical activity you feel able to do, so we let you keep playing. You have told us that you think you are getting better at kicking with your right foot since you've been forced to, and we can tell you are always playing as hard as you can given your circumstances. You are one determined kid. Fortunately you are playing in a low-key league and your dad is your current coach, so you are able to take each practice and game as it comes and just play however you feel able to that day.



You also did swim team over the summer, and even though your anemia and fatigue made it difficult for you to make it through a full practice or swim meet, you kept right on giving it your all. You did score several points for your team at various swim meets, and I know that made you feel good.



You are still doing piano lessons once a week and you were doing voice lessons weekly as well at Bach to Rock up until a week ago. Your voice teacher just recently decided to leave Bach to Rock to pursue a different career, and you were DEVASTATED. (So many tears, oh my goodness.) Fortunately, it looks like we may do some private ad hoc voice lessons with him moving forward, which will also be easier on you schedule-wise as you are struggling to have the energy to keep up with all your extracurriculars (which used to be no problem for you). In addition to piano lessons and voice lessons, you also joined a kids rock band last fall as the vocalist. You totally love being in the band. Your name is The Exploding Bobs (unfortunately not your top choice for a name haha) and you've done several public performances and have created two original songs with your band instructor. Your band even won a very small local competition and then took second place in a virtual national competition against other kids your age who are in bands through Bach to Rock. It's so fun to see you perform and hear you singing on stage. You get nervous but you always push through your nerves and do a great job.



You are still very social and love spending time with friends. You prefer to always be with other people rather than alone. Which is sometimes unfortunate, because the time you and Krew used to spend together has really faded out over the last year, and now you two don't hang out very often. I think it may just be a phase that Krew is going through, and hopefully you two will be buddies again soon. You do have your moments of fun together, but they are much rarer than they used to be.



I think you may have grown out of most toys at this point. The things you play most are sports and video games. A new activity you've grown to love is disc golf, and you practice throwing discs at the basket in our backyard ALL the time. You also got a mini disc golf basket with mini disc golf discs for inside the house for your birthday, and you play with it nonstop. You also make your own mini discs out of the lids from your favorite veggie chip cans, and there are now random lids in all corners of our house. All your practicing has paid off, though. You played in a disc golf tournament this summer and won your age group, bringing home a trophy. You were SO excited.



You have now lost eight teeth and seem to be in a tooth-losing hiatus. At your infusion the other day, your height was 4'5.39" (57th percentile) and your weight was 66 lb 9.3 oz (58th percentile). You still do not like any foods that are spicy or garlicky. We reintroduced beef to your diet this year and you had a clear endoscopy afterward, so beef is NOT one of your allergens (hurray!). (That means your list of EoE allergies is now down to gluten, soy, dairy, eggs, pork, and green beans. The list seems so short!) You still love to snuggle on the couch or bed, and you still frequently come out of your room after bedtime, except now instead of giving us random funny excuses, you usually say it's because you can't stop thinking about something that is stressing you out. (Which is very sad but makes sense with how hard this year has been for you.) And finally, you you still do the same thing every night when I tell you goodnight, just like you were doing last year: 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. Makes my mommy heart so happy.



Alright Roy Boy, that's all for now. I hope you know you are so, so loved.

Love, Mommy (and Daddy)

Tuesday, August 24, 2021

Greyden Roy 9-Year-Old Video

It's time for Greyden's 9-year-old video!

Grey turned 9 on July 28th! We're still (yes STILL) in the middle of a pandemic, so we avoided a birthday party again this year. But he did get to have a friend sleep over. 

His yearly update with photos will be coming soon!

We love you Greyden Roy. :)

(Past videos are posted below as well!)