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!)












Sunday, May 30, 2021

Krewson Lee at 11 Years Old

Dearest Krew,

You are now 11 years old, and have been for almost three months. It's time for me to write an update on what you are like as an 11-year-old, and the answer is... you're awesome. :)



Your 11th year wasn't a typical one. It started with the pandemic shutting things down just as we were planning your 10th birthday party, and so your requested sleepover with some of your friends never happened. Fast forward to a year later, and things are basically still the same. We still aren't really doing indoor playdates with friends (although I think they'll be starting soon), you're still doing virtual school at home, and extracurricular activities are restricted to those that you can do outside (of which there aren't many that you like). You still haven't had your birthday sleepover.



In all honesty though, you've handled the pandemic shut down well. You already preferred to often be home, in the quiet, reading a book or working on something on the computer, so the shut down just allowed you to do more of that. You've missed seeing many of your friends, but are happy to play online with them and love when we have outdoor playdates. You've really appreciated doing school on the computer and not being required to go into the school building.

You are still our more quiet child in social situations, but I don't know that I'd say you seem as shy as you used to. Over the last year, it's like your shyness has developed into a quiet observance of situations. If you have a friend you know and there's an activity you enjoy, you'll join in. If you don't have a friend or you don't like the activity, you'll just sit to the side, usually without emotion. You carry a book with you almost everywhere you go and will just lose yourself in a story if you have nothing else to do.



You still absolutely love to read and oftentimes go through one or two middle grade novels per day. (Yes, that is up to ~600 pages per day, depending on the day.) Our current method of obtaining books is that I go to the library about once a week, scoop piles of books off the shelves for you, bring them home, and you work your way through about 2/3 of them (you don't always love my choices). You still strongly prefer fantasy novels, but I've been pushing you into some sci-fi and mystery as I feel like I'm running out of fantasy choices.



You love taking apart electronics and learning about how they work, and you also love building and designing. Science fascinates you and you know a ton of scientific facts. We'll often find you watching science YouTube videos during your available screen time. You've been learning computer programming in Scratch, HTML, and other programming languages for fun and you like to write complicated programs that do all kinds of fun things. You also started teaching yourself linear algebra this spring by watching YouTube videos. Basically, your brain amazes me.



You also love doing non-educational/productive things with your screen time. You still love playing Minecraft and your level of expertise in the game kind of blows my mind. You are also a fantastic Mario Kart driver on the Switch. We have a hard time coming close to beating you in our family Grand Prix races.



Outside of the science/math/electronic side of things, you also write beautiful expressive poetry when you're feeling emotional or sad or you're given a writing assignment for school. The structure of poetry seems to come naturally to you; in fact, you once wrote a full song's worth of rhyming lyrics for Greyden's rock band in about 15 minutes. (I think it would have taken me hours.)

You are also still playing piano and have really been improving. We no longer make you play in recitals due to the stress they were causing to both you and us and your teacher, but we do continue to make you do lessons even when you put up a fight. Practicing and getting through difficult sections of songs can be a bit of a struggle (with tears and threats of quitting), but the outcome from the struggle always seems so worth it. The songs you choose and the way you play them is absolutely beautiful. Emotion just pours out of you when you play, and it's not uncommon for you to go to the piano when you are upset and let it all out on the keys.



Since you've never much enjoyed sports, this year we allowed you to quit both soccer and swim team. However, we do require that you still go along with us to the activities and also find other ways to exercise. We haven't started going back to the ninja warrior gym yet due to the pandemic, but we do hope to get you back into it as soon as we feel the time is right.

You still aren't a fan of school, although you've been grateful to do it from home this year with the ability to shut off your camera when you don't want others' eyes on you. You still get easily frustrated and caught up in self-defeating emotions when dealing with overwhelming assignments. And sometimes your struggles with anxiety and depression get much more intense and bleed over into our home lives. This past year has been very up and down in this regard, so you've been seeing your therapist every 2-3 weeks and we've been working with your teachers to find the best way to help you get through school.

You are still a rule-follower, cautious, and avoid most risks. When others want to do something that may backfire or cause injury, you will stubbornly say, "NOPE." When your daddy or I do see you doing something that seems dangerous or risky, we actually trust you with it, because we know that you will only do things if you are confident that you can succeed.



You love your family and close friends and seem to cherish time with both (which your dad and I will appreciate as long as we can get it!). You definitely show a hidden side of yourself when around people you're comfortable with (and if you're in the right mood), and you'll become super chatty and confident and start cracking jokes or throwing out sarcastic remarks. It's fun to see, and we don't always know when that side of you is going to show up.



You had a growth spurt over the last year and jumped from 24th percentile to 38th percentile, which is super exciting! It's been amazing to see how you've grown and changed over the last year. Your body structure and your mannerisms are looking more and more like a teenager instead of a young child. Your face is maturing, your hair is getting darker, and your voice is getting lower. You still prefer to keep your hair long and prefer to not wear your glasses if they're not necessary. You've lost a bagillion teeth in the last year, to the point where we weren't sure there were any baby teeth left. You recently pulled out another tooth while we were at the pool, and when your dad and I heard about it, our mutual reaction was to ask, "Was it a baby tooth or an adult tooth??" (Yes, we were very slightly concerned that you'd gotten in such a habit of pulling teeth out that you were now pulling out the ones you actually needed to keep.)

You and Greyden are still great friends and interact and play together super well. Of course you occasionally get upset with one another or yell at each other, and lately there has been more and more shoving and attempts to show physical dominance over the other. But all in all, you get along great. It still shocks me, since you seem to have so few interest in common and are basically complete opposite personalities, but somehow you make it work. And I will take it. :)



Alright I think that's it buddy. We're so proud of you and love you so much.

Love,
Mommy (and Daddy)

Tuesday, March 23, 2021

Krewson Lee: 11-Year-Old Interview

Krew is now 11 as of March 5th! We shook things up this year and did his interview outside. :) Take a watch below if you'd like to see his personality at age 11.

Past years' interviews are below, too, for your viewing pleasure if you're interested. :)

We love you Krew!!

Age 11:



Age 10:



Age 9:



Age 8:



Age 7:





Age 6:


Age 5:


Age 4:

Sunday, October 4, 2020

Greyden Roy at 8 Years Old

Hey Greyden Roy!!

You turned 8 years old on July 28th! I usually try to get these birthday posts written within two months of your birthday, but I missed it by just a couple days this year. :)



You are still our energetic, social, chatty, cup-half-full kid. Not much keeps your spirits down. If something upsets you or doesn't go your way, you very well might cry, but the tears are usually short-lived and you're laughing and cracking jokes again before long. I described you with the following words in the past two years' posts (6 years old and 7 years old), and they are still 100% true, which is pretty neat to see: "happy, joyful, goofy, excited, outgoing, determined, social, and energetic. You always look forward to every day, finding something in it that you expect to be fun or exciting. Every night during prayers you say, 'Dear God, thank you for today and thank you that it was so much fun...and please let us have a fun day tomorrow.' You cry easily when you have expectations and they aren't met, but you get over it quickly and are grinning again before long. Really, nothing keeps you down; you are always making lemonade out of lemons." These words still perfectly describe you. You even still pray that same prayer every night.



You are doing very well in school and have managed the at-home virtual schooling quite easily. You are signed up to do all of this year (second grade) at home due to the pandemic. You sure do miss seeing your friends and teachers though. We have a couple friends you do get to see in person, and I know you are so thankful for that. You really crave social interaction.



You continue to love all sports, but this has been a rough year for sports due to the pandemic. So far, two soccer seasons and a swim season have been cancelled. We will have to wait and see what happens with basketball in the winter. In the meantime, you have developed a strong interest in disc golf and have been playing it with your daddy very regularly. (We're very thankful to have found an outdoor socially-distanced sport for both you AND your dad. ;) ) Almost daily, I see you in the backyard practicing putting discs into our disc golf basket (thanks to our awesome neighbors who gave it to us!), and you have begun gathering quite the collection of discs.

You honestly haven't been playing with a ton of toys over the past six months, but when you do it's usually Pokemon cards, Bey Blades, or a game. You mostly spend your free time playing sports or doing something active in the playroom or outside. It's really strange to see you and Krew phasing out of having a lot of toys.



You are still doing weekly voice lessons and piano lessons, which we've fortunately been able to continue via Zoom. You sing around the house constantly (whenever you're not talking), and you switch among a ton of different songs and tunes. We'll even hear you singing the notes to songs that Krew has written on the piano. Oddly, despite your singing talent, love of attention, and desire to belt out a tune 24/7 at home, you do not like singing for other people. This is something we are trying to work on, to help you to be willing to perform. You did sing "You Had A Bad Day" at a mini showcase this past February and did so great, but you've been resistent since then to participate in any of the virtual showcases. Hopefully you'll give performing another try soon!



We are realizing more and more that you are not a very sensitive person, in contrast to some of the other people in your family. ;) For example, you rarely, if ever, get emotional or upset by a movie, and you typically show little reaction to bad or sad news. You're also not very sensitive to being cold or hot, to bright lights, etc. (We notice these things because we other three people in your family all have extreme sensitivities to either movies (me and Krew), materials (me, Krew, and Daddy), sounds (me, Krew, and Daddy), lights (Krew and Daddy), smells (me and Krew), temperatures (me), etc.) Not you. You have been known to wear shoes that give you blisters without complaint, rarely claim to be cold or tired, don't care whether there's bright light or darkness in your eyes, and can handle lots of chaos and sound. The other day we caught you wearing two different size sandals on your feet. When we pointed it out, you admitted you'd had no idea. Things just don't really bother you. I guess your one area of sensitivity is your food (and this makes sense, given your history with food allergies and so many food restrictions and diets). You do not like food that is too hot, even remotely spicy, or the wrong texture. You really do not like cinnamon (you says it's "spicy") or black pepper or too much garlic. There are also certain foods that you have an incredibly hard time swallowing and we will occasionally allow you to spit a bite in the trash when we realize it's going to be very hard for you to swallow. You are an incredibly slow eater, and 99% of the time you are the last one done at dinnertime. The rest of us often leave the table before you finish, otherwise we'd be sitting there for what seems like all night.



You love to talk nonstop and we often laugh about it. (This is sometimes part of the reason you are the last one done eating.) If there isn't much to talk about, you will narrarate what is happening around you. We found out recently that Krew has been having a hard time falling asleep at night because you talk to him and ask him so many questions after we put you two to bed. One morning Krew seemed more energetic, and your daddy commented on it. Krew replied, "Oh yeah, that's because Greyden stuck to my 'one question' rule last night." Lol.



You are busting with energy and excitement and hate to sleep (hence the keeping Krew awake at night with talking and questions). You still go through weeks where you'll come out of your room almost every night after we think we've gotten you tucked in. Your reasons for coming out of your room vary...sometimes you say your brain is racing, sometimes you tell us you have an ailment such as a toe cramp. (Yes, you claimed to have a toe cramp a couple weeks ago.) Just tonight after dinner you pronounced, "I wish we didn't need to sleep." When I asked you why, you replied, "Because it's boring!" Then Krew piped in, "Oh, but it makes you feel so refreshed!" Lol that's our boys in a nutshell. So opposite.



Speaking of Krew, you guys are still best buds. It really makes my heart so incredibly happy and grateful. You rarely fight with each other despite your differences. (And you have more differences than similarities, that's for sure!) Somehow, at least for now, you get along great and play together all the time. It is such a blessing. I don't know how long it will last, but your daddy and I will enjoy it as long as we can.



You have now lost six teeth (four on bottom, two on top) and you have another one that is very loose. You still appear to be about average for height and weight, but we'll find out at your 8-year checkup which is a week from now. Another thing I want to remember about you is that, for apparently more than two years now, you've done the same thing every night when I tell you 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. (Sometimes multiple times in a night if you're really trying to delay bedtime.) It brings so much happiness to my heart!



I always like to give a small update in these yearly posts regarding where we stand with your EoE. Right now we are in a holding pattern - you are not well enough to reintroduce any new foods, but you are not unhealthy enough to require us to remove any additional foods from your diet or to try new medications. In the last year, we first found out that rice did NOT trigger your EoE and you got to keep it in your diet, which was SO exciting! We now eat rice all the time. We also discovered that you do for sure react to green beans, so those are on your official allergen list. A follow-up endoscopy the end of this August showed that your esophagus didn't look visually great despite following a diet and treatment regimen that had it completely healthy back in December 2019. Fortunately, your biopsy numbers from the scope were not horrible, and so your GI said that we can wait a year before doing any more follow-up or food removals from your diet (assuming you do not become symptomatic). So that is a big relief! Right now you cannot have gluten, soy, dairy, eggs, beef, pork, or green beans, with pork and green beans being your two endoscopy-confirmed allergies. Just as was the case last year, you have not had any of your cyclic vomiting episodes in the past year. That means you have made it over two years without an episode!! This is such a relief. Maybe the cyclic vomiting syndrome is really in the past.

Alright Roy Boy, I think that's all for this year! We love you so much!!