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... ;) )
