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)