3.21 Day and Gabe updates 2021

Tomorrow is Down syndrome awareness day. 3/21 = 3 copies of the 21st chromosome. I thought I'd share a big update on all things Gabe. I believe knowledge is power and leads to greater understanding, so I appreciate everyone reading and supporting our boy. We moved a year ago to a new neighborhood to get settled into a new school system that was smaller and the kids could grow with. Our house has had a few improvements over the year and is really feeling like home. We love our neighbohood. People are always out walking, waving, playing, gardening. COVID has made it hard to meet people, but I think overtime, we'll find a great sense of community here. Cardiology: Gabe's repaired AVSD is still looking good. Hit mitral and tricuspid valve leak is still just mild/moderate so we will continue with the annual Echo, EKG and cardiology appointment. Pulmonary: Gabe still has moderate sleep apnea. His oxygen levels drop a little low, but not scary low. He is tolerating wearing his cpap, but finding the right mask fit that works with a flat nasal bridge is challenging. He's averaging 7-8 hours of wear time/night and having about 4-5 apneas per hour (mild to moderate range). He doesn't seem excessively tired. He wakes up 1-2 times/night to get a drink and a quick mask break, but goes back pretty well. ENT: Gabe has small ears which is common in Down syndrome. They usually have to clean out wax in his ears for him to pass a hearing test. We have to hold him down to keep him still to do this which is getting harder. He had a little dip down in his left ear on the hearing test over the summer, but not to the point of concern. Gabe's airway has gotten wider as he has grown. He can still have some reactive airway wheezing, so he is on a steroid inhaler, but it's alot less scary than when he was younger. He used to crash and burn so quickly with that narrow floppy airway, requiring lots of nebulizers and steroids, and retracted breathing that would lead to oxygen and hospital stays. I'm happy those days seem to be behind us. Opthalmology: Gabe is not a fan of glasses. We're still working on it. We started putting an eye drop of atropine in his right eye once a week to intentionally make it blurry so he would have to focus his left eye more. His left eye is weaker. The eye drop dialates his eye, so often have to warn people that his pupils are not equal, but he's okay. Feeding: Gabe still doesn't love eating, but it's gotten so much better than it once was. He loves chips, fries, and cheesecake. When we are eating our normal dinner at the house, he feeds himself pretty well with the occasional reminder. If we eat out or have people over (pre-Covid), he tends to get more distracted and requires more assistance. I'm hoping for additional updates to share later this spring :) Dermatology: Gabe has psoriasis that pops up from time to time on his scalp. Luckly we finally figured out what it was and have some cream to help. Gabe also has alopecia. He has some thinning spots, but a few bald patches from time to time. Luckily, he responds really well to steroid cream for hair regrowth. Down syndrome has lots of autoimmune stuff that can come with it - ex: celiac disease and thyroid disease are fairly common. Leukemia and Type 1 diabetes, while less common, are still more prevelant with individuals who have DS than the average population. Fortunately the hair loss and psoriasis are minor autoimmune reactions compared to the others. Gabe also has periorifacial dermatitis. He basically gets a rash over the summer that lasts into the fall. The rash is typically around his mouth and nose. It's often flared up from sweat, sunscreen, facemask reactions and requires another cream to help with that. As skin oils increase, his sensitive skin can definitely flare. Dental: His teeth are a crowded mess. Braces would be hard to tolerate for him at this point, so we'll continue to work on sensory issues and teeth brushing and maybe we can work up to it one day. Gross motor skills: Gabe is still wearing foot orthotics to help with foot alignment. His biggest issues are endurance. His poor muscle tone wears him out quickly. He would definitely prefer to sit than stand. We're trying to keep him on his feet and develop stronger leg muscles. He is continuing to take an adapted dance class which he really likes. Swim acclamation class has been on hold for the past year. I'm hoping that it will start up again soon. We had a few PT appointments over the summer and are hoping to set up a few more appointments soon. Fine motor skills: We've seen some great OT improvement this fall. Gabe is doing much better with buttons. He is more willing to write when using a styllus. We're currently working on some sensory things - washing his hair, coming his hair are definitely not his favorite things. We've made good progress with teeth brushing. Speech skills: Speech therapy via telehealth was not really productive with Gabe. He also was particpating less and less in person, often shutting down. Covid has really affected Gabe's speech skills. He is still stuttering, but is also having trouble finding words and getting frustrated more. We're hoping to start up speech again soon with psychology co-treating. We're currently on a waiting list. I feel like if he makes some progress with speech like he has recently with OT, his behavior and overall happiness will greatly improve. We've had virtual playdates with friends - donut decorating, cookie decorating, pizza making that have been pretty successful in getting him to interact and talk some. Behavior: I feel like Covid has been hard on everyones behavior and mood...Gabe included. We're seeing Gabe getting a little more agressive. He is hitting some and throwing things. I think he is either frustrated, overwhelmed, or testosterone is intense. We are seeing some great days at school, but of recent, more hard days. It's almost like a reactionary response to demands. He is definitely showing some escape behavior towards work demands and attention seeking behavior to peers. When you have speech delays, it's sometimes easier to hit or throw something to get attention, especially when you're trying to make friends. We've been working really hard on this. School has been very open to suggestions, taking data, giving breaks, etc. We're working closely with our behavior interventionalist. It think there is some sensory pieces too. When you're at home for so long, it can be sensory overload when you start back to school full time. It's an odd balance of showing him some grace due to covid, while teaching him appropriate behavior and expectations. Also, lesson learned, the first 30 min. of Home Along (which Gabe loves) is full of the words jerk, shut up, and dummy. When your kid likes to quote shows, it can be a bad combo. Gabe is 11 - he's still cute, but we are definitley out of the cute years and into the tween years. We are trying to reinforce privacy and boundaries as hormones begin. It's exciting and challenging to watch him grow. It is comforting to know that we have all the resources in place and lots of support to give him all the opportunity to be his best self. Gabe's into baseball, his tree swing, dinosaurs, books, babies, dogs, and Blippi (Lord help us). He gives the best hugs. He has some awesome dance moves. He says I love you every night when I tell him goodnight. Never give up on Gabe. And as for Alyssa - she's a gem. She has made friends pretty easily and adjusted extremely well to school. Covid was hard on our social butterfly, but she showed great resiliency through it all. She definiely wants to impress people. She's had to learn some hard lessons on what is a lie versus "just joking". She's also entering tween status with some smart comments here and there, but she's a really great kid with a heart of gold. She loves all thing gymnastics, ice skating, performing, glitter, and bike riding. She's really smart and loves science. I find random concoctions in my freezer that are "science experiments". Her and Gabe help each other in amazing ways. They kinda have a twin connection. Here's to spring and brighter days ahead. I'm exciting to see more friends and family this year. Happy world Down syndrome day tomorrow! Wear those crazy socks!