We've been living it up this summer. Gabe (and the rest of our family) have been keeping busy. Gabe has some amazing respite sitters who have taken him to parks, libraries, play centers, climbing areas, museums, and all around town. He has had play dates at Dave & Buster's and Reds Games. This week he was invited by a friend to Vacation Bible School. We've been on vacation to Dollywood and Daytona. We're soaking it up.
Gabe turned 14 last week. He still loves all things baseball and Toy Story. He continues to be an aficionado of potato chips and dinosaur species. He loves cheeseburgers and fart jokes and storytime and singalongs. He loves playing doctor and fixing toys - he's a real life Doc McStuffins. Dogs and babies are #1 and he's amazingly gentle when they're involved.
He is currently taking a break from speech. He recently got a talk assist device. We're trying to load schedules for morning and nighttime routine onto the device to fade out our verbal prompts and assistance. It can also help with understanding him if he's not annunciating well. We finished up a really long PT block. We have daily activities to work on to help his ankles. He's improved a great deal with his heel cord tightness. It's now more about hip strengthening. As for his scoliosis, surgery is needed to fix that, but we are building endurance for sure. Gabe walks around the block daily. He's gotten up to a mile on an incline on the treadmill and is gaining stamina. It's really nice to see this progress. We continue to push OT activities to help with independence. He is sifting through kinetic sand and puddy to find tiny beads. He is using tongs to sort beads. Lots of hand manipulation to eventually help with snaps and buckles. He's about to outgrow stretchy waste bands so he needs to get better at fasteners.
He's learning concepts of money and buying things at the store (with us prompting him and coaching). He still loves to read. The Storybook series books have been good for him. He loves the Toy Story one and is also getting into the superheroes one. The main idea of stories and characters and setting can be a bit tricky, but he usually gets the concept. He still loves Cocomelon, but mainly just the doctor song. He plays along with all of his doctor tools for medical play. I think it's his way of processing things. He folds some laundry, puts dishes away, and picks up a few sticks in the yard here and there. Compliance is still an issue, but if we make a list and tell him what to do and give him time to do it, he generally complies. This past weekend we told Gabe he needed to eat breakfast, get ready for his day and put his laundry away. It took him an hour, but he did it completely independently. Baby steps forward add up to giant leaps.
As for Gabe's upcoming surgery, we've been working hard at preparing. The walking and stamina are a big part. We've been working with Gabe during behavior therapy at labeling feelings. He looks at pictures to identify if the person in the picture is brave, hurt, sick, scared. Increasing this vocabulary with him will help with language post surgery. As I said, Gabe loves playing doctor. He's definitely working through things with medical play. He had his labs drawn and everything looked good. About 80% of kids Gabe's age are Vit. D deficient - not Gabe! His love of milk is helping him out. His EKG to prep for surgery was unchanged since Dec. so his heart is good to go. We met with a dietitian who gave us some really good tips to work on protein, Vit. D, and calcium during recovery. Red meat, beans, dairy, fruits and veggies for fiber - I have meals planned out. We watched a video and read the manual on spinal surgery to know what to expect. He will be in ICU after surgery. His pulmonary doctor put a plan together to keep him ventilated till stable in ICU. At that point he will be extubated to his CPAP machine. They put special sensors along his spine during surgery to make sure his spinal cord remains safe as they place the rods and secure his spine. Because he will be face down during the surgery, they said to expect facial swelling. It will be hard seeing him in ICU, but being prepared is helpful. He will be in the hospital for 5ish days depending on his movement, eating, and bowels. He will come home on different medications to help with his comfort. He will need to sit in a sturdy chair and walk around every hour to prevent stiffness. He will also need to eat small frequent meals/snacks to prevent nausea and help with energy. Parents who have been through this before compare it to having a newborn in terms of schedule. After 2-3 weeks though, things should get easier. After 4-6 weeks he will hopefully be able to go to school for half days and work up his endurance from there. After a few months he'll hopefully be pain free with perfect posture.
Back to school is soon approaching for my 7th grader. He will be in school for 2 weeks before surgery time. He will also be starting extended school year in 2 weeks. Summer always goes so fast. In the meantime, we'll keep soaking it in and enjoy being out and about since the fall may have us at home more.
I think 14 years old will be fabulous, even through a little bit of hard.
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