The last month has flown by with therapies, doctor appointments, and play dates. The boys have been enjoying attending a community playgroup on Saturdays, we’ve made some library trips, have been attending church, and even went to a sensory carnival Frankie was invited to.
Frankie’s GI doctor had us change his 24hr continuous feeds to 16 and we’ve also now increased the total volume per day from 72 to 90. He’s done well tolerating the volume increase and the shortened time in which its delivered (receiving 6ml per hour instead of 3). He gets a hypoallergenic formula mixed with an ‘oral rehydration solution’. Right now, that’s Pedialyte but I’m working on finding another option that’s more cost effective and nutritious. Pedialyte mostly comes in large bottles or packets to be mixed with 16 fluid ounces of water. We only use 18ml of that mixture per day and Pedialyte expires in 48 hrs after opening so a lot is being wasted, and that stuff isn’t cheap (or covered by insurance). I’ve been told I can make a broth solution as an alternative so I’m going to try that out. Yummy…broth mixed with formula!
Henry is so close to walking. It seems like he’s just lacking a little confidence to let go of our hands or furniture and take a step by himself. We expect him to do it any day now. Frankie is getting closer every day to sitting independently. His therapy team and nursing are working so hard to get him there. We can tell he just wants to move and sitting up by himself is the first step to opening all the doors to mobility. I got him a little walker he practices standing in and the tray is in just the right spot for him to play with toys and bang his maracas and bells on. We’re working on getting him a new chair that will replace the baby bouncer he’s been using and loves, but has outgrown. We can hardly get the harness buckled. His physical therapist says eventually we will get him a little gait trainer to scoot around with.
We’re excited to have some cooler weather so the boys can enjoy some stroller walks. Anything but playing in the water outside has been just too hot to do. We’re also planning to take Frankie to the library at the deaf and blind school to check out ‘switch toys’ for him. Our local library doesn’t have many options that Frankie can enjoy so we were happy to find this resource for him.
As the seasons change, we’re seeing a spike in COVID, RSV, and other viruses in our area. I’m stocking up on antimicrobial and disinfecting products to do everything we can to keep Frankie out of the hospital for respiratory distress due to illness. If you’d like to help, here’s Frankie’s gift list. We go through a lot of hand sanitizer, hand soap, disinfecting wipes, dish soap, laundry detergent & sanitizer, gloves, and disinfectants.
Your encouragement, prayers, and support mean more to us than words can express. We’re grateful for this community that continues to lift our family up. 💙
Amanda
