Ahhh-- I have a nice quite moment to sit down and update you:) I don't get many of these- and I'm not sure how long it will last so here it goes--
The ankle braces are a "no go" now. They were great the first few days and then Bubba modified his walk and started walking with both feet faced inward (pigeon toed). I'm working with the ortho and his physical therapist to see were to go from here. He now thinks he can run, but his upper half seems to go faster than his bottom half leading to a lot more falls and owies:)!
He had a rough weekend. He was really constipated--again. There seems to be a pattern of this now. Long story short- he wasn't digesting his food properly and stomach content came out of his feeding tube (tons of it) even though he hadn't eaten in over 2 hours (just a few small cookies at that!) He had a bowel blockage. After several doctor calls we where able to resolve the issue in the next 3 days. He was on magnesium citrate which gave him diarrhea that just went around the blockage. We also had to give him 3 days of suppositories and extra fiber/miralax. All seems okay now, but he wasn't a happy camper at all! We've learned since then that his flow rate on his pump was way to high and his formula w/fiber is hard on his tummy and causes constipation. We now add water to the formula, slowed the rate WAY down and are slowly introducing extra fiber (in green smoothies/prune juice) via tube. One thing I did learn in class is not to introduce fiber to quickly or it will cause abdominal pain.
Ryder's stoma (area around G-tube) became really irritated. It was almost like a horrible, raw, blistered diaper rash. I will skip the reason for how it became like this--since I know it was a lesson learned (ugh!) Anyways, that is now cleared up and looking good. Ryder is trying to adjust to a continual tube feeding during naps and bed time. He likes to sleep on his tummy, but the tube gets kinked and the alarm beeps.
I'm looking into music therapy for Ryder, which I know he'd enjoy. It cost a lot out of pocket though so I'm still looking for other programs that may benifit him. Next month, we will start the transition into preschool! I still have to chuckle when I picture my little man waddling into a classroom with a backpack on--haha!!