Update .. Riley had an appt Monday with a fluency specialist at Children’s Hospital of Philadelphia. Reason being what seemed to be a stutter had started about a year ago. We waited a little to see if it would play it self out but it didn’t. That being said we learned that Riley doesn’t actually have a stutter but an issue with fluency. Disfluency. So we have been given a exercise to do at home everyday over the next 5 weeks. After the 5 weeks we’ll review Riley’s progress and go from there.
While at CHOP we picked up a case of high calorie drinks from lung transplant. Since we were there we had Riley jump on the scale. He is now down to 54lbs from 57 the week of Thanksgiving. Not sure why he is still losing weight. Being that we were with the social worker picking up drinks and not there for an actual appt we didn’t talk to anyone about his weight. Debby (SW) is going to pass it along to Allison (nutritionist) and Dr Goldfarb. Thankfully in 2 weeks Riley has an appt with heart transplant and it surely will be a topic of conversation at that time.
For now we will work on Riley’s fluency and get him drinking some high calorie drinks. Which are meant to eventually replace his overnight feeds. Fingers crossed .. ❤