Today Eli had his appt to get his AFO's refitted. He agrees that they aren't working at all and that Eli's muscles have definitely changed. He was unsure what to do and consulted multiple other people to try and get some ideas. Eli's left leg/ankle/foot now show hypertonia(over high muscle tone) and his right leg/ankle/foot now show hypotonia(low muscle tone). He made some adjustments to the AFO's to see if that will help his feet stay in them a bit more. He says that Eli is a puzzle and he's not really sure what to do next if this doesn't work. He also doesn't have any suggestions on the legs turning out and the massive frogging weakness in the hips. He agrees that it all sounds neurological.
Eli has again been exhausted today. Which isn't good because tomorrow is his EEG. He has to stay up tonight until 10pm and then he has to get up tomorrow morning at 4am. Not going to be fun for a kiddo like Eli who already has major issues with low energy.
After his EEG he has an appt with his new pulmonolgist. I will update more once I know more.