Elias had his appt for adaptive phys med the last week of September. Dr. Batley was wonderful and the 2 hours we were there being assessed and evaluated were very well spent. Elias was weighed and measured in almost every since angle imaginable. His growth is awesome although he is still quite skinny for his height (about 3rd percentile in the weight-for-length category). He is 40.5" tall and 32 lbs. Such a long, long way from the micropreemie of years past. They tested his reflexes, walking, running, sitting, standing, etc. Elias thought most of the appt was playtime and couldn't believe that he was actually able to take his shoes off and RUN in a doctor's office WITHOUT shoes on!! The only portion of his assessment that involved a few moans and groans was the stretching and tone checking.
Overall things look fairly good. Dr. Batley found many soft signs of cerebral palsy. Elias has clonus more in his left leg than his right. His left leg is also tighter than his right and tends to drag when he gets really tired. His tone is hypertonic throughout with hypotonia in his trunk. Although his ankles are loose, Elias tends to toe walk about 80% of the time and that is a large red flag for them. Dr. Batley finally was able to tell us why Eli fall randomly and unexpected throughout the day as well. His IT Bands in his legs are tight. These are extremely hard to stretch but we have been trained to do it properly and need to stretch him 3 times a day for the next 4 months. When the IT band is tight is causes the leg to give out suddenly when it is tired (which Eli's legs get tired as the day goes on). This explains why our little splats so much and then bounces right back up again.
We are not going to get AFOs or DFOs (ankle or leg braces) at this time. Dr. Batley said that for braces to be beneficial for Elias we would have to brace all the way up to his hips. Bracing to that extent would do more harm than good to his mobility so we will hold off for now. She said that if his falling gets worse and he is injuring himself or needing stitches for falls, we will reconsider bracing at that time.
Dr. Bately held off on giving Elias an "official" diagnosis of spastic hemiplegia cerebral palsy at this visit. She said he has so many soft signs including the ones mentioned above and his aspiration of liquids, low mouth tone, and fine motor delay. We will see her again in January to reassess his progress but his treatment and therapy will not change regardless of diagnosis. He is still our amazing Elias who is a spunky, rambuncious, crazy three year old that runs us WILD every day.