11-7-14 Ive attempted to post five times today, so bear with me lol Yesterday morning, Steven was transferred to Blythedale Childrens Hospital for inpatient rehabilitation. While he is here, he will continue to receive treatment from the neurology, psychiatric and pediatric teams here, as well as intensive rehab and therapies, such as speech pathology, occupational and physical therapy. The main goal is to continue his recovery and make sure he is NMDA antibody-free (which is why he will return to MMC monthly for continued Rituximab and IVIg treatments), but we are hopeful that he will regain his basic functions with therapies and time. He is following what is expected so far: his level of alertness varies drastically from day to day, but his movement disorder has increased significantly, so he is mostly calm and has stayed that way for most of the past week. This is proof that treatment is working. The first goal is to get him to a place that he is more aware more often and eventually able to communicate, either through following commands, pointing to desired objects, people, etc and eventually and hopefully talking. The staff at BCH has been amazing so far. Today is day 2, so most of the last few days has involved meeting people and getting settled in. This place is huge and the TBI unit (Traumatic Brain Injury Unit) is towards the back of the facility, so you burn some good calories trying to get a meal lol. Steven was fitted for his wheelchair yesterday, which will help us to move him around the facility. Its a brand new chair in his favorite color, red, so it was like he was meant to have this chair. The advantage of him being in the TBI unit is that he has his own room, so we can keep the room a low stimulation environment, something he needs right now. He also has a special bed called a Posey bed, which gives him more freedom than the child crib he was in at MMC, while keeping him much safer. He seems to enjoy it, because he has slept more the last two days than he has in a while. Here are a few pictures from the last few days.
Posted on: Sat, 08 Nov 2014 00:22:26 +0000
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