It has been a busy week for Jared! Starting with some CT scans and shunt X-rays, he has a bit of hydrocephalus again so they are watching that very closely; some adjustments to his vp shunt were made today to help with the draining of the CSF.
Yesterday (Wednesday), he had eye surgery again to swap out the gold weight he had put in a couple weeks ago, for a heavier one and a tarsorrhaphy (eyelids are partially sewn together), to better protect his cornea.
On the other hand...or foot I should say, his AFOs came in, and they are fly! Tie-dye is Jared's favorite color. Now during his physical therapy sessions when he is working on walking and standing and strengthening his legs he gets to be out of the air casts and into his AFOs and shoes! He is doing great walking with the LiteGait, and his PT says that his left leg is doing a lot with his steps but the right leg is still needing some help.
He is continuing to work on his swallowing with speech therapy and we are praying BIG TIME for improvements in this area. As he is becoming more aware of his surroundings and his cognitive abilities we are also praying for speech or more ways to communicate with Jared. It is great that he is becoming more cognizant of things but this is also coming with some frustration on his end. A way of communication (ideally speech) would help alleviate some of that frustration.
His occupational therapists are noticing some good changes in his right arm from the casting, more straightening of it and loosening up of his fingers, so we are hoping that the Botox he had put in his arm is also going to contribute to that arm relaxing and getting put to work in his therapy sessions.
Continued Prayer Requests:
Continued Insurance coverage for here at BIR (with hopes for an extension on our tentative discharge date of 6/2).
Insurance coverage for the next step in rehab which would be "transitional post acute rehab"
Progressions with swallowing and communication
PATIENCE! For both Jared and myself!
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