Now I Can

We started the Now I Can program today and it is already proving to be the challenge that other moms warned me of.  Today was the assessment so the session was only two hours as apposed to four.  Kiya has developed an understandable fear for new faces.  She can sniff a therapist from a mile away and she was onto this group from the start.  She also really hates being touched by people she doesn't know or feels threatened by.  I dont think she was really hurt today so much as overwhelmed and afraid.  She screamed the entire 2 hours and has several bouts of emisis.  By the end she seemed to warm up a bit to the therapists so I hope a growing relationship with them will increase her trust and help her through the program.  Today they wanted me to be in the room for the evaluation.  Kiya cried my name for me to save her.  This has happened so many times including when I have to hold her down for Botox injections.  I have done so many unnatural things as her mother and my internalization of them can be overwhelming.  With every new therapy and procedure I try to make sense and find peace.  I am definitely not there yet.  Right now I feel numb and detached.  These therapists are obviously very skilled and identified some things right off that I hadn't really understood.  Her clonus in her feet is not only a sign of neurological damage, but also a response to the curling in her toes which she does as a  "survival" reflex.  Apparently there are reflexes that you have in infancy and then as you grow into adulthood. Because Kiya was not able to develop the mature reflexes they layered upon the primitive reflexes and this contributes to her tone and spastitcity.  Even after having Botox injections a week ago the therapists were surprised how tight her legs were.  Things that should be so simple have become so complex.  Although I know this is going to be an extremely challenging three weeks for Kiya I am excited for the results and to be working with an organization that specializes in  improving mobility.  I will post more on what they do as time progresses.  A lot of repetition is used to create the functional skills that she currently doesn't have.  Tomorrow I wont be allowed in the room.  As much  as I want to let Kiya know that I am there for her, I dont want her wondering why I am not saving her.  We are praying that she will be able to tolerate the therapy and that she will gain new skills.