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.
Monday, May 13, 2013
Friday, April 19, 2013
Tuesday, April 9, 2013
We are trying out a new walker with Kiya. Right now she can't actually walk in it, but can use it to steady herself. I am hoping after we do Now I Can she will have the strength and muscle memory to use it.
We went to Planet Play for the first time and had so much fun!
I was so happy that they had a little horse just perfect for Kiya to ride. Matt and I took shifts because she wanted to ride it the entire time. I have nightmares about spinning horses!
Miss Kiya laying back and enjoying the ride.
Dont ask me why Mason wanted to pose as a lady
Lex and Grandpa enjoyed a nice round of miniature golf.
The battle ensues. What is it with men?
Later we visit Bridal Falls to enjoy the outdoors. Lex is intrigued by a big bolder.
Here is a picture of Lex showing me the iron deposits on another rock
Lex and Mason got to feed the fish at the base of the waterfall
Kiya is obsessed with dogs! I really hope she doesn't beg Matt and I for one someday.
Lex and I climbed really high up the waterfall. He is getting to be quite the mountain (science) man.
What a wonderful time!
We went to Planet Play for the first time and had so much fun!
I was so happy that they had a little horse just perfect for Kiya to ride. Matt and I took shifts because she wanted to ride it the entire time. I have nightmares about spinning horses!
Miss Kiya laying back and enjoying the ride.
Dont ask me why Mason wanted to pose as a lady
Lex and Grandpa enjoyed a nice round of miniature golf.
The battle ensues. What is it with men?
Later we visit Bridal Falls to enjoy the outdoors. Lex is intrigued by a big bolder.
Here is a picture of Lex showing me the iron deposits on another rock
Lex and Mason got to feed the fish at the base of the waterfall
Kiya is obsessed with dogs! I really hope she doesn't beg Matt and I for one someday.
Lex and I climbed really high up the waterfall. He is getting to be quite the mountain (science) man.
What a wonderful time!
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