When Time Crawls

It is really hard to get pictures of Kiya during therapy because I am not allowed to see her so I take them through the glass.  Honestly she is crying most of the time so I don't really want to capture it.  The therapists at Now I Can are taking pictures and video for their records and I will get a copy upon completion.  I am hoping to see huge progress by the end.  I cannot remember the last time a week took so long to be over.  Each day seems to drag on while I listen to sweet Kiya crying in another room.  Four hours is seriously a long time for anyone to workout.  Not to mention someone who has to work twice as hard to do the same task.  It has honestly been agonizing.  She gets a "break" at 10:00 which really just means 30 minutes in a stander.  I get to come in during that time and she begs me to hold her.  Of coarse I cant and when I leave her after the break she really starts crying because she knows she still has another 2 hours of intense therapy.  I keep asking Matt if we are doing the right thing because everything about it feels unnatural   Then again almost everything I have done since Kiya was born has been unnatural   Saying good by for three months in a hospital, not being allowed to hold her, surgeries, feeding through a tube, replacing a feeding tube, Botox injections, medical devices, therapies, etc.  I will say that her tone and range of motion is certainly better since she started the therapy.  She can also alternate her legs in mid air, and today she used her walker for longer than ever before.  She is also sitting with less pain and curvature in her back.  Matt is taking a turn tomorrow so that I can stare into space and worry about her from home.  Today I took poor Mason with me and he wanted to keep checking on Kiya and was mad that they were "hurting" her.  Most brothers can barely stomach their sisters, but Kiya has two built in bodyguards for brothers.  I am glad that programs such as this are available and that we are able to give Kiya the best.  I just wish something in this life could come "easy."

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.