Thursday, May 16, 2013

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."

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