June 4, 2009

Been a long time since the last update. Sorry for the delay. Shelby has been doing well since her return to rehab. Her hands are still very tight and contracted so OT has been difficult for her. They injected her left side with Botox a little less than a week ago to try and loosen her arms up. This has seemed to work fairly well as she has an increased range of motion on that side and she is definitely not as tight there. Today they began using electrical stimulation on her right side to see if that also would help. Not much to report because it is so premature but she seems to be responding well and does not complain of discomfort or pain. As you can see from the pic she has been given a computer. She has used our laptop from time-to-time but the one that she has been given has a text to speech feedback feature that has really helped a lot. Not only are we able to keep track of what she is saying she is able to express herself much better. Jenny and I have had some great conversations with her just in the past two days since she started using the laptop. Just one example of how Shelby is still Shelby, when she had neuropsych yesterday she mentioned something about someone hitting her. This obviously is something that neuropsych would be worried about and she knew that. Later when she was chatting with Jenny on the computer she typed something along the lines of “remember when I played that joke earlier saying that he hit me.” She has also typed that prior to this computer she has understood everything that we said she just couldn’t express herself very well because of her communication defects. She has expressed desire to go home and “just live with Hazel and Matt.” Speech has been difficult to notice a ton of changes because she still has the trach tube in. As soon as her lungs are clear and she is managing her secretions well, which will hopefully be soon, the doctors are going to start using smaller cuffless trachs so that she may be able to make sound. This would be good because when forced to breathe through her mouth she is making sounds. She is clearly doing much better at coordinating all the things required for her speech. She has been working on sitting up and maintaining her balance in PT and she is doing much better at this. She can adjust her body position and still keep her balance and that is very good to see. She is still scheduled for release on the 11th. It is unclear whether she will be extended again, but I will keep everyone updated when we know more. Until the next update just pray for more progress, for her and for me.


 

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  • 6/4/2009 7:29 PM Laurie Spangler wrote:
    Thanks so much for the update Matt! We have been "hungry" for information on Shelby. So happy to see the pictures and hear of her progress. The computer with the speech feature will be a godsend to her and you!! Please give her our love and tell her we miss her every day!! Laurie and the Novi Therapy Gang
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