How much recovery can we get?

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This is Chloe older cousin with her at Thanksgiving. Chloe could not control her face to smile on demand. She either had closed eyes or a frown on her face. This is one of the major improvements since she has been on these medications and using her Tens Unit.

Is it Pain or Fear that if she moves her left side wrong the pain will come.

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  Second session with  fitness trainer!

How could we tell if Chloe was in pain or if she is just scared that her movement of her left side would cause pain. Chloe for years she would hold her upper arm tight against her side to and pivot her arm out at the elbow just using her forearm and hand away from her body. No weight, or excessive use of arms over her head the goal is to use her arm in space away from her body. Majority of activities only as high as shoulder level. In this last session we saw a lot of fear and we need to encourage her and build her confidence so we can report back to the  Neurologist what we see. We still are wondering how much more we might do and not stress the left side of her body and neck.

Nerve Headaches

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Chloe woke up this morning complaining of pain right above her eyebrow and her left eye had sparks or yellowish thing floating in it. We tried the "Tens unit" putting two probes on each side of her forehead. After 30 minute treatment Chloe said her left eye cleared up and her forehead was more manageable pain wise. This is her about 2 hours after. Amazing new gadgets to help headaches

How Far We Have Come!

                                       
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 The neurologist who saw Chloe on July 1,1993 described her this way. I saw Chloe for evaluation of developmental delays and hypotonia. Early milestones were markedly delayed. She did ,however, sit up by 7 months and has not crawled yet.  On her abdomen, she pulls to her hands, but does not attempt crawling. When she started physical therapy, it was noted that the left side was weaker but showed improvement with therapy. Currently, she moves around the room by scooting. On the other hand , she appears to be very verbal and repeats several words and uses 4 or 5 words spontaneously..

Fast forward to today, Chloe is being treated for a nerve issue on her left side of her neck ,left shoulder and tinnitus in her left ear .She is being treated with two antidepressants one that replenishes the serotonin in her body  and the other antidepressant  shrinks swollen nerve ending.  Her complaint was headaches that caused her to collapse on the floor in pain. She still has headaches but they are much less intense and we are beginning to get her to describe them so we can report back to her neurologist. Chloe is 5 feet 9 inches and has a T-shaped body which aggravates this condition also.

Our daughter at birth was diagnosed a floppy infant at birth. We would like to share how we got to this point and what we are working on right now. Chloe is now trying to figure out what job would work with her health issues .

Please let us know if we could share our story with other families who are trying to understand their child’s health issues.

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