Our daughter is now 19 years old and is still working on her recovery from an unnamed neuromuscular disorder that we were told about at her birth. Floppy infant syndrome was her diagnosis at birth, which is a term to describe reduced muscle tone and muscle weakness in infants. Seven symptoms are reduced muscle tone, muscle weakness, weak infant suck, feeble cry, lethargy, reduced spontaneous activity and loss head control. The Blog we created has show at different stages of her growth years the medical issues she went through and how the Doctors treated these issues. Here is an example of the most recent update,
As Chloe continues to work on her left shoulder with the advice of a physical therapist that uses an orthopedic approach to improve use of shoulders, scapulas and overall improved use of upper back, we are beginning to see some improvement but warned by the physical therapist it will take time.
Chloe is using certain machines without weights to activate use of all the left shoulder muscles correctly. With the use of correct shoulder muscles we are beginning to see improved control of headaches and ability to use less medication. That does not mean they are gone but catching them sooner and working through the headaches is steadily improving.
We hope to say this is the finally chapter but since birth, when she was diagnosed floppy infant that doctors stated was caused by some un-named neuromuscular disorder the possibility of more issues is always there. We will push ahead and have setbacks till we can stabilize this shoulder and glad the Doctor ordered extra pain medication when these setbacks happen.
Another issue we addressing with this neuromuscular disorder is Chloe’s ability to focus her eyes off mid-line. We rearranged the office area in which we moved the monitor slightly to the right. This made Chloe had to look to the right rather than straight ahead. With practice Chloe is steadily improving from 10 to 15 words a minute to her old speed of 25-30 words a minute but her accuracy is also improving too. This exercise is somehow improving her musical note recognition and being able to identify where they belong on a clef.
We want to take time to thank all the medical professionals, music therapists and the YMCA staff that all helped us get to this point in Chloe’s recovery!
To read about Chloe’s journey go to: www.jacqueline-discoverytrailblogspot.com