Taylor: Getting organized

Wednesday, September 16, 2009

Getting organized

I've been trying to get all my pictures in photo albums, I feel like I'm nesting or something ;)
I guess I'm preparing for the worst and hoping for the best for Taylor's recovery. The doctor says recovery will be "hell" how do you prepare yourself for that?
This is one of my favorite pictures of Tay while he was still walking, he was 4 months shy of 5 years old.

5 comments:

Noah And Kai said...: So cute! We used to love having him come down and play with us when we lived in those apartments! He's such a doll!; September 16, 2009 at 6:37 PM
Misty said...: He is a handsome kid... I think so anyway :); September 16, 2009 at 6:45 PM
Misty said...: It seems just like yesterday Tay was hanging out with you guys and playing with Josh's Star Wars pez.lol; September 16, 2009 at 7:14 PM
Judy said...: Oh, that's about when I still got to play with you guys. I just loved being with you and your kids. They were so adorable!; September 18, 2009 at 10:35 PM
Misty said...: We've missed you too Judy!; September 29, 2009 at 12:31 PM

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Taylor has Duchenne muscular dystrophy (DMD) it's a severe recessive X-linked form of muscular dystrophy characterized by rapid progression of muscle degeneration, eventually leading to loss of ambulation and death. This affliction affects one in 3500 males, making it the most prevalent of muscular dystrophies. In general, only males are afflicted, though females can be carriers. The disorder is caused by a mutation in the gene DMD, located in humans on the X chromosome (Xp21). The DMD gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane. Symptoms usually appear in male children before age 6 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from early teens to age mid 30s. There have been reports of DMD patients surviving past the age of 40 and even 50.

Taylor

Wednesday, September 16, 2009

Getting organized

5 comments:

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