Matson

[Guest guest]

I wanted to share this from my friend Steph's Caring Bridge page for her very brave, very adorable son Matson. Casting didn't work out for Matson because of rare complications. Steph writes beautifully and I know that she wants Matson's journey to help other children and families. This was very informative, as well as moving to me. It reminds me why we will do casting as long as it is working for Bex, and increases my gratitude for and ISOP, if that is possible:From Steph:"One of the main problems with infantile scoliosis is the growth factor....as

the kids grow, their curves grow, thus causing a chain reaction of

deformity and organ compromise. With adolescent and adult scoliosis

patients have reached their maximum growth potential or close to it,

their organs have fully developed, and spinal fusion is usually the

answer for correcting curves and maintaining them throughout their

lifetime. Dealing with these little bodies and still developing organs

is a delicate matter. As the mother I spoke to last night said this is

a life altering disease, treatment plan, and a very long road. She was

very candid in providing me the details of surgery, recovery, rod

lengthenings, and complications.

She explained that the initial surgery and recovery period were the

worst days of all their lives. Their daughter in excruciating pain,

unable to move or walk, and so confused. She explained that they have

had 4 rods break in her body since and then subsequently

surgically replaced. She has had a very severe infection near the

hardware at the top of her spine and will be on antibiotics for the

next 6 months. During one lengthening surgery, the tension on the

spinal cord was too tight and she was unable to walk and then had to go

back into surgery to release some of the tension. Their daughter has

had 12 surgeries on her spine and she will be 7 next month. But through

it all she said they just keep reminding themselves that no matter how

hard it is, if they hadn't gone through all this and continue to go

through it, their daughter wouldn't be here at all as her lungs would

have already been compromised. All about the perspective!"From Heidi-Please send good thoughts and if you pray, please add Matson to your prayers!!! He clearly has the most loving mother and family. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)