Very proud of Mason.....this was a first for him!
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OUR STORY
"Our Story" as presented at AMC Convention 2008
Diagnoses
Our Family
Collin Edward
Haley Grace
Mason Best
Haley's Medical Info
- Diagnosis - Multiple Pterygium Syndrome (Escobar Variant), a recessive genetic form of Arthrogryposis Multiplex Congenita (AMC)
- Bilateral Vertical Talus - foot correction surgery done at 6 months of age after 22 weeks of casting. After severe relapse of the foot, a complete reconstruction and removal of the navicular bone was done in Seattle, November 2010
- Dislocated hip & knee flexion contractures - On Nov. 5th, 2006, Haley had a total hip reconstruction done. A socket was created by doing a pelvic osteotomy and filling in a wedge of donor bone, femural osteotomy with insertion of screws/plate, derotation, and hamstring lengthening on both legs to straighten them. Everything was successful, though she has not gained back all of her range she had prior to surgery which has left her unable to sit on the floor or to bend her left leg very much.....as a result, her most recent fall (March 20th) left her with a broken femur right above the knee.
- Scoliosis - has an "S" curve of the spine, however, the curve measurements get better at each follow-up. Currently has an upper curve in the low 20's and lower curve in the teens.
- Finger contractures/collapsed thumbs - surgery was done in the Spring of 2011 to reset the thumb joint and create a deeper web space, giving her a wider grasp and better positioning.
- Eventrated/paralyzed diaphragm - plication done at 5 months of age to pull down diaphragm
- Submucous cleft palate - soft palate is not closing off causing hyper nasal speech. Sleep study scheduled for April 2010 did not show any respiratory issues. Surgery for repair is scheduled for December 12, 2011
- Tethered Spinal Cord - release surgery was a success (7/18/2007) - MRI done on June 25th showed her cord was tethered and her spinal column didn't completely close up (spina bifida occulta) - testing done Jan '08 showed no damage done to the nerves regarding bowel/bladder function.
- Other features present in relation to Escobar - short/webbed neck, small stature, low set ears
Mason's Medical Updates
- Diagnosis - Multiple Pterygium Syndrome (Escobar Variant), a recessive genetic form of Arthrogryposis Multiplex Congenita (AMC).
- Hyperextended left leg - possible reconstruction of fascia/tendons to help with side to side flexibility
- Right knee contracture - quadricep muscle developed turning down the side of his leg and functioning more like a hamstring. Knee cap is located on the outside of the leg as a result. Reconstruction done in Seattle in November 2010, straightening the leg.
- Dislocated left hip - his socket is identical to Haley's. Surgery was done in Seattle in November 2010, identical surgery to Haley's
- Vertical talus - corrective surgery done at 3 months after 5 weeks of casting. After signs of relapse, additional surgery done in Seattle, November 2010, to remove the navicular bone and straighten foot.
- Finger contractures - tendon releases done on both hands and minor lengthening on right forearm. Tendon transfers to both thumbs done as well. He now has fully functioning hands. Surgeries done in April & Sept of 2009
- Scoliosis - "S" curve in the low 30's in the upper spine and low 20's in the lower spine
- Tethered Spinal Cord - release done Sept. 2009
- Eventrated right diaphragm - plication done on May 2, 2008 which gave him the ability to get off supplemental oxygen.
- Inguinal hernia/undescended testes - right side corrected Feb 2009 - left side corrected Feb 2010
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1 comments:
That is incredible! Go, Mason, go!
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