AVERY'S JOURNEY
Believe in me
Little Miss Magic
Avery is our "little miss magic".
She has been through so much, but continues to be a content and feisty toddler. She is truly inspiring.
Surgeries
February 2, 2007- Avery had her first surgery when she was two months old. She had a bilateral Achilles tenotomy. The doctor cut her Achilles tendon in an attempt to correct her club feet. After the tenotomy she was serial casted for several weeks. Unfortunately, this surgery and casting was not successful.
March 14, 2007- At four months of age Avery had her second surgery. It was an attempted closed hip reduction. Avery also had an adductor tenotomy during this surgery, which means the doctor cut the tendon right by her groin in an attempt to loosen up her hip. This surgery was an attempt to put her dislocated left hip back into place. This surgery was also unsuccessful.
July 18, 2007- Avery had her third surgery when she was seven months old. She had a bilateral open Achilles tenotomy. This surgery was basically a repeat of her first surgery where the doctor cut her Achilles tendon, but with a larger incision and was once again followed with several weeks of serial casting. This surgery also did not have a successful outcome.
October 24, 2007- When Avery was 10 months old she had her fourth surgery. This was an open hip reduction. This surgery was her most invasive and most involved surgery. She was in the operating room for almost 5 hours. This surgery was successful and it did put her left hip back into place. After the surgery, Avery had to wear a body cast called a Spica cast for 10 weeks. While in the Spica cast Avery suffered a broken tibia (foot) and broken femur (leg). The doctors believe this was caused due to osteoporosis and that the osteoporosis was brought on because Avery had never beared weight before. After 10 weeks in the Spica cast she was put in a Scottish rite brace for one month.
February 18, 2007- Avery traveled to New York for her fifth surgery when she was 15 months old. She had another bilateral Achilles tenotomy followed by 8 weeks of (correctly done) Ponseti serial casts. She suffered another tibia fractured during the casting. After only 8 weeks of casting Avery's feet were finally flat!!! Here are some pictures of Avery's feet before traveling to New York, during casting and after.
May 11, 2009- Avery traveled to the University of Michigan Mott's Children's Hospital for her sixth surgery. This surgery consisted of a Myringotomy & Tympanostomy Tubes (ear tubes). Avery had this surgery due to fluid and a slight hearing loss in her left ear and also because her left mastoid (temporal) bone has not formed properly.
Pre-Op Post-Op
(It's amazing what a little Versed and anaesthesia will do)
Castings- Avery has been casted for her club feet numerous times. She was casted basically for the first 17 months of her life. After 8 months out of the long leg casts, in December 2008 Avery had a regression of her feet and was re-casted for 8 weeks. Here are a few pictures during this time 
first set of casts soaking casts off one cast off no more casts!!!
Avery also experienced another regression and was recasted starting June 26, 2009 until August 28, 2009.
Here are some pictures...
1st cast 2nd cast 3rd cast 4th cast
Bracing- When Avery is not casted she spends 22 hours of the day in various braces. Avery just recently flew to Philly to pick up her new braces. She is now wearing UCBL during the day while she is walking. These are just very small braces that insert in her shoe ( you can see them in the picture below). While she is napping and sleeping she wears her dorsiflexion AFO on her left foot only. Avery picked out the print on these braces too...she calls these her Grrrr braces (since she can't say leapord..so instead she growls 
Avery's UCBLs and dorsiflexion brace UCBLs
These are Avery's braces that she wore when she was 2 years old.
She had AFO's (ankle foot orthosis) and KAFO's (knee ankle foot orthosis) that she wore throughout the day. When she was just playing and crawling around she wore the AFO's. She wore the KAFO's at nap time, locked into flexion to work on stretching her quad. At nighttime Avery wore dorsiflexion AFO's which flex her heal. This is a picture of her braces (Avery picked out the design with cute little teddy bears on them).
AFO's
Dorsiflexion AFO's KAFO
TheraTogs: http://www.theratogs.com/TheraTogs are described as "Therapy that you can wear". Here are a few pictures of her in her TheraTogs.
Therapies: Avery receives physical therapy three times per week. Twice a week is in-home therapy through Michigan's Early Intervention (EI) program Early On. She also receives Speech Therapy through Early On Avery receives aqua-therapy at a local therapy clinic (Generation Care). Avery loves the pool therapy and it doesn't even seem like therapy to her. She also receives Occupational therapy at this clinic to help work on oral-motor skills as well as building up her trunk strength.
Avery w/ PT Susan Avery w/ PT Jennifer Avery w/ OT Tammi
Avery started some therapeutic horseback riding...otherwise known as Hippotherapy when she was 2 1/2 years old. The horseback riding will help to build up her trunk strength as well as balance. It has also been shown to have several other benefits such as improving self esteem and can help with speech as well.
Tests/Procedures
Avery has also undergone numerous tests and procedures here are list of some of them. Some of the initial tests were done while she was in the NICU, because the doctors were trying to get a diagnosis for her. The later tests were/are being done because we still do not have an accurate diagnosis and we are still searching for an actual cause for Avery's arthrogryposis.
Initial Spine MRI- normal results
Initial Brain MRI- normal results
Muscle Biopsy- Showed "possible denervation atrophy"
Nerve Conduction Velocity Test (an electrical test that checks the conduction of the nerve impulse). It is done by sticking electrodes on the body.- normal results
An electromyogram (EMG) ( a test that records the electrical activity of muscles). It is done by poking tiny needles into the muscles.- normal results
Full Skeletal X-ray- normal results
Renal ultrasound- normal results
Genetic test- Microarray test (checks for any deletions or duplications in the genes)- normal results
Genetic test- Larsen syndrome test -negative
Genetic test-Robinow syndrome- Negative
Repeat Spine and Brain MRI-spine MRI normal- brain MRI showed opacity of of left temporal bone which had worsened since last MRI in 2007- referred to ENT (ear, nose and throat) specialist for follow-up.
CAT SCAN of TEMPORAL BONE- 12/29/08- showed left mastoid has not developed properly and fluid in left ear.
Spine X-Ray- 01/02/09 (to further pursue possible condition of "Congenital Joint Dislocations Caused by Carbohydrate Sulfotransferase 3 Deficiency in Recessive Larsen Syndrome and Humero-Spinal Dysostosis")_ Appears normal
Renal Ultrasound- 10/15/09 appeared normal
Formal Urodynamic Study- 10/15/09- Showed possible neurogenic bladder
VCUG- 10/15/09- appeared normal
Water soluble enema (formerly barium enema)- 10/19/09- Showed redundant left colon
Here is Avery on her 2nd birthday waiting at the U of M Mott's Children's Hospital to get her brain and spine MRI's.
Avery during her formal urodynamic study @ Cincinnati Children's Hospital.
Here is Avery before her water soluble enema @ Cincinnati Children's Hospital.
