Mighty Meghan's Journey

Thursday, March 14, 2013

Little Meggers has officially been scanned from top to bottom. In the last 21 months, she's had MRI's of her brain, neck, and spine - ultra sounds of stomach, kidneys, bladder and esophagus - x-rays of upper GI tract, and the newest x-rays of hips, legs and ankles. She had her lower extremities x-rayed last week, as requested by her therapists. The x-rays came back clear which is great!! However, Meghan's therapists wanted x-rays of her feet as well, but the doctor didn't include the feet when he put in the order (ugh!). The therapists wanted her hips and legs x-rayed to check for bone deformities which could be the reason why she has gait abnormalities. They wanted her feet x-rayed since she has moderate in-toeing. Our next adventure will bring us to Gillette Children's on April 23. We will have a consultation regarding Meghan's feet to see if she needs to be fitted for SMO's (braces that come to ankles) or not. St. Paul Children's - where we usually go - sent us to Gillette's as they also have a gait analysis lab if needed. I have waited a long time to have her feet looked at by a specialist so I am anxious for this appointment. Below is a picture of what Meghan's feet do when she stands/walks.

This is not Meghan's actual feet. Too impossible to take a picture of her walking and not end up with a blurred pic :)

2 comments:

Linda DahlMarch 16, 2013 at 12:52 PM
She sure has come a long way. We pray for her every night.
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AnonymousMarch 19, 2013 at 2:35 PM
Grandma's little girl is quite the fighter and she is doing so great. Are you going to need anyone to go along with you on April 23rd? If so, you know where to find me!!! Tell her grandma and grandpa love her and give her kisses and hugs from us.

Love Grandma Linda and Grandpa Bob
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This blog has been created to keep friends and family updated on the medical journeys we embark upon with Meghan. We will share updates on doctor appointments, therapy sessions, how Meghan's life is affected and how life as a family is affected. Please Note: The medical information on this blog are from our experiences and should not be substituted for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

When Meghan was 9 months old, she was diagnosed with Hydrocephalus (secondary to Aqueductal stenosis) and Chiari Malformation - both are incurable brain conditions.

At 13 months, Meghan was diagnosed with Syringomyelia throughout her spinal cord.At 22 months, Meghan was diagnosed with Hemihypertrophy of the entire right side of her body with a secondary limb length difference involving her legs, and Grade 2 Hydronephrosis of her right kidney.

Other diagnoses Meghan has are: failure to thrive, macrocephaly, global developmental delays, apraxia of speech, hypotonia, syndactyly, degenerative disk disease, growth hormone deficiency.

Hydrocephalus - Cerebral spinal fluid (CSF) surrounds and protects the brain and spinal cord. Hydrocephalus occurs when there is an abnormal accumulation of CSF within the ventricles of the brain. As CSF builds up, it causes the ventricles to enlarge and can increase pressure within the brain. There is no known way to prevent or cure hydrocephalus. Hydrocephalus is treated surgically by the insertion of a shunt. A shunt is a flexible tube that diverts the flow of CSF from the head into another region (most commonly the abdominal area) of the body where it can be absorbed. Shunts commonly include valves to regulate CSF flow based on pressure and/or body position. If left untreated, hydrocephalus is usually fatal.

Chiari Malformation (CM) - A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the bottom of the skull toward the spinal cord, putting pressure on the brain, skull and spine.

Syringomyelia (SM) - A chronic disorder involving the spinal cord. The condition occurs when cerebral spinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Hemihypertrophy - A condition in which one side of the body, or a part of one side, is larger in size than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis. For those that have a secondary limb length difference, there are two main surgical options, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally.

Hydronephrosis - aka water in the kidney - is swelling (dilation) of the urine-collecting structures of one or both kidneys due to obstruction of urine flow from the kidney. This can impair kidney function. If left untreated, this condition will progress to kidney failure.