Mighty Meghan's Journey

Saturday, November 8, 2014

Meghan got to meet her runner through the I Run for Michael group!! Meghan and Jenn met face to face for the first time on November 5th. Jenn and her husband, Ryan, flew from Maryland to see Meghan. When they met for the first time, it was an incredibly amazing moment that we will never forget! They stayed with us for a few days. We gave them a tour around town, went to Schell's Brewery, made pizza, played games, talked a lot about the different ways we talk and the different things we eat, met some of our family and made lots of memories. It was a fun time! They even came with us to a doctor appointment so Jeff and I could learn how to give Meghan Growth Hormone injections at home! Meghan bonded with Jenn and Ryan pretty quickly! Luke also enjoyed meeting them. He got a kick out of their accent and loved talking to Ryan about farming. Colin hung out with us on Friday night for pizza and games. We are hoping to go to Maryland this summer to see them and meet their little boys.

Welcome signs. Luke made the green sign.

Waiting for Jenn and Ryan to arrive...they are about 15 minutes away!

15 minutes til they are here!

First night staying with us and Jenn made us a yummy chicken casserole...with a very hungry 3 year old on-looker :)

Meghan with her bling from Jenn's latest fun run

Meghan's new Minnie dress from Jenn

Luke even got a few gifts from Jenn and Ryan. He will treasure these forever!

Luke's new favorite tshirt

Meghan loves her Jenn :)

Showing some love

Making pizza! This is Jenn and Ryan's Friday night tradition with their family!

Mom can I eat this YET???

The pizza making crew

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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.