Mighty Meghan's Journey

Tuesday, February 10, 2015

New shirts for the Hydrocephalus walk/raising awareness are now available for ordering! All shirt designs are the same but there are 3 different order forms - 1 for tshirts, 1 for non hooded sweatshirts and 1 for hooded sweatshirts. I will close the orders on February 22 and will place the order that day. If you need help ordering, let me know and I would be happy to help! Please note that the prices listed on each order form are estimated prices based on a minimum quantity. Prices could change depending on how many shirts are ordered. If there are more shirts than what the minimum is, the shirt prices will go down. $2 from each shirt sale will go towards the Team Mighty Meghan walk team donation to the Hydrocephalus Association. The money donated to the Hydrocephalus Association will be used to fund research to find a CURE!! If you know anyone else that is interested in ordering, pass this info on to them. You can copy and paste the order form link by clicking on the blue 'share' down arrow towards the top of the order forms, then copy and paste the link. As of right now, youth sizes are not available in either of the sweatshirt styles. However, if I have enough interest in youth sweatshirts, I can create an order, so be sure to let me know if you are interested in youth size sweatshirts. Thank you for your support!

T-shirt order form:
Price based on minimum quantity of 25 orders
Estimated price $15.73 + $2.00 donation to TMM walk team = $17.73/shirt
**Youth sizes available**
https://www.customink.com/g/snd0-0016-2enz

Hooded sweatshirt order form:
Price based on minimum quantity of 10 orders
*Price is based on 10 orders, but need minimum of 6 orders to order this shirt*
Estimated price $40.19 + $2.00 donation to TMM walk team = $42.19/shirt
**Youth sizes are not available**
https://www.customink.com/g/snd0-0016-2euf

Non-hooded sweatshirt order form:
Price based on minimum quantity of 10 orders
*Price is based on 10 orders, but need minimum of 6 orders to order this shirt*
Estimated price $35.18 + $2.00 donation to TMM walk team = $37.18/shirt
**Youth sizes are not available**
https://www.customink.com/g/snd0-0016-2etp

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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.