Mighty Meghan's Journey: :)

Sunday, November 25, 2012

:)

The shirt order is officially submitted!!! The order is for 60 shirts (WOO HOO!) :) I am such a happy mommy :) None of this would've been possible if it wasn't for our amazing family and friends! A HUGE thank you to everyone that ordered shirts or wristbands! With the money we raised from the shirts and wristbands, we will be donating $288.00 to the Chiari and Syringomyelia Foundation, $122.25 to the Hydrocephalus Association and $122.25 will be going to the 2013 Team Meghan hydrocephalus walking team. This will then be donated to the Hydrocephalus Association on behalf of Team Meghan at the 2013 walk. In total, we raised $532.50 which will be donated to two hard working organizations doing research to find a cure. Amazing!

I will be enjoying this quiet week, as it seems after this week, we start our list of doctor appointments before Meghan's surgery. Meghan will have PT and OT on Wednesday. She had a break last week for Thanksgiving and will be hard at it again this week. A few things her therapists are working on with her are feeding herself with silverware (this is a huge struggle), building strength in shoulders, pulling herself to the standing position with no support. Meghan is very resourceful and will look for anything to help her get to the standing position. Meghan has a team of 3 therapists that come to the house each Wednesday. She has 3 more weeks of therapy and then will be done until the end of January or early February, depending on how her recovery goes. These girls are so dedicated to Meghan. They told me two weeks ago that they would like to come and visit with Meghan when she gets home from the hospital and is well enough for visitors. I am so thankful for their patience and dedication to Meghan.

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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.