Mighty Meghan's Journey

Wednesday, May 21, 2014

Still no news from last week's tests. I am going to wait another week and if we still haven't heard anything, I will call in and see if the results are back.

The Urology tests will be done on July 2. This was the earliest we could get all 3 tests done AND meet with the urologist after the tests all on the same day. Meghan will be slightly sedated due to her having to have a catheter placed. As a parent, I do not want any new findings....BUT, I am feeling really bad having to put her through these tests, so I am just really crossing my fingers that they are able to find something so we don't put her through all of this for nothing.

We are again signed up to walk in the Hydrocephalus Minnesota walk. The walk will be on Sunday, September 7, and it will be held at Mall of America. The walk will be on the first floor of the mall. Registration and check in is from 7-8am, opening ceremony is at 8am and the walk will be from 8:15 - 9:30am. If you would like to join our team and walk - OR - if you are unable to walk but would like to donate, follow these directions:
- log onto www.hydroassoc.org
- hover your mouse over the WALK tab towards the top of the main page
- Click on 2014 walk events
- Scroll down until you see the MN walk for September 7. Click on the link for Minnesota-Twin Cities
- On the right side of the screen, click on Team Mighty Meghan
- On the right side of the screen, click on the JOIN NOW button
-Follow the registration process
**Each member of your family will need to be registered seperately to walk.
**There have been A LOT of issues with the hydroassoc.org website lately, so please be patient if it takes a couple of tries to register or donate.
**I can place another clothing order, so let me know if you or someone in your family is in need of more Team Meghan clothing! We also have a lot of bracelets left, so let me know if you need any!
We look forward to walking again this year!

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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.