Mighty Meghan's Journey

Thursday, January 8, 2015

Happy New Year! 2014 was a great year for our Mighty Meghan! It was the first year since she was born that didn't consist of a hospital stay! It was also the healthiest year she has had since birth! Woohoo!!! We hope to have another great year in 2015!

Meghan is getting much better with taking her growth hormone shots. She doesn't cry as much when she is given her shot! We will have a check up with her Endocrinologist in a couple weeks to see how she is doing and to see if she has grown at all since starting growth hormone. We have already been told not to expect to see much growth at the first check up, but we will see!

We are very excited for this summer! On Christmas Day, we surprised Meghan's runner and told her that we booked tickets to fly to Maryland to visit them in early June! We are excited to have this opportunity to visit Jenn and Ryan again and to meet their 2 adorable little boys! While we are in Maryland, we are going to try to meet up with a family who has a little girl with Hydrocephalus. The Mom of the little girl and I have been friends since Meghan was diagnosed.

Otherwise, there isn't a whole lot going on with her right now, which we are very thankful for. We - like everyone else - are doing our best to dodge the influenza bug that is going around right now. It seems to be everywhere.

The annual Hydrocephalus Association - Minnesota walk will be held on Sunday, September 20th, so mark your calendars if you would like to join our team and walk for a cure! I will post more information as soon as it becomes available!

1 comment:

AnonymousJanuary 14, 2015 at 12:11 PM
It is so exciting that Meghan had a good year with no hospital stays. I'm sure getting shots every day isn't wonderful but hopefully it will help--if not we will know she is just meant to be tiny and petite like her Mommy. I am so excited about your trip out to see Jenn and Ryan. Is the entire family going? Give Meghan hugs and kisses from Grandma. I have added the annual Hydrocephalus walk to my calendar. Do you know will it be at Mall of America again? Thanks for posting and keeping us updated. Looking forward to hearing the results from her next appointment.
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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.