Mighty Meghan's Journey

Wednesday, February 6, 2013

We have had a very hard worker on our hands these last few weeks! Meghan has been able to cross off several items on her to-do list (therapy goals)! She's accomplished feeding herself with silverware (and doesn't always need to use her special utensils), she can stack 2 large objects on top of each other, climb onto her toddler bed, hold a book with both hands and turn pages with her thumb, says hi baba (baby) and hi papa (puppy) AAAAANNND...when I have to leave the house she holds out her arms for a hug instead of crying (woohoo!!!!)! This all makes for very proud parents! She has also developed a HUGE love for Molly and puppies. Molly is the first thing she wants every time she wakes up.

Meghan has been in therapy for almost a year. The plan is to meet with the therapists and an official from the school district the week after surgery while we're at home recovering with Meghan. We'll review Meghan's goals from the past 12 months and write new goals for the next 12 months. There has been talk of adding speech therapy to her plan. IF that gets added, she will not start that until the fall. BUT, there is a possibility that her speech will improve after surgery so I am not too concerned about speech at this point.

Meghan has a hydro friend that is need of prayers! This little girl is almost 2 years old and has hydrocephalus like Meghan. She had a couple big seizures on Sunday evening and was flown to a hospital that can handle her needs. Her seizures stopped, but she spiked high fevers several times and the family still doesn't have answers. They checked her shunt and everything looked good with no infections present. She is doing better, but still needs prayers.

1 comment:

AnonymousFebruary 6, 2013 at 10:02 PM
Way to go meghan on doing well and checkingthings off your list. I will keep your friend in my prayerz grandma loves you grandma linda
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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.