Mighty Meghan's Journey

Wednesday, May 8, 2013

It has been a busy couple of weeks at our house! Between speech, PT, OT, doctor appointments, baseball practices and meetings, life has been hectic but that's okay! The weather is finally cooperating and we have been able to get back outside and enjoy the fresh air!!

Meghan was supposed to have her 3 month post op brain and spine MRI tomorrow, but that has been rescheduled for May 23. I'm so anxious to see post op results!

We have a little more information about Meghan's kidney. She had a urinalysis last Friday which came back good - they were looking for an infection or blood. Neither were present so that is great news! It has been suggested that the next step is for Meghan to have a VCUG (Voiding Cystourethrogram) which checks for problems in the structure or function of the urinary system. It can evaluate the bladder's size and shape and look for abnormalities, such as a blockage. However, until we talk to a urologist we aren't 100% sure this will absolutely need to be done. We are hoping this will not be necessary as it does not sound like a fun procedure to put Meghan through. Otherwise, it sounds like they will just monitor the kidney by routine ultra sounds every 3 months, which she will have anyways for her hemihypertrophy condition. Right now, we are waiting to hear from a urologist on a definite next step and to get the Geneticist appointment scheduled - hopefully we can cross both of these items off of the to-do list by the end of this week.

Meghan must've been notified by someone that she is almost 2 and that when one turns 2 they need to develop an attitude :) That is okay though - I will take her feisty attitude anyday over her being sick and no energy!

Having fun on the swing!

Meghan saying good-bye to Luke before he leaves for school

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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.