Mighty Meghan's Journey: 15 month well baby check up

Monday, September 24, 2012

15 month well baby check up

Meghan had her 15 month well baby check up with Dr. Sievert today. Since Meghan is a small girl, we all take turns guessing what her weight will be. Here are her stats she got today:
Weight:17lb 8 oz - .32 percentile
Height: 28 inches - 1.76 percentile
Head: 48.3 cm - 96.17 percentile - she has a larger head size because of her Hydrocephalus.

I was the closest in guessing her weight - I guessed 17.14. I guess we are all just so excited for her to be in her new carseat, but she has to weigh 20 pounds before she can go in it. Hopefully by Christmas!

We discussed a few concerns about Meghan with Dr. Sievert today, but, didn't get much clarity, as I expected. Most of her issues are neurological, which is where Dr. Petronio comes in. Dr. Petronio is her neurosurgeon at St. Paul Childrens Hospital. A few concerns we have about her are chocking/gagging/swallowing issues. She will choke, or gag, on food periodically...not all the time and not every day. Anyone who knows Meghan knows we need to have her food into small pieces or she will shove all the food in her mouth. Because of this, we are very careful she doesn't put much food in her mouth at a time. A couple days ago, I was feeding her pudding and she choked on that. This is a symptom of Chiari. Another concern we have is Meghan's left foot not having the same reflexes as her right foot. Feet and hand numbness is another symptom of Chiari. I just hope things aren't getting worse with her Chiari.

About 2 weeks ago, we were contacted by Childrens to schedule her next MRI. This is scheduled for October 16 and it will be a 2 hour MRI, where she will be sedated. She will have images taken of her brain, and spine. She will also have a CINE MRI, which is checking the flow of cerebral spinal fluid - to check for any blockage on the spinal cord. We will hopefully know much more about her Chiari and syrinx after this MRI.

Good news - last Wednesday, Meghan decided to take a few steps all on her own! She was more thrilled to walk than we were to see her walk I think. Her eyes lit up when she took those steps...it was amazing to see! She hasn't taken any steps since then, but we know she can do it!!

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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.