Mighty Meghan's Journey

Friday, August 9, 2013

Oh little Meghan...the stories we will share with you when you are older are endless! I feel like I have aged 10 years in the last 1.5 years :) But...I wouldn't trade any of it for the world because the journey we are on with you has taught us so many things. It has taught us what compassion truly is. It has taught us not to be so judgemental of others. It has definitely taught us patience. It has taught us more about the human body than we ever imagined we'd know. We've learned funky terminology that the doctors talk to us about. But most of all, it has taught us how unbelievably strong such a little girl can be! You are amazingly strong and we are extremely proud of you! Yesterday, we were told of a slight setback. Your AFP test, which is a tumor marker blood test, came back at an elevated level. Elevated numbers are not our friends :( We want really really low numbers. But this is okay, because it is just another learning experience for us. The increase isn't an extreme jump from April, but it is considered a red flag to your doctors who keep a close eye on you. Your number could be elevated because it is picking up on something in the very very beginning stage, or it could just be a fluke. Mommy and Daddy think it's just a fluke and that it's just your sneaky way of keeping us on our toes! We are going to have you rechecked in 3 months and at that time, we hope to hear your number went back down to the normal range. We don't want another number increase. Mom and Dad are going to try really really hard to think positive! We sure hope the next 3 months go by fast so we have more answers! We know you will keep us very busy, which will help the time pass! You just keep being the happy, adorable little girl that you are and we know that everything will be okay :)

1 comment:

AnonymousAugust 18, 2013 at 2:45 PM
Grandma just got a chance to catch up on Mommy's blog that she posts for us all to keep up on your life. You definitely are a little fighter. I am going to agree with Mommy and Daddy and think positive that the number being elevated was a fluke. You are doing so good and Grandma was so excited that I could hold you without you crying until you saw your Mommy and Daddy. Love you lots. 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.