Mighty Meghan's Journey

Friday, February 22, 2013

Friday

It sounds like we'll be able to break out of here this weekend, but that depends on Meghan's strength! She is quite weak and we're working hard at getting her strength back. She doesn't let the therapists do anything with her so they are giving Jeff and I lots of good ideas on how we can work with her to get her strength back. They also want to see Meghan to be able to sit up unassisted, which she isn't quite strong enough to do alone yet. She doesn't need to maintain her balance completely while sitting, but she needs to be able to sit by herself for a short amount of time. We seem to have a pretty good handle on her pain now. The nurse removed her IV this morning and she's getting all meds orally now! She is a happy girl to have the IV out of her foot! She is still not the happiest when we move her around, but she is atleast asking to be picked up, instead of just wanting to lay in bed. She will be getting her first bath this afternoon - yay! This will be the first bath since before surgery. Maybe that will give her some spunk! The lack of sleep seems to have finally caught up to her. She slept all night last night and she's been sleeping off and on throughout the day today. The rest is good for healing!

Playing with my toys

Mmmm...mac n cheese!

Relaxing with my favorite things from home

1 comment:

AnonymousFebruary 22, 2013 at 2:47 PM
Great news about possibly being able to come home this weekend as long as Meghan gets more strength. I will pray harder than I have and will hope for what is best for Meghan. I love the pictures, makes Grandma feel a little more like I am there. Glad she slept all night. Give her hugs and kisses from Grandma and tell her I miss her.

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.