Lovely Little Lady Bug: About Brooke

This little blog is mostly about Brooke's journey. Each day she wakes up, I am blessed to call her my lovely little ladybug! A daughter is such a special gift. A small reflection of yourself. And some days a reminder of a simpler time. In Brooke's case, there is nothing simple about her. She is a free spirit, someone who throws the rules out the window. I am reminded of her independence, as Brooke parades through a store wearing her "Fancy Nancy" skirt over jeans, walking in patent dress shoes with toes scuffed from climbing, and hair with mismatched headbands and barrettes. She is quick to smile, but just as quick to offer an indignant look with hands on hips. Brooke is just perfectly suited with this personality! She is a strong willed girl who has to tackle a horrible disease. And she will do it with paper crowns and plastic high heeled shoes!

Brooke was born with Chiari I Malformation and Tethered Cord, and was diagnosed after having numerous seizures. Our little ladybug is 7 years old and full of life! Brooke does have days that are just great, but other days are hard for her to even get out of bed. She gets terrible headaches, backaches, leg aches and has overly sensitive ears.

Brooke also has spina bifida occult and cranial instability. She has to undergo MRI's, Urodynamics tests, and other tests often. Brooke will face various things in her future. She had a surgery on her spine in April, 2011. She had decompression surgery on her brain in August of 2010. She will possibly face a bladder and bowel surgery, and possibly another brain surgery in her future. She now has to wear a c collar some of the time because of cranial instability. This causes her head to be wobbly, which causes headaches, and other issues. Even with multiple surgeries she may have terrible pain for the rest of her life. Because it is her brain, the results vary in different people. Either way, Brooke and her family will keep fighting to educate people on Chiari and its related diseases. We know God has a wonderful plan for our little lady!

What is Chiari I Malformation

Chiari (kee-AR-ee) malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord. There are three main types of CM. CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth.

Patients with CM1 may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.

Source: http://www.chiariinstitute.com/chiari_malformation.html

Ladybug Secrets

About Brooke