The BEST DAY EVER!!!!!!!

Our girls. Our amazing girls! Their courage and perseverance inspiring! This past weekend our oldest daughter rose above the pain of complex regional pain syndrome in her right hand, with the help of her pain specialist and acupuncturist, to compete in her award winning marching band's final two competitions. Little Sis, who has been wrestling with neurological complications from the syrinxes in her spinal cord braved the trip to cheer her on.

There is no such thing as an easy day. Chronic Lyme brings a multitude of challenges and each case unique. One child with serious health issues is enough to turn your world upside down. Two almost overwhelming. This week my own health pushed me to the brink, yet when I picked up my daughter's iPad, a reminder she had left for herself splashed across the screen, "Today is the BEST DAY  EVER!!!!!!!!!!!!!!!!!"

It is the final rehearsal for Narnia tonight and she is a fairy. A reminder once again that you're most challenging days can still be your very best!!

I really needed that reminder today. My tower of cards has crashed yet again. A week and a half ago I injured my left knee. On Sunday, my right knee gave out under the additional strain. I have had multiple ACL reconstructions and meniscus repairs on the right knee in the past. I'm facing surgery again, likely multiple surgeries. I don't remember if I've ever written about hypermobility syndrome, mixed connective tissue disease and Lyme? It's a chicken-egg kind of thing. Does hypermobility and MCTD make you more susceptible to the effects of Lyme or does Lyme weaken your connective tissue? At this point in my life, the answer makes little difference. When my knee gave out on Sunday, our cantata rehearsal was just beginning. The pain excruciating. I couldn't move without screaming so I stayed in my chair. As the choir, most unaware of my predicament, stood and began singing, "Where hope was lost, a seed was found; a tender shoot, from barren ground," the tears, tucked deep inside, quietly spilled over. Today, they spilled again, but Lil Sis is right. It can still be the best day ever. It just takes extra effort to make it so!!

A Day in Life of Me

A guest post by my daughter.

This is me when I got my new iPad!

I am ten. I love to write, bake, and sing. I have a one year old scaly spiky friend. Her name is Rubye. She is a bearded dragon. Now you may think I spelled her name wrong, but I didn't. You see, Ruby is a common name, but I thought that since that was a common name I would make it an uncommon spelling. I love Rubye because she is really curious and fun to play with.

Marley is a great dog, too! He always knows when something is wrong and sometimes when Mom tries to hug me, he jumps between us and lies on me and pushes Mom away. It's really funny and it always makes us laugh! He always finds me when I am sad or hurting. He gives me a Marley hug and curls up with me. He always makes me feel better. He also likes it when I read him stories, especially ones where the character's name is Marley and he is a dog. Rubye likes stories, too! I am so glad I have a pet patrol in my room!

Lately, I have been feeling pretty icky. Sometimes I have to stay home from school for part of the day because I am hurting. Sometimes I am so tired, I can't wake up. When I do, I feel worse than in my dreams. We are planning to make a chart of my body so I can circle where I am hurting. Today, even my teeth hurt. I have been wearing my neck brace because it is helping me not hurt as much. I have a shunt and have had surgery on my brain. I have two syrinxes in my spinal cord that make my body hurt or feel funny. Sometimes I have a sharp pain that feels like lightening in my back. It is pretty scary. Some days I wish I could meet another kid like me.

My big sister is having some big problems, too. Sometimes I wish I could have a way to go back in time. I would tell the doctors that we had Lyme disease from the start and maybe they could have found a cure for us sooner.

Lyme is not stopping me from doing what I love to do most. Yesterday I started to write a book. A lot of the kids in my class want a copy when I'm done. It makes me feel good that people appreciate what I'm trying to do and also I can't wait until we bake cupcakes or when a birthday comes up. Finally, I have a couple groups I love to sing for and I love to be in plays. My music teacher is the director of some of my plays. We have a lot of fun! I love my friends!  I love it when my cousins are in my plays too!

I love my new iPad because I put a bunch of learning apps on it and it is helping me with learning. Even though I may have problems I don't let them stop me.

How do you know?

How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!

Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."

Things like how to add or subtract.

We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.

A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.

The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.

This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."

She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."

When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"

She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.

Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.

In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"