She's the bravest person that I know

I can breathe again...

...because Julia's head doesn't hurt anymore,

...because she didn't have to have a shunt revision surgery,

...because she isn't being tortured with tests and needles and hospital captivity.

After three days at Children's Medical Center, Julia is home now. She will have to take oral antibiotics three times a day and go back to the hospital for blood work and a follow-up with her neurosurgeon, Dr. Weprin, AKA My Hero, but it appears that the infection around her shunt responded to IV antibiotics.

When I started this blog, I intended for it to be a source of information about Julia's health and progress. I had hoped to keep it updated so that instead of making phone calls, loved ones could check on her most up-to-date status.

Last week when Julia was in the hospital, I should have posted updates. I intended to at least write about it as soon as she was released. But, when she was home and I started to write about our experience of the last several days, it was too difficult. I realized that I needed time for my heart and mind to mend. I needed time to process the tests and procedures and doctors and nurses because last week there wasn't time to sleep, cry or think.

Julia is the bravest person that I know. She endured more medical tests in one day than some people will in their lifetime. She had a CT, shunt series, urine culture, blood work, shunt tap, finger prick, IV placement and abdominal ultrasound on Monday. She wasn't allowed to eat or drink for more than 8 hours, she didn't feel good and she was put through an obstacle course of medical tests and procedures that were scary, painful and invasive.

There was never a tantrum or meltdown. Her lips quivered and tears ran down her cheeks, but Julia was so very brave.

Julia is independent, opinionated, funny, spirited, strong willed, intelligent, courageous and beautiful. She is full of energy and joy. But, she is also medically fragile. She is susceptible to urinary tract infections, skin breakdown, blisters and shunt failure.

Last week was a reminder of how fragile her health can be and how vigilant we must be to protect her.

Shunt failure, including malfunction or infection, is common, and when not promptly treated can cause brain damage or death. The average shunt in children lasts 2-5 years before needing to be revised. Julia's shunt is two and half years old.

Common signs of shunt failure are headache, vomiting, fever, changes in behavior, lethargy, changes in appetite, swelling or redness along the shunt tract, visual changes and loss of neurological function.While she didn't this time, odds are Julia will need a shunt revision at some point. It's important for anyone who might care for her to know the warning signs. If Julia ever has any of these symptoms she should be taken to the emergency room so that her shunt can be evaluated.

This was not Julia's first hospital stay, but next to her initial shunt surgery, it was definitely the hardest. As I held her down for the nurses to place her third IV in two days, I felt like I didn't have the strength to participate in her pain anymore. I wanted to call Wade over to hold her. It took three sticks, two nurses and both of her hands before they got the IV into her vein. I looked into her big green eyes and found the fortitude to bite my lip and hold back my tears while the IV was placed.

Raising a child with special needs can be hard, scary and frustrating sometimes. Last week was all three. I don't know what caused Julia's infection. I pray that it is gone and will not return. I am so proud of how brave she is. I am thankful and humbled everyday for the gift of being her mommy.

"You can't be brave if you've only had wonderful things happen to you." - Mary Tyler Moore

A Visit to Scottish Rite

Julia bounded around the waiting rooms and halls of Scottish Rite hospital with endless energy, not letting her "crooked" leg slow her down as we waited to see the surgeon praying that he would tell us he could fix her leg.

She can walk. She can kind of run, but she falls every time. Most of the time, she happily pops back up and starts again. Occasionally, she bumps her head or scraps her knees, but she is one tough girl so it rarely bothers her for more than a moment.

Julia's walk and run are not exactly elegant. I know exactly which one of my girls is coming down the hall by the sound of the walk. Hers sounds like stomping.

Before she was born, doctors told us Julia might never walk so that sound is music to my ears. It's definitely not the "pitter patter of little feet," but I'll take it. I am blessed; she is blessed. And I am so very thankful for the amazing doctors and therapists who fixed her foot and gave her the gift of independent mobility.

I knew what the doctor would say, but I prayed for a different answer.

"She can walk, and she is an amazing child. I can't improve upon that." Ultimately that was his opinion.

We saw two doctors. The "real" doctor and the Fellow. We saw a physical therapist, who told us she falls because she is new at walking. Genious!

Julia had x-rays, and we waited and waited and waited.

First, we saw the Fellow and we explained that Julia walks on the side of her left foot because her leg bows out, it is getting worse, it causes her to fall and her AFOs are not helping to improve or maintain it.

He sat in the middle of the room and watched in amazement as Julia ran, danced and climbed around him. I could see that while he saw that her leg was "slightly bowed," he didn't get it. He was in awe of her. He saw a miracle. "She is amazing," he said.

Then, came in the physical therapist. I explained it all again-- her leg is crooked and it causes her to fall a lot. She can't run without falling, etc.

The therapist looked at me with a condescending smile and said, "She is new at walking. She is still learning; that's why she falls."

I wanted to scream at her, "NO, NO, NO!!!" She doesn't fall because she is new at walking. She falls because her leg is crooked and she walks on the outside of her foot. She can't run without falling, and I want her to be able to chase her sisters. Is that too much to ask?

Next, we went for x-rays of both legs and then came back and waited to see the orthopedic surgeon, "the real doctor."

Dr. Richards checked out her foot, knees, hips and legs and then watched her walk. He said her foot was perfect, knees and hips were good. She has excellent movement and mobility. Again, she is "amazing." He showed us the x-rays, which showed that her tibia on her left leg is rotated, causing the bowed appearance. He explained how he could do surgery to correct it by cutting her tibia in half, rotating it into the correct position, casting it and waiting for it to heal. Then, he said her mobility is excellent and she is still growing so it would probably rotate back in a couple of years.

"If she were my girl, I wouldn't do it," he said. He said that to do the surgery would not improve her mobility, but would make her leg look normal.

I disagree.

I know they are exprets, but I am an expert on Julia Catherine. I know her capabilities are endless. I know everything about her, including exactly how amazing she is. I know that if her leg were straight, she could run without falling. I am not sure that running is worth getting your leg cut in half for, but I'm not sure that it isn't either.

I spend all day, everyday with children, and children like to run and skip and jump and play. I have to fight for Julia to have every opportunity to do "normal" things when amazing and miraculous aren't enough.

"Strength does not come from physical capacity, it comes from an indomitable will." -Mahatma Gandhi