A Beautiful Day

Inspired by the courageous spirit of our little red headed, green eyed girl, more than $2,000 was raised for Scottish Rite Hospital for Children on Sunday when Julia's Uncle Jimmy ran the White Rock Marathon.

We can never repay the world class care that Julia continues to receive from Scottish Rite Hospital. They are truly miracle workers and everything they do is 100 percent free to patients and their families. For parents of children with special needs, who are medically fragile, medical bills are overwhelming. Having all of Julia's orthopedic care provided, free of charge, by Scottish Rite has been a blessing to our family, and countless other families in Texas.

It is important to us to pay it forward by raising awareness and funds for Scottish Rite. Jimmy was the third highest fund-raiser this year due to the generosity of family and friends. We are so thankful for the many hours of training and all the miles run by Jimmy. It took an enormous amount of effort and dedication, and we will forever be grateful. Thank you for being our hero, Uncle Jimmy!

"A hero is a man who does what he can."-Romain Rolland

Princess Shoes

Julia wants to wear princess shoes. You know the plastic, high heel dress-up kind. We must have ten pair at our house. We have Ariel, Cinderella, Snow White, Barbie. You get the idea. Gracie wore them. Maggie wears them now and Julia is obsessed with them.

The problem is that princess high heels don't fit over tennis shoes and AFOs. She can get one sort of half way on and hobble around in it. She was happy with that for awhile, but not anymore. She wants to be able to walk around in princess shoes and I can't convince her that it simply won't work for her. Have I mentioned that she is a bit strong-willed?

This obsession has been going on for about three weeks. She has added princess shoes to her collection of sleep must haves along with Mickey, Minnie and her Pillow Pet.

I have tried distracting her with other toys and hiding the princess shoes, but nothing has taken her mind off her desire to wear those glamorous high heels.

In the grand scheme of things, I know that not being able to walk in princess shoes is not a big deal. I try to have a glass half full attitude and be grateful that Julia can walk at all.

But, yesterday when I was futilely explaining to Julia why the shoes won't fit her and are not safe for her to walk in, I got glimpses of the future.

I started thinking about having to explain to four-year-old Julia why she doesn't go potty like her sisters and telling six-year-old Julia that she can't play soccer because she has a shunt. I started wondering if we will be able to find ballet slippers and tap shoes that fit over AFOs. The thought of all of the hard conversations that Julia and I will have as she grows hit me and for a moment it was hard to not let "life isn't fair" and "spina bifida really, really sucks" feelings overwhelm me.

I have to remind myself that today it's just princess shoes. Julia is happy, healthy and thriving. I need to take one day at a time and not look too far into the future. I have to remember that her attitude about spina bifida is going to reflect mine so I need to focus on what she can do and not the things she can't.

But, I give myself permission to be sad sometimes. I still mourn for the life that I imagined for Julia during the first 18 weeks of my pregnancy. The life that she will never have. A life that doesn't involve a shunt, catheters, daily medications, hospitals, therapists, specialists and special shoes. Sometimes I wonder if the grief will fade. I wonder if I will ever stop hiding in the bathroom to cry over plastic princess shoes.

I am thankful...

I decided in honor of Thanksgiving our family would tell one thing that they are thankful for each day of November. Each night we sit together and take turns sharing one thing we are thankful for. It can be as simple as the beautiful fall weather or one day Julia was thankful for "Mickey Mouse." Gracie and Maggie have both said that they are thankful for their families and teachers and school among other things. It has been great. I highly recommend it as a family activity to teach children about giving thanks and blessings.

Today as I was thinking about what I am thankful for, I decided that I would share it outside of the family.

I have had the privilege to meet many Spina Bifida moms through chat groups and blogs and they all have a similar story of the way that they were told of their child's diagnosis.

Misinformed doctors are providing expecting parents with scary and inaccurate information and then offering, often encouraging, the option to terminate the life of a precious child.

More than half of babies diagnosed in utero with spina bifida are terminated.

This statistic weighs heavy on my heart.

What I am thankful for today and everyday is that on March 12, 2008, Julia Catherine completed our family.

He said that there was something "wrong" with her. He said she had the lemon sign. He said that she had a chiari malformation of her brain. He said that she had hydrocephalus. That there was a large defect on her spine. That she would never have bowel or bladder function. He said that she would probably never walk. She would face a lifetime of painful surgeries and we needed to make a "choice."

He didn't say that she would take my breath away the very first moment I saw her...

that she would be beautiful...

that she would be a fighter...

that she would be perfect...

that she would be brave...

that her smile would light up a room and melt our hearts...


that she would be smart and funny and that her sisters would LOVE her...



that she would be determined, tenacious and spirited...



He didn't know that we needed her to make our family complete...

Doctors are not giving parents both sides of the story. Our life with Julia is a beautiful life. I am thankful and blessed to be Julia's Mommy. Choose life.

Jogging for Julia

Dear Friends,

Wade and I are blessed and excited that our brother-in-law, Jimmy Holbrook, is running the White Rock Marathon this year in honor of Julia. The White Rock Marathon benefits Scottish Rite Hospital for Children.

Julia has been a patient at Scottish Rite since birth. We owe so much gratitude to the amazing doctors, nurses, therapists, orthotist and countless others on staff at Scottish Rite Hospital for the outstanding care that Julia has and continues to receive.

Scottish Rite provides care to Texas Children with orthopedic and neurological impairments free of charge. Scottish Rite Hospital is fully funded through donations.

If you would like to make a donation and support Jimmy's efforts to raise money in honor of Julia for Scottish Rite Hospital, please follow the link below to his fundraising page.

http://www.active.com/donate/tsrh10/jholbrook

Thank you so much for your consideration.

Love,
Lauri, Wade and Julia Catherine

Trick-or-Treat

There is a magical moment when the light bulb turns on for a two year old on Halloween when it all makes sense. It's usually about the third house that they realize the awesomeness of trick-or-treating. I have witnessed this magic moment three times now and sadly, since Julia is my littlest princess, that's the last time I will watch this little moment of childhood bliss through the eyes of my own child.

It is one of those precious moments of parenting perfection that you never forget and never get back.

Every time we walked away from a house on Halloween night, Julia would say, "I want to trick and treat again!" She had the same enthusiasm at every house we went to.

I was even more grateful for the fact that while trick-or-treating through our neighborhood, Julia refused to hold my hand as she chased her sisters down the sidewalks insisting, "I can do it by myself!" She was exactly right, she could! While I would have loved to hold her tiny hand, I am beyond blessed that she didn't need me to.

I think God knew exactly what he was doing when he gave Julia two big sisters to chase. Keeping up with them has proved to be her best therapy.

Unfortunately, we didn't have a great October at the Kennedy Casa. We were a sickly bunch. But, this last weekend everyone was feeling better. We made it to the Dallas Arboretum to see the "pumpkin houses," to church to see Gracie sing for Choir Dedication and we had a fantastic Halloween. It was a beautiful weekend and I am thankful that we are all healthy again.

I need to say thank you from the bottom of our hearts to Ashley AKA Aunt Tinky, Emmy and Memaw for the helping hands and dinners this month while I was recovering from surgery and the girls were sick. October was a bumpy ride for us and you all made us feel loved and supported.

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

Two-year-olds DO NOT like hospital beds!!!

Julia was released from the hospital yesterday after a short stay for a urinary tract infection and all I can say is HALLELUJAH!

We were only there for twenty-four hours so she could get IV antibiotics and fluids, but it seemed like much, much longer. I learned some lessons during our stay.

First, toddlers don't like to be confined to hospital beds with IVs in their hands. They will use all of the tools God gave them to break free, including their teeth.

They also have super human strength. It took three adults holding her down to place the IV.

They will not wear the round stickers that you are supposed to wear in the hospital to monitor your oxygen, heart rate etc. I just had to tell the nurse, "I'll let you know if she stops breathing, I promise!"

Last, I learned that in order to avoid waking the "savage beast," as carefully as if I were disarming a bomb, I can remove her diaper, catheterize her and put on a fresh diaper in the dark and without making a sound at 3:00 a.m.

I kept telling the nurses, "she isn't usually like this." I am not sure why I cared, but I didn't want them to think my baby was always a monster.

Luckily, she is feeling much better and she is almost back to her sweet self again! We wouldn't have survived the last couple of days without major help from Emmy and Memaw. Thanks for coming to the rescue!

A big thank you...

I want to say thank you to the friends and family who have called to congratulate us on Julia's big accomplishment. Walking is a HUGE milestone for her so thank you for celebrating it with us!

Words can't express how proud we are of her. It is her tenacity, determination and hard work that has enabled her to walk and we are beyond excited for her.

During her last therapy session her therapist told me not to be discouraged about her using a walker. She said that she might need it for another year. That was on April 30th. She walked on her own May 10th. I think she likes a challenge!

I only wish I had a video to share of the moment Maggie saw her babysister walk for the first time when I picked her up from school on Monday. Maggie is Julia's biggest cheerleader. The look on her face and her squeals of excitement were priceless. It was such a precious moment, it even made her teacher cry!

Julia can walk!!!

I have to admit I was irritated yesterday when my babysitter called at the last minute and said she couldn't keep Julia because she had an emergency.

I did not want to use my last sick day for this school year to stay home just because I didn't have childcare. Usually in this situation I call my mom and ask her to babysit, but for some reason I didn't. I used my last day and stayed home with Julia.

After the morning chaos of getting everyone dressed, fed and off to school the house was pretty quiet with just Julia and me. We were sitting in the living room playing when she asked me for her walker like she always does in the morning. I said okay, but you don't need it anymore, like I always do in the morning. I went to get her walker while she waited for me by the couch.

As usual, I stopped a few feet away from her and said, "go get your walker, you're a big girl, I know you can do it." Usually this is when she gives me the "stink eye," falls to the floor and crawls to her walker. Unlike the hundreds of times before she let go of the couch, steadily got her balance and slowly and carefully walked to me. She put her chubby little arms around my neck and said, "I'm a big girl!" As the tears began to flow, I said "yes, you are!"

She walked back and forth between me and the couch about fifteen times and then decided that she could venture off around the house.

That's what we did yesterday. She walked around the house as if she was exploring a place she had never been before and I followed her around with the video camera.

I can't think of a better way to have used my last sick day. If I have to take another day off for a real sickness and I get docked my salary it will be worth every penny!

Impromptu photo shoot

Wade took some pictures of Julia and Maggie on Sunday morning right after they woke up. I think he was trying out some new camera gear. I thought they were cute enough to share.

Choir Festival

 

Gracie had her last performance for the season with the Cherub Choir at church this past Sunday. They were too cute!

Daddy and the Girls Day Out

Wade took the big girls to the Dallas Museum of Art on Sunday to see The Lens of Impressionism exhibit. He said that they loved it and they were really well behaved. They even whispered the whole time they were inside the museum. Photography was not allowed, but Wade snuck a few photos without getting caught!

Soccer Season

Gracie just completed her first season playing soccer. She loved playing soccer and she was pretty good. She played on a co-ed team and she didn't let playing with boys intimidate her one bit, probably because she has six boy cousins she is used to wrestling with. I am thankful for all those boy cousins that are making sure my girls are tough! She even liked soccer so much she tried to tell me she didn't want to take ballet and tap anymore. I told her we were going to stick with dance and soccer for a while.

Check-up with Dr. Weprin

Thursday Julia had a check-up with her neurosurgeon, Dr. Weprin. I let her walk in to the hospital instead of riding in the stroller. It took three times as long to get to the third floor where neurosurgeons for children is located, but she LOVED walking. She stopped to look at the trains and the castle. She stopped and talked to people and she liked the elevator ride. She gets a lot of attention for some reason and she loves it! Dr. Weprin saw us in his office so she played with his model brain and she climbed on his furniture. He was impressed with how well she is doing. He checked her out from head to toe and said she looked great!

Long, long day at Scottish Rite...

Julia and I spent the whole day at Scottish Rite on Tuesday for a clinic visit. This was the first time she has had a clinic visit since she started walking with her walker. She had so much fun walking around the hospital looking at all of the sites, especially the fish. She stopped to talk to everyone along her path. It took us a long time to get from one place to another! She loved all of the attention that she got from people who thought she was cute. She saw Dr. Adams, her developmental pediatrician, he was impressed with how well she is doing. She also saw Dr. Richards, her orthopedic surgeon. He said she was doing great as well. His only concern was that her left leg is curving out a little. We have been worried about that also. He thinks that new, taller braces will help straighten it out. If not, we will need to take her back to have x-rays. She also had a renal ultrasound. We won't have the results from that until we see her urologist in May. She had blood work done to check her kidney function and to see if she has developed a latex allergy. She didn't appreciate having her blood taken. We haven't gotten the results back on that yet. In addition, she saw a physical therapist, occupational therapist, nutritionist, orthotist and many, many nurses. The physical therapist suggested that we only let her use her walker when she is outside so that she will start walking without it. I am not sure if that will work, but we are trying it out. We got to SR at 9:30 and left at 4:30.