It's just one more thing...

Peanut butter and jelly sandwiches are off the menu at the Kennedy house. You won't find any Reese's Peanut Butter Cups, Snickers or Peanut M&Ms either. Julia is officially, confirmed by skin and blood test, allergic to peanuts, as well as pecans and walnuts.

I suspected she might have a peanut allergy a year ago when she got a mild rash the first time she tried peanut butter. Since then I have avoided giving her anything that contained nuts. That was until recently when Wade decided to "challenge" her peanut allergy with a PB&J while I was away from the house. One bite into the sandwich her face broke out in hives, her lips swelled up and Wade finally believed me that "we don't give Julia peanut butter."

While Julia has only had swelling and hives with previous exposure, her allergy doctor made it clear that every reaction to exposure can be different. We have to keep an Epi-pen with her at all times and be prepared for an anaphylaxis emergency.

It was clear this past Easter weekend how difficult it will be to keep Julia safe when we are away from home. It seemed like every other Easter Egg she opened had peanut butter candy in it. What is yummy for most kids is poison for Julia. I had to snatch most of her Easter candy away from her as soon as she got an egg opened. Thank goodness she was a good sport about it. The scene could have gone so differently if she had been in a different mood.

Julia's nut allergy is just one more scary medical issue. One more potentially life-threatening, how am I ever going to keep her safe when she is out of my sight, medical issue. It's just one more thing.

Clinic Visit 4/21/11

Spring Break 2011

Courage

"That was fun, Mommy," Julia said as the technician un-swaddled her and I helped her down from the cold, hard MRI table.

I had been dreading this MRI for weeks, worried about how her shunt was functioning and about how she would react to the test.

Typically she is reluctant to lay down on the sterile metal table, but not this time. She was happy as a clam.

The MRI technician explained to Julia that she was going to wrap her up nice and tight so that she could not move and then take some pictures of her head. Julia happily nodded her head and giggled. Then, she put some headphones on Julia's ears to block the noise and foam padding around her head so that it was immobile. Still, Julia was smiling. I leaned over her and told her that I would be right beside her and she tried to shake her head, but she couldn't move.

Then, they slid her into the MRI tunnel and the banging and clanking noises proceeded. I was still anxiously awaiting the silent tears and quivering lips that have accompanied every other CT or MRI, but they never materialized.

I am relieved that Julia is no longer scared to have an MRI or CT. They are part of life for her. I am sad that she has had so many in her three short years that they are common place, fun...

Hospitals and medical procedures and tests are not supposed to be fun. They have been so much a part of Julia's life that they are her normal. She asks routinely "Am I going to the doctor today?" and she says it with such enthusiasm!

I am grateful to the doctors, nurses and staff who have cared for Julia at Children's Medical Center and Scottish Rite Hospital. The gifts, lollipops, stickers and attention that they lavish upon her have made trips to the doctor not so scary. In fact, check-ups are down right fun. Her favorite part is when she gets to have a sparkly band-aide to wear home and show off to her sisters.

I will always be nervous about the outcome of Julia's medical tests and procedures. At least now I don't have to worry about her fear and anxiety, because she is so very brave.

Julia is Three!

and she can run in the sand...
and dance like a ballerina...

Untitled from talononline on Vimeo.

R-word.org - Change the conversation...

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