Time for some pictures

I needed some pictures of Olivia for our NF Walk websites, and of course Jolie had to join us. These two girls made me laugh so much - talking nonstop, posing, not looking at the camera, moving just as I take a picture, and so on . Here are some of our mishaps:

Salt Lake City NF Walk

The Salt Lake City NF Walk is August 25th at Sugarhouse Park.

Please consider walking with Olivia's Team.

Join Olivia's Team

If you won't be able to attend the walk, please consider helping us reach our fundraising goals by making a donation to the Children's Tumor Foundation!

Make a Donation

Thank you!

Love, the Richards' Family

Left or Right?

Olivia & Jolie have been working on some fun alphabet books. Sophie insists on joining us for "school" with her own notebook.

Is she left-handed?

Or right-handed?

Or maybe both?

I *think* by this age our older kids were favoring one hand over the other, but not Sophie. She keeping us guessing!

The sun is shining!

And we have the sunburns to prove it!

Austin and Sophie are my poor fair-skinned children, and they look like red lobsters and are hurting! But we've had fun and now I'll remember the sunscreen.  

At the park-

Riding bikes

Picnicing with friends

In the sand

At soccer games

I'm exhausted. My kids are still going strong.

Scenes from last week

Playing in the rain

Playing in the hamper

Playing in the hot tub

Helicopter landing at Austin's soccer practice - seriously weird.

Notice how close it is to the kid in yellow at baseball practice?

Taking a walk in the rain

Aren't they beautiful?

Miss Kaelisse

My neice, Kaelisse (1 yrs), did not have a good time in Utah.

When she flew in from Texas with her mom, my sister Amelia, and her sister, Tylie (2.75 yrs), she had already survived the tornadoes in Arlington, waited around the airport a whole day before their flight was cancelled, came back the next day to catch another flight, and was suffering from an annoying cold. Watery eyes, goopy nose, cough - she was pretty miserable the whole weekend.

Sunday morning, Amelia woke me up around 4:30am. Kaelisse was having a hard time breathing. We spent a little while trying to figure out what we needed to do or could do for her, and ultimately realized she needed to go to the emergency room. 

 Whenever they gave her a breathing treatment she calmed down and fell asleep, but minutes later when the treatments ended she was awake and gasping again. She was at the hospital for a few hours before they decided to send her up to Primary Children's. Brent, who wasn't able to come to the wedding because of work, caught the first flight he could and arrived that evening.

Kaelisse spent 6 days at the hospital - 4 in the PICU and 2 on the floor. Now the doctor's don't like to give an official diagnoses of asthma to someone so young, especially since this was her first episode, but they treated it like asthma, gave Amelia and Brent training on asthma care for Kaelisse, so the assumption is she has asthma and it was compounded by her cold. Only time will tell.

One thing is certain, when she came back to my house, she was happier and healthier than I had seen her the whole wedding weekend. I couldn't even get a good picture of her, because she was too busy playing and running around.

Miss Tylie got to stay with me all week. I think she had a blast playing with my girls and being a part of our {wild & crazy} days, but I also think she was thrilled to head home to Texas where she can be the big girl in charge again.

Olivia's Latest MRI

As many of you are aware, Olivia had an MRI last week. A couple days later I called the office to get the results and was told "No changes." Hurray!! I had family in town so the news passed quickly. As I always do, I asked them to send me the MRI report. It came and after reading it, I realized there was a new finding. Boo.

The wording was confusing:

"Unchanged appearance of multifocal T2 Hyperintense signal in right orbital, observed in retrospect, most likely representing I CN V1 plexiform neurofibroma."

I didn't understand all of those words- still don't. But "plexiform neurofibroma" is a big phrase in the world of NF and it's something Olivia hasn't had in her MRI's before. (Olivia's 9 MRIs have all been of her Eyes/Face/Neck & Brain).

So I called Olivia's specialist on Monday- he had also missed the new finding and wanted to speak with the radiologist who read the MRI before he could give me any specific information.

Wait. Wait. Wait.

I'm not very good at waiting for doctor's to call me back. Especially when I'm worried. Plexiform neurofibromas can grow rapidly and get big, potentially causing disfigurement- Diagnosis of NF1- scroll down to complications and #1 Disfigurement talks about what plexiforms neurofibromas can do. All this has been swimming around in my brain as I wait, wait, wait.

So I called him back a couple days later before he had a chance to call me. What?? He's busy with hundreds of other patients and I only have my girl to think about.

Olivia does have a "new to us" plexiform neurofibroma in the right optic canal, separate from the optic pathway tumor on her right optic nerve. The specialist said, "the radiologist said he went back to see who was the idiot that missed it 6 months ago, and Oh! it was me." So, it was there and hasn't changed in the last 6 months, which is good.

I don't understand where it is growing from- Olivia's specialist said the radiologist had to pull out a skull to explain it to him, and all I have is the specialist's phone explanation. So here it is, for what it's worth- the long, narrow growth of cells is coming into the optic canal through a small opening in the bone- possibly growing on a cranial nerve. If it were to grow and become more noticeable, it would show up on her eyelid or eyebrow. The position of this neurofibrmoma is rare, but it does exist in other people. There is enough space that it shouldn't put pressure on the optic nerve and affect her vision. It could fill up the opening it is growing through and erode or put presssure on the bone. It could fill up the area behind the eye and cause the eye to protude (medical term- proptosis).

For now, we watch and wait. In 6 months Olivia will have another MRI to see how everything is doing inside her beautiful head.

The other results from Olivia's MRI:

The optic pathway tumors on the optic nerves of both her eyes are unchanged. The report says, "Enhancement is less conspicuous that on the prior exam" which is good, though in all the other excitement I forgot to ask the specialist exactly what that means.

And the best news, the other tumor we were watching in her brain has SHRUNK! It was 9x9x9mm and is now 7x6x6mm. Super exciting!!

Lately, I've had many people asking me "How is Olivia doing?"

Olivia spends her day in typical 5 year old fashion- playing and fighting with her siblings, biking or swimming, watching cartoons, digging in the sand box, jumping on the trampoline with her friends, reading with Mom, going to the park- we feel incredibly blessed that Olivia is doing so well.

She does get tired much quicker than other kids- she's always the first one to head inside, she's always the first (and often the only one) ready to go home from outings and activities. She's my only kid who willing rests on the couch during the day. She'd probably still nap if I let her. She's never happy when I make her walk all the way home from the park, but I know the exercise keeps her body strong and her energy levels up.

And there's always something to worry me- if she has a headache is it because she's tired or is it the NF1. When she complains about her knee hurting, is it growing pains or is it related to the NF1.

I cannot tell you how grateful our family is for everyone's concern, love, and prayers for Olivia. This would be so much harder without our family and friends supporting us.

Wedding - Part 5

Dinner

And that is sadly the end of my wedding pictures. I didn't take any of Michael & Laura's awesome reception. Too busy!!

Wedding - Part 4

Time to go down the big hill

And once you get to the bottom of a big hill of course someone will announce, "I have to go to the bathroom!" and we get to make a mad dash up the hill.