Summer Highlights- Part 2

End of July

More ballet for Olivia

Hanging out on the deck

Babysitting for girls

Olivia's MRI- 1st one without sedation. It was fabulous that Olivia didn't have to go through waking up and recovering from the sedation meds! And no restrictions- we partied at the park with friends afterwards. 

Lots of days at the park

Austin & Kurt went to a car race- Austin sitting in some fancy car. I won't even pretend I know what kind :)

Nyah's Birthday - 13 years old!

Hummingbirds- we have several feeders up and we were thrilled to find a nest in one of our trees.

My favorite summer treat

 Farm camp

Laws Family Reunion - 25 people staying at our house!! It was a wild & crazy week, and we had tons of fun!

2 of my sisters & their kids stayed a few extra days and we played some more :)

I went with Austin's Civil Air Patrol squadron to a tour of the Salt Lake Airport air traffic control tower- 25 stories up!

Kurt's work summer party at Boondocks- games, golf, and go-carts

And we ended our month at Primary Children's to go over everything with Olivia's genetics doctor. 

I think this was our wildest & craziest 2 weeks of summer- Nyah had girls camp one week. The next week Austin was at scout camp, Jolie & Sophie went to farm camp, and Kurt was on a business trip.  George & Nyah had birthdays. We had a Family Reunion to get ready for and hosted 18 people. Nyah got her braces off, dentist appointments, and Olivia had a few appointments. Ballet, friend's birthday parties, horse lessons, and a volleyball tournament (my team took 1st). Swimming and hiking and trampolining and riding bikes and hanging out in the backyard. Eating countless sno-cones. 

I love summer! 

Olivia Update

For those who are new to Olivia's NF1 journey-
Learn about NF
Facts & Statistics
Diagnosis of NF1
&
Olivia's Story

Recovering after surgery

In the beginning of June, Olivia had a sphincter pharyngoplasty surgery- hopefully to fix her palate which didn't completely close. This was most noticeable when Olivia talked- she lost a lot of air out her nose, sounded very nasally, and was difficult to understand. But it really was a problem when she did anything where she needed to breath- running, playing, eating- so, you know, pretty much everything. She couldn't even build up enough pressure to blow a raspberry! 

The week after the surgery she had a nasty sore throat- not strep, but a red, inflamed, painful throat all the same. And then a week after that is when she broke her teeth dancing in the shower. So not a great month, but she is feeling much better. As for whether or not the surgery is successful, that still remains to be seen. She has a post-op appointment this week, but it's mostly to check on her throat's healing. They won't retest her speaking or scope her throat for another 3 months, so she gets a nice long break from speech appointments & daily practice. 

Other areas of concerns- 

Olivia was horrified to find a fox skin- her favorite animals!

For the last year Olivia has been super sensitive to light. It makes her eyes hurt, and she often wears sunglasses indoors or covers her eyes. Its not just bright light, but everyday, normal light- although bright lights are more painful. It seems worse when she's congested due to allergies or a cold, but it is a constant problem. So far her opthamalogist and other eye specialists don't have specific answers, so we are investigating with her geneticist & possibly a neurologist.

We don't know the status of Olivia's plexiform neurofibroma in her left neck/ear area. It was growing at about a 16% growth rate as of last year. She had an MRI in December 2014, but the woman responsible for forwarding the scans to the National Cancer Institute had moved on to a new job, so it wasn't sent and we didn't realize it wasn't sent until about a month ago. So, hopefully, now its been sent off and we'll hear back on that soonish. Note to self: call this week to find out. Olivia is scheduled for her next MRI this week. In addition to the plexiform in her neck & optic pathway gliomas, they are also checking on her vocal chords. In the pre-surgery exams, the ENT also noticed her vocal chords and throat were more sluggish on the right side, which may mean there is something growing on those nerves as well. 

Hiking near home

Physically, Olivia still gets pretty worn out by daily life. My goal for her this summer was to build her strength so she could have better breath support and not be worn out by basic day-to-day activities. For example, one goal was for her to ride her bike to the top of the hill on our street. It's not a big hill, but she's only able to go about halfway up so we started riding bikes every day. Obviously my goals for the summer were put on hold when we decided to go forward with the surgery, but now that she's mostly recovered we are back to focusing on her physical strength. She needs 2 30-60 minute exercise sessions a day of really focused exercise, not just playing around. We try to do a variety of things so it's fun- physical therapy exercises together, swimming, riding her bike, hiking, exercise classes or swim lessons at the rec center. It takes a lot of time, but it makes such a difference to how she feels and what she's able to do!

Summer Highlights

JUNE

Austin & I ran the Dirty Dash. 

Olivia had surgery - she's doing really well! 

Austin's birthday - 14 years old!

Crowned with Virtue Summit - a wonderful day camp for girls that our whole family participated in. 

Father's Day

Jolie is doing horse lessons again

Austin had Youth Conference. Unfortunately, Austin became super sick and had to come home after a couple days. 

I had a birthday and was showered with love by Kurt & kids. 

Olivia broke her front teeth dancing in the shower....

....and got them fixed.

JULY

Sophie's birthday- 5 years old!

Fourth of July in Idaho - visiting the Army surplus store. 

Olivia started Ballet camp

Picked Austin & Nyah up after they spent a week with grandparents in Idaho.

Kids & I ran the Bubble Run - Kurt was supposed to be in Germany but he surprised us and came home a day early. We let him sleep in and recover from jet lag instead of getting him to come race with us.

Favorite Pictures

Adventurous Jo

Early morning walk with George

Family Fun

My girls are ready for summer- even if it wasn't quite warm enough!

It's hard to see, but there is a mama Robin bird feeding her 3 chicks in a nest on top of the speaker. 

Ready to ride in the rain.

Jo received a new bike for her birthday, so Sophie graduated to a bigger "horse."

Pyramid!

Hanging out in the backyard together- throwing the ball for George.