End of Summer, Back to School, NF Walk, Miracle League Baseball, and More...

Summer concluded in the blink of an eye and the kids just completed their 5th week of school. We enjoyed the run of fun activities at the end of summer and "skidded" into the first day of school on Aug 24th. Travis started 3rd grade while Nolan started 8th and Barrett started 6th. Scott returned from 2 fire weather meteorology dispatches and 2 work trips since the last update. Whew...

Travis completed his 22nd MRI (20th in Salt Lake City) on Aug 18th and his 3rd NON-SEDATED MRI. :) We received a phone call from the MRI department the night before stating their sedation monitor just broke and we would need to reschedule. They did not know this was the last time we were booking a sedated time slot for the scans, but trying them without sedation. We all agreed to proceed with the scans as planned, going non-sedated. They told us to arrive just 15 minutes before T's scan time since T didn't need the additional assessment time for sedation. Travis thought it was a little strange going straight to the MRI room without stopping at the "Cars" (or other themed) room, yet very cool since he knew if he held still he wouldn't get a "poke". A big smile appeared on his face when we told him MRIs would be like this from now on since he can do them without sedation/sleepy medicine. The tech commented on how calm T was, we told him it was T's 22nd MRI. T got on the table like he owned it and quickly settled into place and started watching "NASCAR IMax".

T watching "NASCAR IMax" as he
heads into the MRI machine

T's all smiles after his 3rd non-sedated MRI.
Yes, he still gets a donut.

He did great and held still through the pelvis and lower leg scans. This time the tech wrapped up T's legs in the sheets to help T keep his legs still. Travis spent ~45 minutes in the MRI machine and completed the scans around 10:15a. As always, the scans were sent to the National Cancer Center at the National Institutes of Health for the volumetric analysis. The doctor who performs this assessment emailed me, "His scan quality is great, he really did a great job holding still." No volumetric data back yet as of the end of September.

We spent the weekend (Fri, Sat, Sun) before school started at Miller Motorsports Park for the Pirelli World Challenge races. Another fabulous weekend with our amazing CTF drivers, owners, teams, crews, and supporters. Usually at the track, T separates from the effects of his NF. Unfortunately, this time we noticed the effects of NF chipping away at T's fun at the track. My heart broke seeing T's "safe place"/escape from NF being invaded by NF. He thoroughly enjoyed seeing 3 of his favorite girls all in one place: Jill Beck, Jill's daughter, and race car driver Emilee Tominovich. A recap of Racing4Research in Utah may be found here.

Quick view into some of the Racing4Research fun

Travis started 3rd grade on August 24th, his second year at our neighborhood school. Crazy to think he's in 3rd grade, the same grade as Nolan's last year in Cheyenne. While 2 of his best buddies are in a different class, he has his favorite girl at school and his friend who lives 2 houses up in his class. He really likes his teacher, Ms Woodruff, and she has a great gift for teaching. She is willing to learn about T's issues and how to help him. T continues to work hard and put lots of effort into his schoolwork.

1st Day of School for Nolan (8th grade - blue shirt), Barrett (6th grade - red shirt), and Travis
Notice how "Snowy" makes her appearance in most of the pictures.

Travis in front of his school

Saturday, August 29th brought the 5th Annual Utah NF Walk, once again held at Sugar House Park in Salt Lake City. The night before we picked up the cake donut donation from Banbury Cross...14 dozen donuts. I wasn't sure I would get T out of the car that night. ;)

T with 14 dozen Banbury Cross donuts, notice his smile/smirk.

Many thanks to Vanitta and Paul Conrad for bringing the boys to and from the NF Walk and keeping an eye on them at the event during Scott's dispatch at one of the wildfires along the MT/ID border. Thanks to so many, this year's NF Walk brought in over $20,000 for Children's Tumor Foundation. Travis enjoyed the Lowe's Build and Grow Kits, face painting, DJ, and donuts from Banbury Cross Donuts.

T eating one of the donuts donated by Banbury Cross.
These are the donuts he picks when he gets a "poke"

Front (L-R): Alicia Simons, T, Kelly
Back (L-R): Paul Conrad, Barrett, Lewis (Barrett's friend),
Patsy Simons, Steve Simons, Vanitta Conrad

T and Mom rocking the dolphin face paint

The volunteer photographer captured this pic of T. 

Since half of the individuals with NF experience learning difficulties, the professionals recommend neuropsych testing at 5 and again at 8 years of age. We learned 3 years ago that Travis experiences difficulties in visual-spatial processing and working memory, not uncommon with NF. Travis saw the same neuropsychologist on Mon, Aug 31st for his 8-year test/check. Travis spends the day completing lots of different tests, really narrowing in on how he learns.

T adding the dots to place stickers on each test he completes

Lunch break at "Red Iguana" (he at mac & cheese)

The neuropsychologist asked me to stay in the room for the first round of tests in case she needed me to "translate" anything Travis said and see if things start as a true reflection of him. We noticed Travis experiencing difficulties with the pattern copying using the yellow/black blocks, even with the 2 block pattern to be recreated. (This link shows a much more complex pattern with red/white blocks.) In the follow-up appointment, we learned that T went from being on the low end of the curve to being below the curve/chart in learning. My mom alert noticed things changing, but not expecting that much of a drop. The neuropsychologist also noticed a deficit in attention from 3 years ago and recommended exploring options for attention, including medicine. We met on Sept 24th to start the process of changing Travis' IEP. More information to come from the school in the next few weeks on learning and attention. We meet with Travis' teacher this week for parent-teacher-student conference.

Fun news...Travis started the fall season of Miracle League baseball on Sept 12th. He loves spending time at the field and playing ball. Making a great thing even better, his friend Jake joined our team this fall! :)

T batting in the 1st Miracle League Fall Season game

Having fun being silly after a game with his great buddy Jake

We decided earlier this summer to send off Travis' blood for genetic testing to see the deletion/mutation of his NF1 gene. We should hear the results later this year.

T getting his blood drawn for genetic testing.
No donuts at the clinic cafeteria, so he chose a pancake over walking across the bridge.

United Methodist children receive a Bible from the church in 3rd grade (I still have mine). Our church provides a fun gathering with lunch, scripture cookies, Bible crafts, and Bible bingo for the 3rd graders and their families. T learned how to look up scripture: book, chapter, verse; hearing the different names of the books in the Bible, and more. Such a fun time and hard for me to believe he's old enough for the 3rd grade Bible.

3rd Grade Bible Fun

We received the Shriners Hospitals for Children magazine in the mail the other week and this edition included T's story when he met Winter at Clearwater Marine Aquarium in January. (Blogpost here.) I still tear up thinking of this amazing experience.

Travis' story in the Shriners Hospitals for Children magazine

Lots occurring, yet T's spirit remains high through it all. He continues to make progress in PT and puts lots of effort into schoolwork. We see more pain in T's day-to-day life over the past several months and continue to pray for his enrollment in the MEK inhibitor clinical trial at the NIH. Life with NF remains a dance: sometimes you move forward, sometimes spin back, and sometimes both at the same time. Thank you for the continued prayers and support.