I'm not sure where to begin. It's been months since my last blog post. It would take several very long chapters to tell all of our recent tales, so instead I’ll roll out the highlight reel, starting with Jacob, of course.
He and I are en route to Bethesda right now for his six month MRI at The National Institute of Health. I'm a bit more stressed than usual about this trip because the amazing neurosurgeon, Dr. Asthagiri, is no longer at NIH. We were notified last month of his departure and I’ve been sick over it, as is a large majority of the NF2 community. Dr. A was our NF2 rock and I feel a bit abandoned over his leaving. He did send Jacob and me a personal note saying that he would continue to see Jacob if it’s possible, and that he would continue to review Jacob's scan and provide surgery for Jacob if needed. I would like to think we have not seen the last of Dr. A, but UVA is a long way from Florida. With all of my anxiety and fears aside, Jacob and I wish Dr. A success and happiness in his journey! So, with all that said, we will be seeing a new neurosurgeon at NIH on Thursday, most likely an appointment spent rehashing Jacobs entire medical history. Exhausting! And sad. Not looking forward to that, or to the possible let down from the MRI results that could show the chemo isn't working. We were supposed to discuss radiation versus surgery for Jacob's right vestibular schwannoma to save his facial nerve and increase hearing preservation odds. That's not happening this week.
Medically, Jacob is doing well overall, or at least appears to be. Since his second fusion surgery, his neck is supported and his left hand function is improving. He continues to come home from occupational therapy with good results of positive changes. He’s back to opening doors and bottles and being able to do buckles and tie his shoes (all the things we can do easily that we take for granted). His physical therapy is slow-going. The side to side and up and down range of motion in his neck continues to be limited. The hyperextension in his leg at the knee isn't getting any better either. I'd like for Jacob to be more diligent with his at-home exercises, but he's a teen age boy and lazy is his middle name. As for finishing the 10th grade, it's happening! Jacob was assigned a very cool and patient teacher who comes three times a week and stays well over his paid one-hour sessions. Jacob completed and passed 10th grade English and History. He's very close to finishing Biology and just beginning Algebra, but according to TD, Algebra doesn’t seem that difficult for Jacob, which is a really good thing! School work is consuming a lot of his summer, but it's necessary. He's done a few fun things.
Well, that was a bit more than a highlight... Who's next?
Brie survived freshman year at Leon! And so did TD and I, but barely. Life is really tough on these teenagers, but I'm reporting positives! I loved watching Brie grow in her dancing this year. She loved her dance techniques class at school and continued with Jazz at Hannah's. We added Ballet to the schedule this year (my favorite!) and she did amazing in all her efforts. Brie's studio recital was moved to an old theater venue in Thomasville. I was a bit bitter about the drive for rehearsal and recital, but it turned out just right. Brie turned 15 years old that day, too. She was showered with flowers and treated to dinner at Osaka’s. My eyes still well up when I think about how much she's grown and how fast the time is going. My little girl isn't so little any more. A few days after her birthday, I had the honor of watching her dance again, but this time at Leon with her classmates. Let me tell you, they ROCKED it! All different types of dance were incorporated and Brie was perfectly in sync. She was even chosen as one of the eleven freshmen to perform a piece. Considering there are a large number of 9th graders, this was a big deal. Brie is going to move up to Dance II and continue at Hannah's. She's hoping to add Point to her list of classes.
I am very happy with Brie's grades. She did very well in all her classes, but still had to go to a summer prep class for Biology Honors End of Course Exam. It floors me that a solid B student can't pass the EOC and I haven’t yet decided whether it’s the student or the education system. I’d imagine it’s a little of both. She's retaking the EOC exam on the 23rd. When that is done she will be an accomplished, soon-to-be sophomore with 10 credits, two shy of being a junior! Brie is working on all the steps to get her FL driving permit. There's so much more to do than when I was 16, many moons ago! I'm thankful she will be taking Driver’s Education in the fall as well! And if you haven't seen Brie in the last few weeks, she's now a brunette, soon-to-be-returning-to blonde, or as G calls it, "golden hair."
Speaking of my little firecracker, he's awesome. Gavin turned a big four years old in April!! He finished Pre-K3 and got his very first report card. Yes, he did. He excelled at everything and his daddy and I sat in awe of how much growth his "work" showed for the year. More happy tears. Gavin also played his first season of spring tee ball, which was both entertaining and hilarious! I loved watching him learn the fundamentals of playing ball and I loved even more watching TD coach him. After six weeks, G and his teammates were starting to "get it” and really became a team. I think tee ball should last longer! We had a pizza party and G got his first baseball trophy! TD and I were (are) so proud. I already wrote about him swimming by himself and how good he's getting on his strider bike. G ran a one mile trail race two weeks ago, posting a sub-15 minute mile, but had a meltdown on the course after falling on a root. Poor little knees! His next one is this Saturday. He's also enjoying gymnastics and has conquered his fear of flipping over the bar alone. This week he's been busy helping me take care of our new bunny, Stella Ella. G will be starting VPK, five days a week, 9-12 in the fall. Yikes! I'm going to miss him.
Hey, guess what? I've been running. Haha! Still loving it and loving my Moms RUN This Town group. I’m running the Gulf Winds Track Club Summer Trail series and so far have found it a lot of fun. I completed my goal of running 100 miles in June and I've committed to running my first 26.2 in February. Exciting!!! Well, to me it is anyway.
I think I'm even more excited that TD agreed to do a triathlon with me (using “agreed” loosely). I’ve wanted to do a tri, but I'm scared of the swim. I knew that if TD swam with me I would feel safe. I was totally deflated to learn he would not be swimming with me due to gender and age. Operation triathlon is still moving forward, though. I'm going to suck it up. The swimming and biking has started. Have you ever heard of an exercise called bricks? Yeah, me neither, until this morning. Those started too!
TD continues to study for his CPA exam and fishes when he can, which isn't often enough. He had a birthday too, but after 30 they aren't worth mentioning, right? Especially when everyone’s sick. We took a mini vacation to St. Pete, went to Busch Gardens and enjoyed a beautiful day at St. George Island. Seems like it’s been raining forever. We’re ready for the sun to shine, or to see Noah, whichever comes first.
I'm sure you've read enough for now! I started in a new group I can't wait to write about and I will update about our appointments at NIH, but for now, good night!
Thanks for reading!
I will add pictures soon!!
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