True All Stars & Baby Isaiah Update
First, as most of you know, some of the specialists that see Isaiah were concerned about his little noggin. As of the last post, they had ordered an appointment with another specialist, and Isaiah and Mommy stole Aunt Meg and the three of us bounced in to our appointment with Dr. S. She not only confirmed what Dr. P was concerned about with Isaiah’s head, she actually suggested the concern was a little greater not for plagiocephaly (which was the first concern), but more for something called craniosynostosis, with the “fix” being neurosurgery. She ordered at CT scan of his perfect little head. Quickly. If the CT scan confirmed the concern, neurosurgery would need to happy within 3-4 weeks so that the skull could be repaired before any further hardening or growth occurred. So we got through the CT (WITHOUT anesthesia cuz Isaiah is a superstar!) on Friday, August 8. And we waited. Every medical decision we make for Isaiah comes with the full awareness and advice of his medical “team” which includes Dr. P (his geneticist) and Dr. White, the greatest pediatrician on earth. And I want to point out that when the CT was ordered earlier that week, we called Dr. White to get her thoughts. While she agreed we should get it done, she was CERTAIN it would reject the diagnosis, not confirm it. She said she would be STUNNED if their concerns were confirmed. It gave us a great deal of added hope, and while we knew we’d deal with no matter what the CT scan said, it was nice to hear such confidence from the doctor who sees him most…
On Monday, August 11 (yeah, the 11th, shocking, right?), I happily posted this note on facebook to share with friends after calling our family and super close friends personally:
Woke up this morning with this scripture in my heart as we awaited Isaiah’s test results to see if we’d be headed for neurosurgery for him in the next few weeks.
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”
We knew we would be thankful not matter what the CT scan said, although we prayed nonstop for no neurosurgery. Then at about 7:50 am, my phone rang. The greatest pediatrician on earth called, emotional and joyous, with this: “Michelle, sometimes doctors are wrong. They were wrong! I told you they were wrong!! Isaiah’s tests are perfectly fine!!!! He’s perfect just like we knew he was! He just likes to sleep on his left side! We’ll deal with it!”
We are overjoyed. Thank you for all the prayers, all the love, all the thoughts for our sweet boy. SO incredibly thankful they got this one wrong. And so thankful God put it on their hearts to check! Now we know and we can deal with a crooked noggin. Helmet painting party perhaps? Love you all so much! Best medical team on earth cares for our baby boy!
So… what does this mean for Isaiah? It means that he gets to have another round of tests. He gets to have another scan of his head, one that will give us a measurement. They’ll then tell us if the helmet that can correct this unusually-yet-perfectly-shaped head is medically indicated (meaning, is it just cosmetic? Or is a helmet needed to correct the shape so his development or brain function won’t be impaired in any way?). Once we’ve got that information, we’ll consult with Isaiah’s medical team again, and make some decisions as his parents as to whether or not we’ll get his little head in a helmet for what may be 3-9 months. We’d love some prayers that our cutie just has a cosmetically different melon. That’d be awesome. Either way, we’ll deal with it!
Ok, onto more AWESOME stuff.
Playing with a Purpose (on CBS):
On Saturday, August 2nd, Isaiah’s story and our foundation was highlighted on CBS nationwide on a PGA TOUR production called Playing with a Purpose. We couldn’t be more honored and humbled to be chosen to join so many other amazing charitable causes highlighted each year in this very special hour. Paul and Webb were out at the WGC in Ohio, but thanks to bad weather, were actually able to watch the special while it aired. Meanwhile, I was back in Ponte Vedra with some great friends huddled up on our couch watching (and crying!).
For those of you who have asked because you missed it, you can click here to watch the entire segment. A HUGE shout out to Jason Folladori with PGA TOUR Entertainment, who spearheaded this entire effort. We are so thankful!!!!!
Week of Giving Back in North Carolina:
When we got the call on August 11 from Dr. White, our family was in Raleigh, NC as co-hosts of the Tenth Avenue North Classic with our friend Kevin Streelman and the guys from Tenth Avenue North. This golf tournament was held at Prestonwood Country Club to raise funds for 5 charities, including the Tesori Family Foundation. What an AWESOME day. It may have started out with the best phone call ever from Dr. White, but it continued on throughout the day with some of our closest friends on hand as an amazing group of folks golfed and partied and celebrated while we all raised money for these incredible causes. Huge thanks to our crew at Olympus Foundation Management who manages our foundation, especially Kellie Nelson, Jennifer Perry and Bonnie Upright, who were on hand and in their fabulousness, as always. We are forever grateful to you for making this so special for our family.
Paul and I had prayerfully considered what we wanted to do with any money our foundation received from this amazing golf tournament and dinner. Several months ago, we met with our friend Mark Brazil, the tournament director for the Wyndham Championship in Greensboro, NC. Out of that meeting, an idea arose. What if we held the first ever First Tee Clinic for kids with some extra special stuff (maybe it’s an extra chromosome, maybe it’s something else a little extra in the development of these amazing kids) and did it the week of the Wyndham Championship? And the Wishes by Wyndham All-Star Clinic, the very first of its kind, was born. On Tuesday, August 12, the Tesoris headed west on I-40 to Greensboro and joined up with a bunch of our friends at the Wyndham Championship. Our “dream team” included, of course, Mark Brazil of the Wyndham Championship, but also Steve Holmes (CEO of Wyndham Worldwide), Mike Barber (First Tee of the Triad), Bobby Long (local businessman, philanthropist, golf hero and the chairman of the Piedmont Triad Charitable Foundation’s Board of Directors), our cheetahs from OFM, PGA TOUR pro Doug LaBelle, caddies Frank Williams and Scotty Gneiser, the golf team at UNCG, tons of volunteers from the First Tee and our new friends at the Grandover Resort who hosted the event. A big thanks to Sunbrella for showing your support and the great local golf shops who participated with some great donations. And a HUGE shout out to our best buds at Izod who provided so many incredible goodies for our kids. We LOVE #teamIzod!
Because of all the support, 25 kids with diff-abilities (aren’t we ALL differently-abled?) joined us for one of the most rewarding days of our lives. It was hot. Like H=O-T, HOT. But that didn’t stop anyone. With the guidance and equipment from the First Tee, an event that will now continue for years to come exceeded all expectations. The kids, the parents, the siblings, the volunteer coaches, the staff, and our family had the most incredibly rewarding day. There were more smiles than I recall ever seeing at one event in my life. More hugs. More love. More happiness. More cheer. Pure JOY. Paul and I are truly overwhelmed at the entire experience.
Steve Holmes saw Paul on Wednesday during their practice round and told him he still had goosebumps, that it was the greatest event he’d ever been a part of. Mark Brazil has already confirmed that we’re on board to do it again next year! We couldn’t possibly appropriately express our gratitude to Steve and Mark for helping make this all possible. And Paul and I are working with some players on TOUR who’ve expressed and interest in partnering with us to bring the All-Star Clinic to their hometown. We couldn’t be more excited at the opportunity to expand this amazing event and touch even more lives. Most importantly, what we’ve gained from the experience are 25 new families that we will forever call friends. We love you all very much and are so thankful that you took the time to come hang out with our little family on a sweltering Tuesday in the Triad.
For more information on our All-Star Clinic, stay tuned here or follow us on facebook. We can’t wait to bring the clinic all over the country. It’s like a Hug-Fest… traveling all around… with some golf clubs. I can’t flippin’ wait. Check out some of our photos below… I DARE you not to smile…