Yesterday was a long day. We left the house after dropping the girls off at school, and then it was a 4-hour drive from Palm Beach to St. Petersburg, Florida. Our first appointment was with Mikey’s eye doctor, who has been seeing him since he was just a few days old. This doctor knows Mikey extremely well, which is one of the reasons we travel to St. Pete for his care. All of Mikey’s specialists have been involved with his care since birth, and they communicate easily and effectively with each other.

The eye doctor needed to check for pressure behind Mikey’s eyes, which is an important step for kids like Mikey, who have craniofacial conditions. This check helps ensure there’s no pressure buildup. After dilating Mikey’s eyes, the doctor saw no signs of concern. Mikey’s vision looked great, and although there was a bit of scarring from a previous surgery, there were no changes. So overall, it was a great eye appointment, and we’ll see him again next year.

After a quick break and a snack for Mikey, we headed to Mikey’s long appointment with his craniofacial team, led by Dr. Rottgers, his plastic surgeon. During these appointments, we stay in one room, and a revolving door of doctors and specialists come in to discuss Mikey’s progress and options for his care. We talk about everything from his development and teeth to nutrition, learning, feeding, and more—if it’s related to Mikey, we discuss it!

The team seemed really happy with Mikey’s progress. This is a kid who, as a baby, fought incredibly hard and has constantly faced obstacles and challenges. As parents, we are always researching, learning, and seeking information and help. Getting the opportunity to meet with these specialists and hear positive feedback is truly a blessing. It felt so good to see the doctors impressed with Mikey—he was jumping, laughing, playing, and being his happy, silly self. I even felt a few congratulatory pats on the back for being “good parents,” which is always a nice feeling when you’re in the trenches!

Mikey’s orthodontist checked his teeth next. If you’re familiar with Mikey’s story, you know that what we originally thought were stomach issues turned out to be seizures. These seizures caused significant dental issues with his front teeth, due to repeated vomiting and the strain from the seizures affecting the alignment of his mouth. The orthodontist was really happy with the SDF treatment we did with our local dentist—it was the best option for Mikey, and he was relieved we avoided surgery or pulling the teeth. Hearing this made me feel so much better about that tough decision.

As for Mikey’s plastic surgery, we’re in no rush to move forward with anything unless it’s necessary. Dr. Rottgers said we’re hoping to do his mid-face surgery around age 8, unless something urgent comes up before then. We’ll keep that in mind, but for now, we’ll wait and see. We also plan to meet with the neurosurgery team in a few months to talk about Mikey’s Chiari malformation and whether surgery is needed or if we can just continue monitoring it. Imaging will give us answers, or we’ll look for signs if Mikey’s condition starts to change.

In addition to the other doctors, we’re scheduled for testing with a psychologist in the coming months, and we’re looking into home therapy options as well. We still have more appointments locally this week, and next week we’ll be back in St. Pete twice for more appointments and testing.