Hi everyone,

I want to start by apologizing for the delay in this update on Mikey and our family. It's been a whirlwind of appointments, not just for Mikey but for the rest of us too. To say we've been overwhelmed is an understatement.

First, a heartfelt thank you to everyone who has reached out to support us—whether by dropping off food, sending gift cards, or providing snacks and meals. I can’t express how much that has helped us, making everything so much easier. Your kindness means the world to us!

Mikey’s Appointment with His New Neurologist

We had the chance to see Mikey’s new neurologist in St. Petersburg. It was a bit of a struggle to even make it to the appointment. We left after dropping Mallory off at school at 7:30 a.m. but didn’t arrive until 12:30 p.m., even though the appointment was at noon. Thankfully, they were understanding and allowed us to see them anyway, giving us ample time to discuss Mikey’s seizures. I’m really happy with the care we received, and I’m grateful that this neurologist is well-connected with the rest of Mikey’s medical team. Communication is key, and it’s reassuring knowing that they have full access to Mikey’s history and can coordinate his care seamlessly.

We’re going to continue with the seizure medication Mikey was prescribed, and we were also taught how to administer his emergency medication and when it’s necessary. The doctor wants to work with plastic and neurosurgery to plan a scan of Mikey’s head, in hopes of pinpointing exactly why the seizures are occurring. We already know from the EEG that the seizures are originating from the right side of his brain, but the cause is still unknown.

Additionally, what we thought were stomach issues due to his CDH may actually be related to his seizures. We’ll be planning further scans soon, but some will require Mikey to be sedated, which will need careful coordination.

Dr. Kays and the CDH Team

Next, we had an appointment with Dr. Kays, which is always one of my favorites. His team is like family to us! Dr. Kays was thrilled to see how well Mikey is doing. We didn’t take any photos because I was just so in the moment, cherishing the time with the team who saved Mikey’s life.

One of the main things we discussed was changing out Mikey’s G-tube, which he’s had since he was just a few months old. While it still looks great on the outside, Dr. Kays explained that after 4 years, the inside is likely not in the best condition. He recommended doing the change while Mikey is sedated since it can be a bit traumatic for little ones, especially if Mikey becomes upset and tenses up during the procedure. We’re planning to stick with the same G-tube style since it’s been so reliable for Mikey over the years.

A Special Milestone – 4 Years with Mikey’s Trach

Today marks 4 years since Mikey got his trach. I can still remember that day like it was yesterday. I wasn’t exactly thrilled about it at the time, and I struggled to understand why it was necessary. I was angry, confused, and unsure about the whole thing. But it turns out that the trach was absolutely essential. Mikey had no tracheal rings and a floppy airway, so a trach was the only way to prevent him from constantly being intubated and extubated. 

Mikey was sedated for over a week, but after that, he started improving significantly. It was like night and day—he became much healthier, and we began learning how to care for a child with a trach and all of Mikey’s medical needs. We had to complete a month of training at the hospital and meet several requirements before we could take Mikey home. I still cant believe that was 4 years ago

Upcoming Appointments and Plans

Next Thursday, Mikey will visit his ENT to plan when he can get scoped and check the cyst above his vocal cords. They also plan to balloon his airway to help open it up. Mikey will likely need a trach for the next few years, and that's something we won’t be addressing until he’s ready for his major craniofacial surgery, which will require a secure airway. But the need to redo his scripts and see Mikey and Plan for this upcoming procedure he needs done

After that, we’ll be visiting Mikey’s hospital dentist in Tampa. We’re hoping to make some time for fun too! Wish Berry Farms has invited us to the Strawberry Festival, which Mikey will love because he’s such a fan of live music—and, of course, strawberries!

Once again, I’m sorry for the late update. It’s been an incredibly busy and emotional time, but we appreciate all the love and support you’ve shown us in these past few weeks.

Thank you again to everyone who has been there for us. Your support means everything!

With love and gratitude,
Molly