Oncology – Dr. Browning, children’s hospital’s oncologist specializing in neuroblastoma. She is also part of Zane’s team treating Opsoclonus Myoclonus Syndrome (ruled that out now). He gets a CT Scan of his neck, chest, abdomen and pelvis every three months to check for tumors. When he turns around 1 1/2 we will only be doing ultrasound checks to limit his exposure to radiation.
Speech- in between companies right now
GI- Dr. Alfonso Martinez, he put in Zane’s GTube. He also helps with Zane’s acid reflux. AND we see a Dietician when we go to these appointments too who sets up his feeding schedule. She figures out how many calories Zane needs to grow and tells us exactly what to plug into the feeding pump and at what speed and how many hour intervals he should have in between meals. She is super helpful because I can call her and we can switch feeds over the phone in between appointments and she adjusts it to what I’d like to try with him. Zane is now on a GJ Tube to his intestines (jejunum)
ENT- Dr. Robey, he did Zane’s supraglottaplasty to repair his laryngomalacia. He did his bronchoscopy also and diagnosed trachea malacia as well. We see him commonly for when Zane needs steroids because of airway swelling and anesthesia issues.
Neuro- Dr.Monrad will be part of Zane’s team for less often, about every 6 months or so. Mostly to refill his anxiety medication now that most his neurological signs are improving but she is there in case any signs return or anything strange happens.
NeuroSurgery– Dr. Foye, Zane’s brain MRI improved so much we no longer have to follow up with neuro surg! He used to have a lot of fluid between his brain and skull and now it is completely gone!
Genetics- Dr. Font Montgomery- they ordered the test that found Zane’s neuroblastoma. They also have been processing all his genetics information from his Micro Array to mine and Davids to now testing him for Costello Syndrome. We will see our first Rasopathy Syndrome Specialist in June (Costello is a Rasopathy Syndrome) Dr. Basel, will be our new geneticist
OT/PT/Vision Therapy- we are in between companies. Switching from Curative to Vision Forward.
Special Needs Clinic– Dr. Gordon , helps us coordinate our doctors together and also make sure we get resources available to us for disabled kids. And Our Special Needs nurse, Mary, is amazing and helps me with so much! She goes to all our appointments with us and helps me coordinate everything.
Eye- Dr. Brodsky, Neuro Pediatric Opthamologist, diagnosed Zane at Mayo Clinic with Optical Nerve Hypoplasia. Our new eye doctor is Dr. Patterson and we are meeting her in July for the first time
Pulmonary– Dr. Amos, she is also brand new to our team but I really love her already. We have done a sleep study so far and are discussing options for his obstructive sleep apnea yet.
Cardiology– Dr. Pelech, when he diagnosed Zane with enlarged heart I had no idea what we were getting into! He is there whenever we need him in a flash. Really happy with this doctor!