June. A big month. Appointment #1 with Dr. Bocian to review Shea's blood work and full genetic make up. Appointment #2 with Dr. You, Pediatric Retina Specialist, to review any progression in Shea's macular atrophy. Appointment #3 with Dr. Muhonen, Shea's Neurosurgeon, to review Shea's fluid levels in his brain. Appointment #4 with Dr. Mody, Shea's Pediatrition, for his 6 month checkup. Appointment #5 with Dr. Whang, Ophthalmologist, where Shea will get prescribed his first pair of glasses. And finally, awaiting the scheduling of Appointment #6 with the Doheny Eye Institute to get a second opinion on Shea's macular atrophy...
It's exhausting just typing it out.
Currently we are 3/6 of the way there.
A lot was riding on our first appointment with Dr. Bocian. The blood work and gene testing would give us a very black and white answer if Shea's hydrocephalus is linked to something larger such as a disease or syndrome. The testing would also help us better determine the cause of the hydrocephalus. Not wasting anytime in the appointment, Dr. Bocian allowed us to exhale as her first words were that everything came back negative. A big moment... In addition, we learned that the cause of the hydrocephalus was not due to an infection during pregnancy but rather diagnosed as idiopathic. The biggest fear for us has been the unknown. We left the room that day and for the first time since our journey began, our family was actually able to leave with some answers.
Days after Appointment #1, we found ourselves where it all began, in our neurosurgeon's office. Dr. Muhonen could not have been more pleased with how Shea was progressing. An ultrasound showed that Shea's fluids had reached completely normal levels. Dr. Muhonen kept commenting on how happy Shea was. And as we walked out sharing nothing but smiles, Dr. Muhonen throws out there "now you can have #2." Haha in time....
Appointment #3, Dr. You dialated Shea's eyes to see if there was any progression in his macular atrophy. As we hoped, nothing had progressed. We are still on track with glasses but fears of potential blindness in one eye were ruled out. Shea was still showing a difference between the vision in his two eyes but the notion of how early we are detecting everything left the room optimistic moving forward.
Dang, so far we are batting 3 for 3. On route for a big June...
Shea is the man. He is all dude. He wants to grab everything, eat anything, and stand up whenever he can. It's crazy because everyone tells you how fast it goes, but Shea turned 6 months today. He has earned those 6 months and made the most of them.
Every night, we pray as a family together. It is the last thing we do before we place Shea in his crib. The last words we tell Shea before going to bed every night are to "no matter what, never stop smiling." Dude is listening.
Lots of love and smiles,
The Berger Family