Finding an Ocularist

I've spent a lot of time on the phone lately with our insurance company and various medical practices. Our insurance company has been great and covers most of what we need ... we still have a nice deductible though. Last week's mission was to find a lab or nursing agency that would draw blood from Isaiah's port. That mission was accomplished when I found a local infusion company with RN's who make home visits. This week's mission was to find an Ocularist to make a prothesis (fake eye) for Isaiah. Isaiah's Opthalmologist at the Duke Eye Center uses Carolina Eye Prosthetics in Burlington, NC, but unfortunately they don't accept our insurance. A nice woman at Carolina Eye Prosthetics told me there is no ocularist in North Carolina that accepts our insurance, despite having one of the larger providers. I spent a little more than an hour on the phone this morning with an insurance representative who ended up conferencing in a doctor who provided a company in Greenville, SC. This 'Ocularist Clinic' accepts our insurance and does not charge a fee to travel to Duke University to get a proper fit for Isaiah. Great news because Carolina Eye Prothetics was about $700 more expensive (our minimum out of pocket expense).

I'm waiting for a call back from the senior ocularist early next week who will ask some questions and hopefully schedule an appointment. I would ultimately like the ocularist to come to Duke when Isaiah is already under anesthesia (CT scan, EUA) to get the fit. I'll wrangle that next week with insurance, Duke, and the ocularist. We'll then travel to Greenville, SC for a day for the final fitting. This will probably happen sometime in late March to mid-April.

I previously posted that Erica and I were concerned with our oldest son Levi and his reaction to Isaiah not having an eye and going through chemotherapy. Levi has spent a little time in Georgia with Erica's parents after Isaiah's eye was enucleated and for his first round of chemo. Our concern was that Levi was scared of Isaiah's eye and wouldn't play with him. Isaiah would try and play with him with Levi responding in anger as a result of him being scared. Since we've been home from the hospital and a little before Isaiah was admitted, the two boys would play together ... there are no more issues. Levi has even said he isn't scared of Isaiah's eye anymore - a miracle probably worked by Erica's mom & dad when he was in GA. We're still explaining to the boys that Isaiah will get a new eye soon, but he won't be able to see out of this one and that Isaiah has to see the doctors and take medicine to get better, but the medicine will make him sick.

I mentioned earlier that chemotherapy targets fast growing cells in the body resulting in lower blood counts, which makes it harder for the body to clot blood (injury) and fight off infection (white blood cells). I plan to post detailed information on this in the coming days to educate family and friends on what Isaiah is going through and also prepare everyone to understand the blood counts I'll put on here every week.

Isaiah and I shaved our heads on Friday before he started getting sick ... so we're now sporting skinhead style haircuts. At this point, Levi doesn't want me touching his hair. I don't blame him ... he has two perfect results of me & hair clippers around him every day.