Phoebe really enjoyed the waiting room. It has a train table, puzzles, some trucks. She was in a really good mood and we had fun playing.
She was also extremely hungry and ate almost her entire lunch! I noticed later they had a sign by the counter to not have food or drinks in the waiting room. Oops! Fortunately we didn't make a mess.
Finally we got to see Dr. C. Phoebe was very good about sitting in the chair and put her chin in the apparatus..... I don't know what to call it. I kind of had to hold her head to press her forehead into it more, so she didn't like that part and wanted to take her head out pretty quickly. We tried counting and then singing to her to get her to hold still longer. Dr. C said she still had quite a bit of inflammation and that she could see "cells" floating around in her eyes, I think in the "anterior". I didn't know exactly what that meant. She said that there are white blood cells in her eyes that shouldn't be there, they should be in her blood! I guess that is part of what happens during uveitis.
I asked how in danger Phoebe was of going blind. She said very low! I said, but her uveitis seems so severe. She said, yes, it is very severe, but she would not start to lose her vision unless it went untreated, like another year or so. We are treating it, so it is going to be taken care of.
We have to continue to do the hourly steroid drops for another two weeks. She also said to do the dilating drops cylogyl at night, to let her eyes rest with it, to help make her iris less sticky to absorb the medicine.
I know a concern before was not wanting to do "too much steroids", but Dr. C said another two weeks of hourly steroids was still not approaching the "too much" level.
Next, she wanted to test the pressure in Phoebe's eyes. She said that we should just try it and see how far we could get before Phoebe would protest too much-- she didn't want to make Phoebe hate her when they were getting on well.
How to test the pressure in eyes:
First, Phoebe was given some drops that sting, but would make her eyes numb.
Then I had to try and hold Phoebe still so the doctor could tap on her eyeball with a tool that would measure the pressure.
As you can imagine, Phoebe did not like any of this. Hell, I would not like it if someone tapped on my eyeball!! Ug!
Anyway, so I got to hold Phoebe and try and keep her flailing arms and kicking legs still, while she also tried to turn her head away and close her eyes. The doctor was able to get one tap on each eye. She said that ordinarily she would get several taps to get a better reading, but that was all she was going to be able to get. Actually, she did one eye twice because Phoebe was clenching and squinting so much that the reading was way off, like in the 90s. In the end, the numbers were something like 15 and 19. I have no idea what that means, but I guess it was not in a very abnormal range? I have no idea, but it wasn't fun for any of us.
Fortunately, Phoebe recovered quickly once it was over.
It was already like 12:30 and I had to be back at school to pick up Cordelia at 1pm. I also had to call Walgreens because I was basically all out of the steroid drops. I guess a small part of me had been holding out on refilling it because maybe Dr. C would say that we were done. But I knew that was unlikely. I knew she would say to keep doing the drops. But still, after the appointment, I was just so tired. And just so sorry for Phoebe that we have to keep doing this, and all these other things, to her, all the time. It's just a lot.
Cordelia started to have a meltdown in Walgreens because she wanted to sit in the umbrella stroller. I will not lie, I told her to hold it together and be quiet and we could go in the toy aisle and pick a toy after. I just could not deal with a meltdown. She still gave me her glare and didn't want to stand next me, but at least she didn't fall apart crying and yelling. She probably didn't deserve a toy because she still gave me so much attitude, but Phoebe sure did, so yes, Cordelia left with a PJ Mask look and find book and Phoebe picked a mini Mickey Mouse microphone that plays songs. We made it out of the store, which was all I could handle. 😓
In insurance news, we have hit Phoebe's deductible, which was covered by Jason's HSA. Now we will have to start paying around 20% of expenses, up to the individual out-of-pocket-maximum. A friend has also referred me to some services, but I still need to look into and apply for things like that. But in good news, Phoebe's eye drops were suddenly $0. Before that they were going to be $175, but then, as you may recall, the pharmacist gave us a discount card from the company and suddenly they were $25. I'm glad the insurance is covering them now, because I think that discount was only good for 6 prescriptions, and we went through 3 refills to get through our 2 weeks.
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