After getting the Pirate (eye) patch, we discovered in the wee hours of the morning that Jeff is allergic to the surgical tape glue they used to hold the patch on. Poor guy looked like I had hit him with a hot iron! So we were given the go-ahead to ditch the patch, and start both eyes on steroids.
We'll return to "see" Doc Benson in mid-August for a progress check.
In the meantime, we have gone to Michael's to get some things to try his hand at some artistic pursuits that are new to him - modeling clay and such. Those will be a little while before they get used. He has been pouring into learning Braille.
You'll see a picture of Jeff and the baby sleeping - I thought it was very sweet that the baby snuggled up so close to him while he was resting after some hard study time.
You can see some of the new Braille tools we have in the pictures, including the super-handy printed instructions for how to use the Braille Label maker!
I took Jeff for a brief overnight trip to Pittsburgh to pick up icons another artist was commissioned to make for our church. While we were there, he showed me a great breakfast place that he has been talking about for a couple of years now. The baby enjoyed spending time walking at the outdoor table with us!
We had a handicap-accessible hôtel room. That was certainly a different experience seeing the amenities they try to provide. As we walked from the parking areas to the hotel room, breakfast place, etc, it was equally interesting to see ways in which visually impaired folk are barely given a second thought for accommodation and safety- and to begin to understand more of what works, and what doesn't.,
Some have asked if any of his sight has returned, and he says perhaps 5-10%, where he still cannot make anything out per se, In the pics with his nose pressed against the screen of his cell phone, you can get an idea of what he can do - getting that close allowed him to see that there was a blown-up picture of himself with his label maker.
How much more might we get? I don't know. But we were reading aloud from a book about the life and teaching of St. Seraphim Off Sarov, in which the blessed Saint healed people thought to be irreparable. In the meantime, we're taking it one day at a time.
Jeff and I drove to Pittsburgh this weekend to pick up some icons to bring back to the church. It was a trip originally planned to take place last March, but then the world stopped for Covid. Then the world was shaken again when this whole eye infection started.
Last week we got in some new things to help organize the kitchen in a way that he can begin to navigate in there more confidently. We eagerly were waiting for his new Braille things to arrive. And thinking of ways he might be able to continue working on things like the gold leaf at the church.
In the meantime, we were also in touch with his VA doctors and case manager, who advised us to apply for the VA Caregiver Stipemd, Social Security Disability, and increasing his VA disability rating since this is not going away any time soon (we're looking at sometime early next year.)
In looking over the mail from the weekend, we have been denied the Caregiver Stipend for the amount of time I need to be around to help him - their comment was that he should get into a blind rehab program (thanks, VA ). The SS office and VA disability will require more information - they are unsure of his blind status maybe? The paperwork and legwork for those will take up much of the next two weeks, I expect.
In the meantime, his new Braille goodies arrived today - including a way to keep socks matched! Who knew there was a solution to that out there all along?? So we spent the afternoon learning the alphabet (he feels like he about has that down already!), exploring abbreviations, and trying out his new reader pen. When you have 2500 books in the house, not having a way to read them is a real kick in the shins!
We are busy doing all that needs doing but really excited at what we're doing to move forward in a stronger position, and are so glad to get your messages and letters. He can respond verbally to texts now too if you are of a mind to send one! Check out the FB update on his page to see pictures of some of what we did today.
more to come
Jeff's energy is coming back some now that he's come to the end of the antibiotic eyedrops and is now working with the steroid drops. With the help of our older sons, he has found ways to get back into the gym for some weightlifting, and has been able to go out with Melissa on excursions to the grocery store or on short walks. He feels like he can say he has about 10% of his vision back - but that does not mean as much as it might sound. At the periphery of his vision, he can see shapes, patterns, and colors. But nothing concrete, and still only light and dark colors directly in front of him. All the same, this is an improvement to work with so we are running with it.
In the meantime, we're eagerly awaiting new materials to learn to read braille, and tools to help him better function in the world more independently. We have also begun working on getting tools in place to navigate the house more safely. You never think about little things like how well something is organized, or having handrails on the front steps as being so important until you need to use them to navigate the world without sight. He still has increased sensitivity with all of his other senses - what they say is true: Lose one of your senses and all the others become much more sensitive. It is like sending the brain into high alert all the time. On the plus side, good food tastes even better than it normally would.
We have begun talking to Jeff's doctors with the VA and syncing up his increased medical needs with the care he receives from them, and are waiting out the next three weeks in anticipation of whatever changes will come next. We'll update again when the new Braille box arrives!
Thank you all again for your continuing love and support. We would not be able to get many of the braille supplies, and safety tools that he needs without you all.
Last Tuesday we saw Dr. Benson and Jeff was put in a patch until Friday "at noon!" Thursday morning though, Jeff needed to take off the surgical tape because it felt like his skin was being burned.
As we took it off, I could see where he had gotten a chemical burn from the glue in the tape - in fact, it looked like someone had taken a hot iron and held it to his face!
Back to Richmond with us so the doc could look at his eye and decide if we needed a replacement patch or if we could move on to steroids in that eye too. The doctor and hung this assistant both looked and said he is cleared to do the steroid drops! No more antibiotics woohoo!
I finally got some answers (sort of) to some FAQs too - so, we do the steroids for a month, and continuing on until the whites of his eyes are white in their own. Once that happens, he'll be added to a surgery/transplant list. - as of right now, because of the shelter in place stuff, they are scheduling operations into Next October. That means we are looking at December at the earliest but more likely January-> April sometime. As to cost... the doctor is not the one to call for those answers, so I'll be calling the insurance company tomorrow as well as a lawyer about the contact lens solution.
in the meantime he feels like he can see about 10% of what is around him because of regained vision. We'll continue to anoint him with the holy oil, and build strength up with a good diet, and his increasing ability to get back in the gym or take walks again. we are so glad for small steps forward.
Saw the doctor yesterday. He is pleased with Jeff's progress, but one eye is doing better than the other. They put him in an eye patch. We'd like to know: couldn't they at least spring for a cool leather pirate patch?? Or maybe offer them as something we could purchase? 🤨
Anyway, it comes off Friday, and we begin drops in that eye too. The other eye will get steroid drops all this week.
As to whether his vision is coming back "at all"? That is a relative term - so in terms of "at all", strictly speaking yes. It has returned enough in his peripheral vision to see that the kids have their feet on the furniture or have left toys on the floor - but not enough to see the details of *what* the toys are. Enough to remind the kids that Blind Pop can still call them to task though! 😂
We will not have any kind of timeline for corneal transplant surgery until at least six weeks or so, because we are waiting for the whites of his eyes to be white again. In the meantime, he is easing back into his gym workouts with the Big Boys helping, and keeping a super healthy diet so he is as strong as we can make him, inside and out.
Pirate pic will be on my FB timeline. I don't see a way to post it here...