It has been a while. 122 days in lockdown.
The world seems to be getting, slowly, back to normal.
We have ben shielding due to Terri being so vulnerable. I have been working from home and the only place I have been allowed to go is the shops if we need something (if I wasn't allowed there, I think I would've gone insane). I officially have a date for going back to work although I still don't know when I will be allowed to see my partner and friends again. But at last, I can see the light at the end of the scary corona tunnel.
If you have read my other posts, or know me, then you will know that at the beginning of the year Terri had her eye removed. She had a detached retina that was unfixable and the eye was causing her pain and discomfort. It was a big decision for the family and heart breaking to do, but on the 15th of January, the day after her 17th birthday, the eye was taken out.
We were hoping that this would be the end of the problems with her eyes. Unfortunately, not.
During lockdown we noticed Terri's eyes (both the removed and the one she still had) were gunky and causing her problems. She would sleep all the time. I think this was to avoid the pain she was in. She got pseudomonas in her eye and gastrostomy tube. The poor kid just can't catch a break. Watching her play was difficult, hearing her say she couldn't see.
A couple of weeks ago she went for a routine appointment at Newcastle Hospital to check how her eyes were getting on and they found that her good eye, was not good at all. We had noticed that her eye looked cloudy, or like there was a contact lens that has slipped. The doctors confirmed it was a corneal ulcer and if it wasn't treated she risked losing her sight all together. They made the decision to keep her in for an emergency operation in which they sealed her eye up half way. The intention of this was to cover the ulcer with her eyelid in order to give it a chance to heal. Terri has suffered with dry eyes etc. all her life due to her eyelids never actually fully closing. She even sleeps with her eyes open (creepy, I know).
The operation was a success and she came home. The next few days were hard, she was fully blind and still as determined as ever. I guided her round the house when she was looking for something and passed her anything she was searching for. She never complained. Not once.
During lockdown videos were coming up on my Facebook Memories of 3 years ago. There she was, with both eyes and walking. It is hard to see how much she has deteriorated over the past couple of years. She essentially now has half an eye, she is completely deaf without her implants and can no longer walk unaided.
We are still waiting to see the effects of the eye operation, with her eye sight now back in that eye, the healing process is what we are focusing on. In hope that the ulcer will heal.
I know Terri is vulnerable. I have always known she required extra care, but seeing her recently, it is getting harder to ignore just how susceptible she is to things that we cannot control. She has always been a one for proving doctors and specialists wrong, improving rather than deteriorating but Cockayne Syndrome is catching up with her now.
We have watched for years as her friends come and go, those who we knew from the beginning of her diagnosis and new friends made along the way. It is hard to accept that one day, Terri will be one of those friends too.
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