Down's sydrome and Keratoconus

[Loopy-Lou]

Hello Charlottes mum! Now that put a smile on my face to see how well Charlotte did, fantastic!

[sophietw]

Hi Angie,

I happened to read an article recently about specially designed spectacle frames for people with Down's syndrome, here's the website: http://www.specs4us.com/index.html

They are based in America but if you follow the link for 'doctor locations' it seems they have 6 stockists in the UK.

I hope Charlotte continues to do well with the contact lenses!

Best regards,
Sophie

[Charlottes mum]

Oh wow! This is amazing. Thank you so much for finding that!! Angie

[Charlottes mum]

Wow! Char did amazingly well at the eye clinic on Wednesday. Agnes got the (RGP) lens in her right eye with a fair bit of coaxing; Char blinked a couple of times, looked around the room and very excitedly said, “Everything’s clear and big!” RESULT!! She was fine; she kept it in for about 20 mins or so while Agnes checked the fit and the power of the p.script. The script does need altering very slightly but Agnes had expected that, she had already told me so last week. I had to practice putting it in and taking it out for Charlotte in front of Agnes so that she could show me the technique and that went relatively ok, I’m sure I’ll get good at it, Char was patience personified, she really was! Santa is coming to our house with a giant sack of pressies for sure!! We go back next Wednesday (16th) for Agnes to check how Char is getting on with the right eye lens and to (hopefully) scan Char’s left eye and (hopefully again) order a CL for that eye too. We came home with lens cleaner, rinse etc. I have put it in a pretty makeup case for Char (it’s in the kitchen cupboard out of reach though!) Agnes was so lovely, very patient with Charlotte. We were there from 11 a.m til half one and Charlotte was brilliant the whole time. She had taken her X Factor book with her and Agnes even sat with her and they had a little read and a talk about the show prior to any lens work! It helped enormously for Char to have that attention and made her extremely willing to have the lens in/out etc. I thanked Agnes for her kindness and patience; she said it’s nice to make time for Charlotte so that she feels confident at the eye clinic. A big medal for her then I think!

Back home Char let me put the lens in for her, her reaction was, “It’s all gone clear again but it’s blurry on the other side now!” She was of course referring to her left eye which is the most keratoconic and I told her how fab it would be if she could get the contact lens in that one soon too! She agreed and then spent about 20 mins running about the house, looking at her room and her JLS and Zac Effron posters! She was amazed at how clear everything was for her with it in. I felt so joyful for her because although I knew that she hadn’t been seeing 20-20 clearly like I do, the gladness in her voice and her happiest of happy moods was so uplifting to see. Oh my word, the lump in my throat was the size of a football. She’d had enough after half an hour and wanted the lens out (she’d been comfy the whole time but had had a long day and was tired), we had a bit of a job getting the lens out (about 15 mins), her eye was watering quite a bit but we did it and then after Char had a little cry and a cuddle I asked her if she would have it in again the next day and that it was best to keep on practicing so that I could get it in and out more easily each time we do it. She agreed that she would, and that any messing about at the moment is worth it because she can see better with the lens in. (Her words not mine) So we’ll continue to build up her wearing time as discussed with Agnes and just see how it goes next Wednesday in clinic. I’m so very proud of her. What a little star!

[space_cadet]

Reading how Charlotte has been with her lens has made me smile this evening. Who does she want to win Xfactor? I want Joe but my hubby wants Stacey to win.

Lea
xox

[Charlottes mum]

Hi. We were Team Joe in our house - just as well cos he won!!

And here we are another couple of days further on with Char still tolerating her RGP lens (right eye only at the mo)

[space_cadet]

*Yey* for Charlotte

[Charlottes mum]

Thank you all so much for your kind words. Charlotte is in high spirits ready for another visit to the eye clinic at Hull Royal Infirmary tomorrow morning and we are hoping to get the CL ordered for her left eye. If so, she could have it in time for Christmas!!

[space_cadet]

Hope that Charlotte gets her lens in time for Christmas so she can fully enjoy all the wonderful things that Christmas can and will bring for her

.... I'm in Leeds (so not overly far from 'Ull)

xox

[Charlottes mum]

Eye clinic today. Charlotte wore her (right eye) lens from 9.15 this morning (until 2 pm this aft. - her longest time!!) Agnes wanted her to arrive at the clinic with it in. It was Char’s first time wearing her lens outside of the house. She was quite excited as we drove out of the village, the big Christmas tree was lit up from early this morning and she could see it properly!

Agnes was pleased because she was able to scan Char’s left eye properly this time. Char wasn’t keen on the orange light but managed to keep still long enough for Agnes to get a good image to work with this time. When I asked her about the Hydrops she said that there is NO Hydrops in Char’s right eye.

She fitted a test CL in Char’s left eye and worked out the correct p.script for the lens. She said she would expect it to be ready by next week, hopefully Monday. She is going to phone me as soon as it is ready and we can go straight there for the fitting. Re Char’s right eye CL, she is very pleased with how Charlotte is coping with it, she had a look in her eye (yellowy drops in to check the fit same as with the left eye CL) and she said it’s very good. Sitting nicely where it should be. She is going to increase the power of the lens slightly though (she explained last week that she prob would) This is due to Char being a bit “wriggly” in the chair at her initial lens fitting appt. So all in all, another successful visit to the eye clinic. Into the New Year Char will have regular check ups to see at what stage her KC is at and to check how she is managing with her contact lenses. The great thing is that we have had such a good and positive start to her getting used to them. She’s doing so well, and coping amazingly! She was happy and chirpy at the clinic, high-fiving the nursing staff as she passed them down the corridor. Saying a cheery good morning to the elderly patients in the waiting room which brought a smile to many a face! Agnes was full of praise for Charlotte again, they greeted one another as friends it seemed. We were there just over an hour this time, so much quicker now Charlotte is more and more willing each time to have lenses.