Disabled Daughter with KC & Hydrops

[Carleen]

Well, it's been 5 weeks since Jennifer was diagnosed with KC after suffering from hydrops in her left eye. Those weeks have been pretty awful for her - pain etc and us worrying about what is going to happen to her. I saw her today at her hospital check up and I can't get over the improvement since I saw her 2 weeks ago. She is much happier, has her eyes open more and the hydrops has diminished by about 75%. Her specialist was really pleased with her, changed some meds and answered all my questions. She has her next appointment in 2 months. Hopefully the opaqueness resolves as it is still quite large.

The doctor was adamant that corneal cross linking is too experimental to consider at the moment. She also said that her priority was “to do no harm” and since Jenn’s good right eye isn’t that badly affected then we should just leave it. If the XCL goes badly then we could risk damaging the sight in that eye. I’ll still keep her appointments next month with the private specialists and get another couple of opinions. I’m still very unsure myself. It’s ok taking a risk with your own health but it’s quite a different situation when dealing with someone as vulnerable as Jennifer.

Gareth, thanks for the advice regarding her hay fever. She now has prescription drops for her eyes which we hope will keep the eye rubbing to a minimum.

Andrew, It’s funny that even though the care giver was with me at the appointment, the instructions she heard the doctor give us regarding Jenn’s meds was different to what I heard. When I collected Jenn tonight to bring her home from the weekend the treatment schedule was “creative”. She’d even noted that Jenn’s “good” eye was to be medicated. I’ll have to confirm it all at the hospital on Monday.

I have real hope now that Jennifer will continue to improve and I’ll see more of the daughter I lost 2 ½ years ago (when we assume KC started to affect her). It was lovely seeing her smile so much tonight. We also went shopping today for more sunglasses and there were no tears. Usually when go to the mall it’s a nightmare as she hates the bright lights but today she was all smiles and showed lots of interest in all the people. We got 6 new pairs of glasses! The ones she has had for the last month got “lost” at her day base (not a bad effort for her 2nd day back) so now we are prepared!

I’ll keep you updated on her progress.

Carleen

[Lizb]

When you say medicated for her good eye, if you talking eye drops for hayfever for dry eye, neither are a bad idea as it will reduce and irration and reduce the chance of your daughter rubbing her eyes.

[Sweet]

I am so glad that your daughters hydrops is improving! That is great news!!

Keeping all the appointments is a good thing, as you will be better prepared with a lot of information from different professionals.

Do keep us updated! Love Claire X x X

[Charlottes mum]

A better day then. We need these to keep our spirits up don't we? Nice to hear about the "smiles". Angie4Char

[Carleen]

We had good night with Jennifer - I only had to get up to her once which is not usual. She also woke happy for the first time in ages - not so happy when the hypertonic saline went in though. She's getting a lot better with her drops / ointment though as I'm sure they make her eyes feel better. She's also watched a DVD for the first time in ages. For the last couple of years she just used to listen with her eyes closed so she's obviously feeling much more comfortable. I have all the curtains closed though as it's a beautiful sunny (and HOT) day here in Canterbury, NZ. Our sunlight is VERY intense so I have to shut it out for her.

Hi Liz, The care giver had written down that Jenn needed the saline and ointment in both eyes which was incorrect - only her hay fever and lubrication drops were for both eyes. I've written up a medication schedule that I'm going to fax to the hospital to confirm that my version is correct. If not, they will correct it for me. I'll have to wait til Monday to do that now since it's Saturday here in NZ.

Hi Angie, Yes the smiles are fabulous. She's also just more relaxed and happy so that can only be good for us all!

Hi Claire, Thanks for the encouragement. Lots of advice is what I need. I managed to get my first good look into her right (good) eye and it too has quite visible KC. Because she has had her eye's closed for so long now we hadn't been able to see what was going on. It's worse than I was expecting. It it was me suffering from KC I would probably have the coss linking done but I would also have the option of a transplant should things go wrong, which she doesn't. At least we don't have to make any decisions right now so there's no panic.

Off to get the wshing on the line now and make the most of this beautiful day. Our summer weather has been apalling - in act it's the coldest January in record - so a day like this is to be enjoyed. It's a shame that Jennifer can't get out in it.... Maybe tonight when the sun sets we'll get her out on her swing.

Cheers All.

[Carleen]

Got the meds sorted out today - the hospital and the home faxed me the Dr reports and they were the same AND agreed with what I had heard at the hospital - thank goodness. The manager of Jennifer's home has now got the correct meds schedule so things should be fine now. It just shows how careful you need to be when listening to the doctors. We quite often get bombarded with so much information during an appointment it's really easy to hear the wrong thing. The home's been really great though because if they hadn't been so good at keeping Jenn's eyes medicated she may not be improving as fast as she is. The home has decided to continue looking after Jennifers meds while she at her day base too. They don't want to risk anything being missed to I'm very grateful for their care.
Carleen

[Charlottes mum]

Good to hear more positives for your daughter. Good job you are "on the ball", best wishes. Angie4Char

[Carleen]

Jennifer's house manager is on the ball. She is going to contact the NZ Foundation for the Blind to see if they can provide support. I guess we'll need to try and assess Jennifer's vision before they'll register her. I'm not sure how we will do that since she can't read, speak or co-operate with diagnostics. It will be an interesting challenge for someone.

I'm still waxing and waning about the cross linking treatment. My family say I should get it done on Jen but I'm so scared that something will go wrong and it will be my fault. Has anyone had it done and what was it like? I have read that it is quite painful. Was it successful? Roll on 1 March when we see the specialist!