Support websites for parents

I haven't posted these websites in a while, so to save any new people to the blog having to search through, here they are.

http://www.facebook.com/#!/group.php?gid=58073768937

http://health.groups.yahoo.com/group/phpv/


http://www.losteye.com/

http://www.visionaustralia.org.au/info.aspx?page=1510

Micropthalmia

http://www.maparentsupport.com/

http://www.facebook.com/group.php?gid=123750425284

http://supportgroups.ning.com/ ---> search for micropthalmia


and I have a new picture of PHPV eye:

http://www.mrcophth.com/opticdisccases/phpv.html

Contact lens help, patching, shells, conformers etc General info:

http://health.groups.yahoo.com/group/aphakic/

http://www.allaboutvision.com/conditions/

Met some other parents and kids

So today we went to visit the Ocularist to talk about Joel but also to meet two little girl's who have prosthetic eyes due to micropthalmia (the abnormal smallness of one or both eyes) Joel's PHPV is micropthalmic.

The first little girl, Emelia who is 4, poked her head out from behind the door and looked straight at me and I could not even tell she had a prosthetic eye. I was kind of waiting for someone to bring the "real" Emelia out haha. She was a gorgeous little girl and she and Annalise got along really well, playing and laughing. I saw the Ocularist remove the eye, he made it look so easy! Next we met another little girl who I think was being fitted for her first eye. She also had micropthalmia but also had what appeared to be a cataract or very cloudy eye. We met her mum and dad and also Emelia's mum and grandmother. It was so good to be able to talk to people who understand, who don't say "Oh well, it's just an eye" or "at least he can see out of the other one" or the most annoying "it could be worse". The other parents and the Ocularist seemed to understand that these were our KIDS, our babies and whatever happens to the them causes us some pain and is hard for us to deal with. That it is a real issue in our lives. I am so hapy we went.

What they are thinking of doing for Joel is using the contact lens that we already have for him, as we know that it fits, and painting an eye over that so it will look similar to his good eye. We go back on Thursday with the lens to have a proper consultation.

Ocularist

It has been on my mind for a while to start looking into doing something about the cosmetic appearance of Joel's eye. Every time we go out, someone will comment on it, usually along the lines of "does he have a sore eye?". The iris is very dark and the pupil is huge, giving his eye the appearance of being just a black ball. There is that, plus the fact is it starting to get quite noticabley smaller than the other eye. It will only be through God that he gets vision, so between now and then we need to look at helping his face to grow while the eye isn't growing.

I have just spoken to a man called Paul who is an Ocularist here in Perth (an Ocularist is someone who specialises in creating and fitting artificial eyes). He has suggested that the best way to go is to put a false eye over the top of Joel's natural eye. I have renewed hope now that Joel will look just as normal as the next little boy and I am so happy because there is a picnic in Kings Park in a few weekends time for all the kids who have artificial eyes!! I will get to meet other parents who have little kids with artificial eyes, contact lenses, conformers.... I am just so happy that his eye is going to look a lot more normal than it does now and I am really looking forward to meeting the other parents and seeing the other little kids.

This is the place I will be taking Joel, I need to send them an email to make a time to take him:

http://geelen.com.au/

And this is the link to the picnic. What an amazing thing that I called today, this is on in 2 weeks. Love how God works ;-)

http://geelen.com.au/eye-support/summer-picnic-in-the-park-2009/

Hand, foot and mouth. What next!

Poor Joel has hand, foot and mouth (also called Coxsackie Virus). He has blisters on his hands, feet and around his nose. Thankfully none are in his mouth but he does have ulcers. He is still 100% breastfed and I really think that is what is helpling to keep them from spreading to his mouth. Being constantly saturated by breastmilk is protecting him. Whenever he gets sick, his PHPV eye goes red and looks "sick". It is the first indicator to me that he is unwell. He has been waking every 2 hours at night and screaming for between 2 and 3 hours. Last night we almost took him to the hospital but then he fell asleep after an extra dose of Nurofen. I took him to the doctor today and he suggested we give him Painstop - usually recommended for kids over 1 but I am sure it's nothing compared to the drugs he's had through his system with his surgeries.

I am waiting to go back to PMH, even if I do see a Registrar. I would like to go there before Christmas so next month I will ring and make an appointment. We are seeing Dr Lam privately on the 14th January next year.

Even if he doesn't have any vision in that eye, I would still like to start looking into something to help the cosmetic appearance of the eye. He will be 1 in January so I think it's time to start looking into that.

It really does feel that his whole life so far has been spent battling illness, recovering from surgeries, visiting the hospital or having check ups at the doctors. This latest illness is just another thing he's had to deal with. I feel more like his nurse than his mum, always administering antibiotics, drops, pain relief. He's such a good little boy. He hates having drops and medicine, as soon as he sees the bottle or syringe he turns his head and makes it so hard to get anything into him. I don't even want to think of the cost of all the drops and Panadol we've wasted! He twists and turns and wriggles and is just so strong, he's such a little fighter!

Along with worrying about Joel, my mum is having a CAT scan tomorrow as the doctors have found a lesion on her lung that hasn't responded to medication. She has never smoked, lives a healthy lifestyle, doesn't drink, eats well...I am just praying it's nothing.

One of the girls from church has organised our dinner for tonight and Rich's work sent through a big box of chocolates for me. I am so blessed to have amazing people in my life and I think it's just amazing how God knows what we need before we do.

Private appointment and latest with infection

I called Dr Lam's surgery yesterday to get in to see him privately so I don't have to to go through the public hospital system any more. The earliest appointment I could get is the 14th January 2011. That's the day after Joel's first birthday.

I feel like NOTHING is happening. No one has looked at his eye for a month, I have no direction for where it's all going. I don't know if we'll end up back using the lens, getting a conformer, a coloured contact. I just have no idea what the next step will be.

As for his eye, the infection is clearing up. We are still using drops and I'll just keep using them to make sure nothing comes back. I have also noticed his eye is starting to shake a bit. I'll be glad to go back and see someone at the hospital before I see Dr Lam privately, I know that's an appointment I'll be able to get.

Bad eye day

So yesterday he didn't open his eye for the whole day, it was swollen and red. I put more Chlorsig in, every two hours (Chlorsig is used to treat conjunctivitis amongst other things. It used to be available on prescription only but it's now over the counter). This morning the eye looked a tiny bit better so I thought I would see how it was by the afternoon. We went to a birthday party and by the end of that it was looking pretty bad still so off we went to the hospital again. We were in and out fairly quickly. He has more Chlorsig drops plus Amoxil antibiotic. It is slightly infected. It looks like it's giving him some pain, he had Panadol and Nurofen yesterday. Pics to the right show what it looks like. Poor little guy.

Regret

I've been thinking about it and there is one thing I regret doing and wish that we hadn't have done. The third surgery. The one to drain the blood from the eye. When I look back at photos of him from a day or two before the surgery, the blood was beginning to drain on it's own accord anyway. I wish we never agreed to the doctors going in and draining it for him. The third surgery was the one that caused bleeding behind his eye and has stopped him from seeing. There are pics on the right side of the blog showing the hyphema (blood in the eyeball) the day before the surgery and you can see his pupil and it was small and round. After the third op it's shaped like the number 8 and it takes up most of his iris. If we didn't do that operation, maybe the blood would have gone away on it's own accord, maybe he'd have no blood at the back of his eye, maybe his pupil would be a normal shape.

Maybe he'd be able to see.