Don't be discouraged

I've been thinking a lot about how things have gone with Joel. When we first started on this PHPV journey, I was sure he would be one of the "lucky" ones and get great vision from his eye, it would look as normal as possible, it would grow and we'd have minimal trouble with it.

The fact is that we have had a bad outcome from our situation. He's had 3 operations and still nothing and the surgeries have made his pupil very misshapen and his eye black and unseeing. It is not a good outcome.

I just don't want any other parents who read this to be discouraged. There HAS to be good outcomes with some PHPV kids. Why not yours? Why shouldn't your baby be one of the miracle outsomes? Keep believing for that. I've seen photos of some and read stories of others who have had amazing results. Just because we haven't had the dream outcome we wanted, doesn't mean that your child won't get that, that they may be able to see, their eye will look and function as normally as can be expected with a birth defect and that people may not ever notice there is anything wrong with their eye.

And, you know what? Even if they DON'T get the outcome you want, they will be fine. You will be fine. Gradually you will come to an acceptance about things and learn to love that little eye staring blindly back at you. It's so easy to love a baby when they are "perfect" but when you have to deal with a birth defect and the grieving process that goes along with that, that is when you can really feel and define unconditional love.

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.