We are all set to get a prosthetic eye

I have met with the Registrar at PMH and he has spoken to Joel's surgeon and they are happy for us to proceed with getting a prosthetic.

On one hand I am really happy that Joel will be getting an eye to help his bad eye look a bit more "normal". On the other hand I am a tiny bit sad because it's basically saying he will never see out of that eye. I am starting to come to terms with that though, I have probably dealt with it as much as I can and have accepted it. Because the hospital is happy for us to go ahead with the prosthetic, they will cover the cost. We just have to wait for them to send a letter to Geelen and then we can meet with them again.

Here is a link I found to a website with lots of pics of kids and adults with shells.

http://www.maparentsupport.com/prosthetics_and_ocularists

Anterior Chamber Hyphema

After Joel's second surgery, he developed an Anterior Chamber Hyphema and then had a third operation to drain the blood from that. I believe the hyphema was caused by the surgeon pulling part of the iris away during the second oepration. The blood that went to the back of his eye, caused by the complication from the second op, is what is preventing light from getting through and causing his blindness.

I just can't seem to get over the fact that it happened. That an experienced surgeon would make, what seems like to me, an elementary mistake. I have done a lot of research into the rate of this sort of complication and it is very small. This is all leading me to question whether or not our preferred surgeon, the one we requested through our private health insurance, is actually the one who did the operation or if the Registrar who we saw in the weeks leading up the operation was the one allowed to do this to my baby boy's eye.

This is some information I have found on the anterior chamber hyphema.

http://emedicine.medscape.com/article/1190165-overview

Last week, I spoke to a different Registrar at PMH to ask what they believe the next step should be. They agree that he should get a prosthetic eye which on one hand is good because that means that if we are referred back to the Ocularist by PMH, they will cover the cost of the eye. On the other hand, it's NOT good. This means that we are giving up on any hope of him getting any vision from that eye, for it to heal and look better. I know it's been ages since his last operation but I have found myself hanging onto some hope that his eye will just one day look exactly like the good one. I know it's not going to happen but there is a part of me that doesn't believe it. I know God can heal him but then I feel like I am being some sort of religious freak by keeping that faith. It's so hard. If I cover the eye with a fake eye, how will he ever see? It won't be getting used at all.

We are going back to PMH in the next couple of weeks and I am going to ask for Joel's medical records. I want to know who did that surgery and I think once I know that I will be able to put all my worries to rest and move on with the next step.

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.

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.

Annalise is asking questions

The last two days, Annalise has said things about her little brother's eye. Yesterday she pointed to him and said "his eye is all sore, what's wrong with his eye?" and then this morning in the bath she said "poor Joel, his eye is sore". She said "can he see?" and I told her that no, he can't just yet but if we keep asking Jesus, one day he will be able to see. What else do you say to that? Breaks my heart. His eye is gradually looking worse and worse. It's not helping that he's got conjunctivitis but the iris isn't going a green colour like I thought it would after we stopped using the drops. It's stayed a really dark, almost black colour.

What am I going to tell Joel when he starts asking about his own eye? I think about it alot, what questions he will ask, how will I answer them?

Joel is sick

He has an ear infection, cold and the worst part - conjunctivitis. His good eye is all gunky and gross and his bad eye is much smaller and redder than it usually is. It's so unfair. I just feel so bad for the poor little guy, he can't catch a break.

He's slept a fair bit today but has been up most nights. I knew he was sick on Tuesday so I tried to get him into his usual doctor but couldn't, so I ended up paying $60 to see a private GP who gave him a quick check over and said there was nothing wrong. We were up from 11pm- 3am that night so I got him into his regualar doctor yesterday and sure enough, an ear infection. He's got antibiotics for that, then today I saw his gunky eye so back for more drops for his eyes. I really hope it clears up soon, it's horrible watching him not being able to see properly out of his good eye.

I've uploaded some pics of him this morning, before the conjunctivits really set it. He's got a little bruise on his forehead from playing with the "big kids".

The latest from today's appointment

The white "stuff" in his eye that looks like spider web is scarring but it's not on the iris as I thought, it's actually on the cornea. That means it's not on the inside of his eye, it's on the outside. The most likely cause of it is the incision from the second surgery. This is pretty good news, considering. The registrar (again we didn't see Dr Lam, we saw a new registrar called Johnaton, he was really very good) said that more than likely it won't grow across his eye, and if anything it should fade over time. Woohoo. Good news again because this means that it won't grow across the pupil, further obscuring any vision he could possibly get from his eye.

His pressure is 25 which is ok. I asked again about a conformer or some way of dealing with his eye being small but was again told it's too early and that he's been through enough and in a year or so if his eye is "cosmetically unacceptable" they will do something about it.

He still has no red reflex so the blood is still at the back of his eye. KEEP PRAYING.

All in all, I am taking it as good news. His eye is no better, but it's no worse so that's great.

We don't need to go back for another 4 months but I am actually going to book in privately to see Dr Lam for our next appointment. I don't want to see Registrars any more.

I should add that we aren't using Atropt drops anymore either. It will be interesting to see what colour his eye goes. I haven't properly seen his iris for months because the drops kept the pupil so big. Speaking of the pupil, it still looks like the number 8, like two pupils.

Off to our appointment today

We have another appointment at the hospital today, the one I made to check out what the white mass is in his eye. His eye looked amazing yesterday, it looked bigger and the iris was green like his other eye. Usually the iris is dark brown or black. It was as if there was nothing wrong.

So far,,,

I know there are a few new people reading the blog so to save you going back and reading all the posts looking for Joel's history, this is what's happened.

Diagnosed at 4 weeks.
Lensectomy (removal of the lens of the eye) and vitrectomy (removal of some of the white of the eye) at 2 months and 5 days old.

We patched and put a RGP contact lens in his eye for 3 months.

At almost 5 months old the surgeon found scar tissue in his eye (caused by the first op). Another operation to remove that scarring at 5 months old.

2 weeks later, his eye was full of blood (complication from the second surgery). Another operation at 5 months 2 weeks old to drain that blood.

2 weeks after third surgery we were told he has blood at the back of his eye now (most likely caused by the third operation). During the second operation, part of his iris was pulled off, causing quite a large bleed. There is no way to drain that blood, which is stopping any light from getting to the back of his eye, so he can't see.

Last week I noticed the scar tissue has come back in his eye. The surgeon will not operate on him anymore as it will affect his good eye. We have an appointment in a week to discuss what happens next.

I have been asked if we regret having surgery. Yes and no. Yes because it has had no effect on his eye, except to make it worse by giving him another problem to deal with (scar tissue and blood behind the eye) and no because his cataract looked quite bad before and at least that's gone. We did what we thought was best at the time. He did have some vision in that eye for 3 months so if it wasn't for the blood in his eye caused by the second surgery, he would still have that vision. But then, he may have lost that because of the scar tissue coming back a second time.

It may sound all doom and gloom but it never is, not with God. This scripture is one that Rich found and I'm believing it's true for my baby boy.

John 9:1

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of Him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."

White lines are changing

The lines now look more like a piece of spiders web. Like a little clump of it on the edge if his iris. I am fairly certain it's more scar tissue. Given he's not having any more operations, I guess it's just something that is going to have to stay there. It looks to be about 3mm long and about 3mm wide. My guess is the two lines have meshed together to form this mass. Now I wonder if it will just continue to form and grow across his whole eye.

Next appointment

I've got antoher appointment with Dr Lam next Thursday, 9th September. I can see the white lines in his eye, to me they are getting more noticeable. Rich can't see them, neither can my mum but I can. I know they're there I just want to know what they are. I also know there's no more operations for him so if it is something bad, we will just have to deal with it as best we can. If it's just a funny little thing going on with his eye then great. My feeling is that it's not something that's just going to go away. It looks like whatever it is, it's there to stay.

I was thinking that maybe it was something to do with where they pulled part of the iris away. It is hard to tell if it's on the cornea or not. Just wait and see. Again.

I've noticed something in his eye

On the left side of his iris, there are little white lines that go into the pupil. I have no idea what this could be. I don't know if I'd be able to see scar tissue if it has come back, if that's what it is. His last lot of Atropt drops were Thursday, he's due for another lot tomorrow. They are keeping his pupil large to try to prevent the scarring from coming back.

The lines look like they are part of the iris. It's really hard to explain and really hard to see. I can only see if when I look at his eye from the top, like if he's on my hip and I look down and him, then I can see them. It looks like there's 2 lines.

I am worried about it. Of course I would be, I'm his mum. I just don't want anything else to be wrong with the eye. We're not supposed to go back to PMH for another 3 weeks or so but I am going to ring tomorrow and see if I can get in on Thursday. Starting to wish I just took that private appointment for 7th September when I had the chance.

He's been really unsettled too, rubbing his eye a lot. I've been up at 4am with him most mornings after waking up 3 times during the night. See this is the thing, it could be just teeth that is keeping him up, it could be a sore tummy from the food because he's just started on solids. It's so hard not to think that it's his eye every time he cries. That it's hurting him or the pressure is too high or whatever.

He has started really crawling now too, he started commando crawling and within a week is really trucking along. He's very quick. It has made it more apparent though that he can't see out of that left eye, he has cut his cheek, hit the left side of his face on the corner of the tv unit and smashed his mouth on the side of the table making it bleed. All on the left side.

In the meantime, I'll just keep up the prayer and just know that this is God's will.

Haven't put the lens in, had healing prayer

I haven't put his lens back in. I tried to do it but man, he has gotten sooo much stronger since I did it before! It was so hard on my own, he just got really angry and frustrated so I stopped. I spoke to Rich about it and he said to just leave it, don't put it in so I haven't. I see the lens every time I open the cupboard though.

His eye looks like it's getting worse, like getting darker in colour. There's no light getting to it but in Jesus name, there will be. Our church held a healing service this morning so Rich took the day off work and we went and got some awesome prayer for Joel. I really believe that God is healing Joel as we speak, there are things going on behind his eye that we can't see. God is clearing and draining that blood that's stopping the light form getting in, I just know it.

I still feel sad when I look at other kids, even adult men, with their perfect eyes and think "Joel will never look like that" but it's getting easier to handle it.

There was a guy on tv yesterday who has this bionic eye, he can't see out of it but it's got a camera in it and it lights up red like the Terminator. Great sense of humour too, I've been meaning to google it to find out more about him.

I think I might start with the contact lens again

So I have been thinking about it and I think I might start putting his lens back in. It's been a month since his third surgery, his eye has healed and we are down to 3 times a day Predefrin Forte drops. He is slowly being weaned off those, next week we use them twice a day then the week after, just once a day. Two weeks after that we go back to PMH. It just seems like a long time to wait to see if we can use the lens again, this time is so critical for his vision, if any, to develop. We are continuing to use the Atropt twice a week to keep his pupil dilated to try to p;revent scar tissue from forming again.

I will speak to Rich about it, I know he will just tell me to do what I think is right. I'll pray on it and see what we can come up with.

Some times of the day his eye looks great, other times it is so dark and turns out or in. His pupil is still a really big teardrop shape. I am still believing he will see and praising God for the amazing little boy he is.

Check up after third op - 18 days post op

Joel's pressure has dropped from 30 to 15. This is just awesome. I haven't been using the drops that Andrea gave me either. I got to see Dr Lam yesterday as Andrea has left PMH. They have replaced her with a guy about my age, who is, shall I say, very good looking haha. Dr Lam was GREAT. He is sucha brilliant doctor, I can't fault him at all. He said the pressure had gone down and I said that was a miracle because I wasn't using the drops and he said "keep praying". He told me never to give up hope that Joel will see out of that eye. He also said that if worst comes to worst, he wouldn't have a plastic conformer, he would give Joel a soft contact lens with a painted eye on it that was bigger than his PHPV iris so as to be the same size as the good eye. We don't have to go back to PMH for another month.

I am back to feeling so relieved, like I was after the first surgery was done. We are back to normal around here - the only thing is the drops we still use to keep the inflammation and infection away after the surgery. Apart form that, we've got another month before we even have to think about worrying.

In other Joel news, he has 5 teeth and a LOAD of snot. Poor little bugger has a cold, so he's been really clingy but oh my gosh do I love his cuddles. He also has said his first word - "hello". Clear as day. Gotta love him.

Off to church tonight and there will be a praise report going in for sure. Glaucoma has nothing on my God. My God is so much bigger than this and His plan for Joel is awesome.

Another check up

We are off to PMH again today. Before that I am taking Annalise to the park for a picnic.

Really praying for good news (or at least no bad news). Joel has been super unsettled lately, he has a cold, had his 6 month needles and cut two more teeth all in the space of 3 days. He hardly slept yesterday but he did sleep from 8pm - 4am last night so that's good. He was in sucha good routine before the second operation, we've gone so backwards with everything. He is all over the place. I really hope I can get him back into some sort of routine fairly soon.

His eye looks the same, not much difference there.

More good news

I think I forgot to mention before that Joel doesn't have the blood disorder they were testing him for. He does bleed alot but apparently that's just him!

Comments

Just wanted to say that I do read all the comments people post on the blog and really appreciate the support and encouragement, even though I may not always reply. It's amazing to me that so mnay people are reading it now, lots of people I don't even know and I really hope that it is helping someone through whatever journey they're going throug to know they're not alone.

First normal day in ages!

Well today we have nothing to do, nowhere to be. It's the first day in ages when I haven't needed to be at PMH or finding a babysitter for Annalise or anxious about Joel's next appointment. Life just feels normal.

I am taking the kids out for breakfast (well Annalise anyway, with all the surgeries, Joel hasn't really had a chance to try "real" food! He had a spoonful of mashed, warmed banana last night but that's it. I'm not worried about his solids, we do BLW anyway so it's worked out well). After brekkie, we are going to the craft shop to buy more supplies to make a rocket ship and some bracelets. Church tonight then Mundaring Truffle Festival tomorrow. This is how life was before we'd even heard of PHPV, just cruising along with no interruptions but you know what? All this stuff we're going through has to be of some benefit to someone! Surely I am helping someone with my experiences, or if not now then later down the track. Everything my little family has been through in the last 3 years just makes my life story that little bit more colourful and I wouldn't change it for the world.

Another check up and GOOD NEWS at last!

So yesterday we went and had some prayer from two amazing women. They prayed over Joel and annointed him with oil. The prayed for Annalise and for Rich and for me. At one point in the hour or so we prayed, I felt God's peace, tears were streaming down my face and He gave me a scripture which I looked up when I got home. Romans 8:12.

"So then, brethren, we are under obligation, not to the flesh to live according to the flesh -- for if you are living according to the flesh you must die; but if by the Spirit you are putting to death the deeds of the flesh, you will live. For all who are being led by the Spirit of God, these are sons of God. For you have not received a spirit of slavery leading to fear again, but you have received a spirit of adoption as sons by which we cry out, 'Abba! Father!' The Spirit Himself bears witness with our spirit that we are children of God, and if children, heirs also, heirs of God and fellow heirs with Christ, if indeed we suffer with Him that we may indeed be glorified with Him."

I wasn't given a spirit of fear, I am God's child, Joel is his child and we are going through this to bring glory to His name. Amen to that!

So today we had another check up at the hospital and his eye looks great - PLUS - the pressure has dropped. On Monday they gave me some drops to use because his pressure was high. I researched them a bit further because something in me just didn't feel right about them. After reading about them and praying on it, I decided against using them. I know someone is going to think that's irresponsible but I just really felt that he didn't need them right now. So on Monday his pressure was 30, today it was 24. Praise God.

I am now declaring every day that he is healed, that he can see and that he will be a mighty man of God.

The power of prayer is an amazing thing.

Prayer today

Joel and I are going to get some prayer today.

One thing I've been thinking about is that when I am talking to other mums and dads who have kids with PHPV, a lot of them have a strong belief in God and Jesus. I am not saying PHPV seeks out and targets Christian families, is it just that when these things happen to our kids we turn to God? Even if we weren't believers before, would we have turned to Him? When there's nothing left of your own strength, when you can do nothing more and give nothing more of yourself, do parents start to question the existence of someone bigger? Someone who can do something, who can heal our babies? If parents didn't believe before, is an event like having a baby with a birth defect the catalyst to seek Him? These things may be something that was meant to bring pain and suffering and hurt to families, and they certainly do have the capability to do that. There is nothing more painful than seeing your baby in pain. There is no feeling more helpless than not being able to take away your own child's suffering. But is God using these events to bring us closer to Him? To bring people TO Him. There is alot of belief in God when talking about the victories with PHPV but the hurdle for me is to praise Him when we're not having a victory. To thank Him for the amazing little boy He has given me and for the purpose and plan He has for his life when we are at rock bottom with Joel. That's the tough one. That's faith.

This song is my life right now

http://www.youtube.com/watch?v=fncy4_uUS_E

I’m running back to your promises one more time,
Lord that’s all I can hold on to,
I gotta say this has taken me by surprise,
but nothing surprises you.
Before a heartache can ever touch my life,
it has to go through Your hands,
and even though I keep asking why,
I keep asking why.

No matter what,
I’m gonna love You,
no matter what
I’m gonna need You,
I know You can find a way to keep me from the pain
but if not,
I’ll trust you,
no matter what,
no matter what.

When I’m stuck and there’s nothing else by myself,
I’m just sitting in silence,
there’s no way I can make it without Your help,
I won’t even try it.
I know You have Your reasons for everything,
so I will keep believing,
whatever I might be feeling,
God you are my hope,
and you will be my strength,

No matter what,
I’m gonna love You,
no matter what I’m gonna need You,
I know You can find a way to keep me from the pain
but if not,
I’ll trust you,
no matter what,
no matter what.

Anything I don’t have
You can give it to me,
but it’s OK if You don’t,
I’m not here for those things,
the touch of Your love is enough on its own,
no matter what I still love You
and I’m gonna need You

No matter what
I’m gonna love you,
no matter what I’m gonna need you,
I know You can find a way to keep me from the pain
but if not,
I’ll trust You,
no matter what,
no matter what.
I know You can find a way to keep me from the pain,
but if not,
I’ll trust you,
no matter what no matter what no matter no matter what

Update

Well, even though the hospital rang to cancel my appointment, I turned up anyway. I waited until I could see Dr Lam and finally got some reassurance.

The pressure in Joel's eye is 30. Anything less than 20 is considered normal. He has no blood at the front of his eye but there is blood at the back which is preventing him from seeing. We are praying it goes away as they won't operate on it. He essentially has glaucoma as well. It really has gotten to the worst point it can without them having to remove his eye. Although, having said that, with PHPV it really is a case of "expect the unexpected". These eyes don't behave how a normal eye would, so given the exact same surgery, circumstance and treatment as a non PHPV eye, the end result can and will be completely different and unexpected.

I'll go back to the beginning for a minute:


Joel's first operation - lensectomy and vitrectomy - was when he was 8 weeks and 5 days old. He had a second op to remove scarring that formed as a result of the first operation when he was 5 and a half months old. After that op, his eye - the anterior chamber - filled with blood so he had a third op the week after the second to drain that. So far it looks good at the front of his eye but now the back of it has blood in it and they're not going to do a fourth op to remove that blood.


Joel's eye is turning outwards a lot, he hasn't had a contact lens in for about 6 weeks, so no patching or anything. His eye also looks a lot smaller than his good eye now, I think that's because he's getting so much bigger and the difference is more noticeable.

He also has high pressure in his eye so we are using another lot of drops. We use one lot 5 times a day, another 4 times a day, another once a day and another twice a week.

One specialist we see has pretty much given up on the hope of Joel getting any sort of vision from that eye. The other doctor says to just wait a month or so and see what is happening with the blood at the back. If it goes away we will start the lens again, if not, I don't really know what the next step is.

I asked about a conformer or something to help his eye socket grow but that's not something they are looking at doing now. That worries me that he is missing out on having that opportunity to help his face to grow.

We have another appointment for Thursday.

We declare

Just downloaded We Declare by Equippers Church to my Iphone. Loving it. They were the guests at our church this morning, amazing amazing worshippers. So changed by having them at our church, so blessed and incredibly grateful to have been able to experience them. So in love with Jesus and I just know that He is protecting Joel.

New song in my spirit

The enemy is defeated, as I praise, praise You. You are mighty, yes You are. You are mighty, yes You are.

Thank God

Thank God for church, for positioning me in such an awesome place.

Friday night church was amazing, so much worship and so many tears from me. This is Our God just gets me every time! I went this morning for the 9am service, stayed for that then stayed on for the next 11am service just soaking up God's presence and worshipping Him. I've realised how much I've been relying on my own strength to get me through and taking the word of the doctors about Joel. I've felt so abandoned by God, just thinking that He hasn't been with me lately and that's just wrong. He has been there, I just haven't been turning to Him, asking Him to help me and trusting Him. That was the revelation I got out of this weekend - that I haven't been trusting God with all of this. God allowed Joel to be born like this and He has an amazing purpose for Joel, he is going to bring so much joy and so much humility to so many people. He's already a mighty little man of God.

The enemy is defeated as I praise, praise You. That's what I've got in my spirit today. The more praise I give Him in all of this, the more the enemy can't get in there. God is in control of all of it, not my feelings, not what the doctors are saying.

I feel like a weight has been lifted off my shoulders. I feel lighter and more at peace with everything than I have in months.

Praise God for my perfect little boy. Praise God for giving him to me to look after and for giving me everything I need to be able to get through this.

I'm going to steal something from another mum, an amazing woman of God:

PHPV doesn't stand for Persistent Hyperplastic Primary Vitreous. It stands for

Praise His Perfect Victory.

Amen! Now I am going to crank some Hillsong up really loud and praise and praise and praise!

Got a phone call

From the hospital, they have cancelled the clinic for Monday.

I have to wait til Thursday. I don't know what else to do, who else to call. I might try the Optometrist who gave Joel his contact lens, that's the only person I can think of.

I am taking A and J to the park to feed the birds today. Annalise is so excited. She said "With mummy? Mummy's not taking Joel to the hospital?" She's so used to me leaving her places now. I told her that I was staying with her all day and she went and put her new sneakers on with her pajamas and said "let's go!" It was 7:10am, a bit early for me.

Joel woke up again at 3am and was up until 5. I tried to put him in his own room but he just cries, he wants to be in the bed with us. I don't know if the crying is because his eye hurts from laying down for so long (7pm until 3am) or if it's teething. Another thing I don't know! And to think I was expecting the second time around to be easier. Two kids IS easy. Without Joel's issue with his eye, I can honestly say there would be very few moments where I would be overwhelmed. I know that if it wasn't for the problems we are having with his eye, we would be planning a third baby for sometime next year. As it is though, I am done at two.

"It could be worse"

How many times has someone said that to me.

Yes, I know it could be worse. But it's not. This is MY worse.


"At least he can see out of his other eye"

Yes, I am quite aware of that too, thank you.

It's not about "it could be worse" or "at least he's got one good eye". It's about everything else that goes along with it. It's about not seeing my daughter for 2 weeks because I am at the hospital with Joel all day and trying to calm him down at night and I have no time for her. It's about something happening to his good eye, what then? It's about seeing my baby in pain. It's about not knowing what's coming next. It's about having to deal with people looking at him and wanting to ask what's wrong, but not in case they offend me. It's about him getting teased at school, not being able to play sports, having to wear big goggles to protect his eye. It's about him not being able to get a drivers license. It's about all of that and heaps more. It's about you have no idea what it's like until you're going through it and I wouldn't wish this on anyone.

I started this blog to help other mums and dads and educate other people and I am trying to keep it real. I am being honest, yes it does feel absolutely devastating at times and really great at times. I don't want people to feel sorry for me or for Joel, it's just about support and encouragement.

Made some phone calls

I called the hospital back today and spoke to Wilma, the receptionist at the Opthamology desk. She has booked me in for 10:15 on Monday but she said she doesn't know if Dr Lam will be in but that if I don't see him I should "jump up and down" until I do. She said to just come in and wait for him so I will.

Rich has gone out tonight, kids are both in bed. I haven't made any food again, I was going to but it didn't happen.

We have a healing day at our church soon. Rich has written up on the board "Joel will see" and the date of the healing morning. I have so many questions for God.

I feel like my prayers for Joel have become more of a begging, I want to stand strong in that Joel will be healed, that he will be able to see but I end up crying and just begging Jesus, heal him. Part of me wants to just go and sit in the corner and cry, take myself away from everyone but I know that I need everybody in my life right now. I need God in my life right now, probably more than I have in the 2 years since I started going to church. Someone said that when we were first told Joel had PHPV that we would go through a grieving process for the loss of the "perfect" child, but do you know what the grieving process I am in is really like? It's like being told someone has died, then 2 weeks later - oh no, they are actually alive, then 2 weeks later, oh sorry, no they're dead, 2 weeks later, hang on, they're alive...We get told he won't see, he will see, he can't see, he might see...Well, what is it? What am I supposed to believe?

Check up

We've just come from the hospital and didn't get to see Dr Lam again, we just saw Andrea. I just can't stop crying AGAIN. Why can't we just see Dr Lam? He did the surgery, we always end up seeing Andrea or Josh and never Dr Lam. Isn't my little boy important enough? We've got private insurance, we can afford to pay to see him, why can't we see him? Andrea told me that there's blood at the back of Joel's eye now, there's hardly any red reflex, he'll never be able to see, they'll either remove his eye or put the shell over the top. They're not going to operate to remove the blood at the back. I just called Dr Lam's private rooms to get in to see him and the earliest I can get in is September 7th. I feel so unbelievable helpless. I just want someone who knows what they are doing, what they are talking about. I feel like no one there cares about my baby. I am sick of crying over this, I am sick of feeling frustrated. She couldn't get the pressure on the first go so she just left it. There is this whole air of "why bother about Joel" when we are there. It's like they've given up on him.

My baby.

I feel so useless and hopeless and alone. I just want to be able to help him, to get him the best care and I can't. I keep crying and that's not doing anything.

We are going back next Thursday, well that's what Andrea said. I am going to ring and change it. I wish I was more assertive when I was there. I wish I would have just sat there and waited until Dr Lam got there. We've been there 3 times a week for the past 3 weeks. We only see Dr Lam if Andrea thinks there's a reason to, and yes I KNOW HE IS BUSY but FFS. Seriously.

I would give absolutely anything, anything, for my baby to see. For his eye to grow and heal and there is just absolutely nothing I can do. All I can do is put these friggin drops in every hour and just hope for the best. It's just not enough. I want him healed now, I don't want him to keep going through this. His eye hurts him, he can't see out of it, he's had THREE OPERATIONS AND HE IS SIX MONTHS OLD.

I am getting closer and closer to breaking point, I can feel it. I am so angry, sad, frustrated, disappointed, guilty, tired. Crying as I'm typing again. Why did we even touch his eye in the first place. Why didn't we just leave it. We've made it worse, we should have just left it. I don't know why I thought we would be different. I don't know why I thought Joel would get good vision with a contact lens. He's got nothing except blood behind his eye and we did that by putting him through 3 operations. He can't see out of it, it' looks horrible, it's been butchered. I read other people's stories about PHPV and their kids operations and none of them ended this way. They all got some sort of vision from it. Why is Joel so unlucky. Why is he so different that he got nothing from all of this?

This is breaking my heart. I want my heart broken for things like my baby putting himself to sleep and not needing me anymore, for him weaning off the breast, for his first day of school, for him riding a big boy's bike. My baby just doesn't get to be a baby, he's always getting poked and prodded and touched by all these different docotrs and nurses and having his head held and arms pinned to put in drops or a gas mask on his face or a lens in his eye or a patch on. Can't believe how sad I am. I just can't help him.

What his eye looks like

I'll try to describe what his eye looks like, just for any mums or dads who may have little bubs having eye surgery.

The vitreous (white part) is very blood shot and looks inflamed. The iris (coloured part) is darker than his normal eye and the pupil is a large oblong shape, like an oval but not perfectly round. It has dents and bumps in it. It doesn't sit in the middle of the iris, it falls more towards the bottom of the iris, giving him a sort of sad look in his eye, like you see in cartoon drawings. Obviously the eye is micro so it is probably 5mm smaller than his good eye. The small red veins on the lid of his eye fuse together in one spot. I have no idea why this is, I asked the surgeon ages ago and he just said it's because that eye isn't normal anyway, it's just another funny little thing with it. The bottom lid is swollen, I can only assume that's from being held open with the gadget during the surgery.

We're not playing particular games with Joel that put pressure on the eye, like lifting him over our heads with his head pointing down, nothing that makes him go upside down and I have no idea how we wil do this, but he's not supposed to cry too much because that increases the pressure. He's not a real crying baby a lot of the time, really only when he's in pain. I have noticed that when he's on his tummy his eye goes very red, so I've been sitting him up in the high chair to avoid that. He's at that age where if you put him on his back he'll just roll over to see what he's missing out on. Last night he had some tummy time and afterwards he vomited which he's never done before. They can vomit if the pressure in the eye gets too much so I am guessing that's what it was.

Other than that, he is such a good little boy. I really feel honoured that God chose me to be his mummy. There are definitely moments when I don't think I can handle the pain of seeing him in pain. I look at him and get sad but then I know I am going to wake up the next morning and see his smiling face on the pillow next to me and I am so blessed that I get that. I get to cuddle him whenever I want, I got to bring him home from the hospital, he's not sick, he's perfect.

Third surgery, 3 days post op.

He was up before 6 crying, I think his eye is bothering him. Yesterday is was so red, the vitreous was bloody and it had swollen shut again. I really tried to keep on top of the drops yesterday too, waking him every hour to put them in. He is so sick of having the drops in his eye, he has developed some really clever ways to get around it. They are so smart.

We are off to the hospital again today, hopefully to get the results back from the blood test.

I've seen photos of another little boy with PHPV who hasn't had surgery. He has been given a painted shell and it looks amazing. It is very hard to tell that his eye is micropthalmic. All this stress of surgeries and that's probably where we will end up anyway. A big part of me is relieved that's where we will end up. The painted eye looks exactly like a normal eye, especially in photos and although we have only had a few months of putting in and taking out the lens, I feel we could make the transition to the conformer if/when it comes to that. Maybe I'm being naive, I don't know. Maybe I'm feeling a bit defeated about it all. I know God has it under control, I just wish I could see even a few years down the track to know what is the right decision to make now. I am going to talk to Dr Lam about it today. At the moment, all we are really doing is trying to save the eye from being removed, I feel like we have all pretty much given up on any hope of him getting any useable vision from that eye, so maybe the conformer/painted shell is the way to go.

Post Op check up

Went well. Andrea said she was happy that it hadn't bled again, got to agree on that one. She tried to get a good red reflex but couldn't because he kept moving around, she didn't test the pressure either but that's not really a concern right now. We go back on Thursday at 1:30.

We are on hourly drops of Prednefrin, 4 hourly Clorsig and twice weekly Atrope. The Atrope will dilate the pupil, the theory behind that being that the plaque builds up when the pupil is small, so by keeping it big we can avoid that. It just means that he will be super light sensitive for a while. The drops actually make his eye look more normal. The pupil in his PHPV eye is tiny, with the dilating drops it goes to the same size as his good eye.

The gel they have put in his eye is the gel they use during normal eye surgeries to safeguard the tissue in the eye. I forgot to ask exactly what it was but from my googling, I assume it is something like a viscoelastic solution (just for any parents wanting to get technical!) Normally that gel is removed before they finish the surgery, in Joel's case they have left it in there.

The results weren't back for the blood test they had done for the blood disorder. Hopefully they'll be there when we go in again in Thursday.

Pic to the right of how my little man looks today, poor little bugger. He's only had one lot of Nurofen this morning and seems really happy, albeit exhausted.

Day after third surgery

And he is doing well. He seems happy enough, just a bit irritable. We are going back to the hospital for a check up as soon as he has his morning sleep. We had a pretty average night, I have this unbelievably annoying cough and every time I coughed, he would wake up. So frustrating. He wouldn't sleep in his cot by himself, just upright on me so we didn't get much sleep.

The operation took a lot longer than I expected. He went in at 3:45, I saw him get anethetised again. That never gets easier. I was trying to tell him "you're mummy's best boy, just a quick one this time" but I've lost my voice so it was just these stupid croaky sounds and I was so angry because I couldn't talk to him properly. I know it sounds unreasonable, but it really pissed me off. The surgery itself was supposed to take 20 minutes. I thought he'd be out in recovery by about 4:45 at the latest. At 5:15 I was getting really worried and asked the nurse to find out what was happening. She told me he wasn't in recovery yet, still in the operating room. Finally just before 6 they said he was out. I went in to recovery and he was screaming again, bright pink all over and the nurse was trying to cradle him but he was squirming and crying. She gave him to me and this time I was glad they had taken out all the drips except the fluid one in his arm before I got there. He didn't have as many puncture marks all over him this time, it looks like they got it into his left wrist on the second attempt, they had also tried his right.

He was screaming so much he wouldn't feed so I was just cuddling him while he cried. He calmed down after about 5 minutes and had a big feed then fell asleep so we walked back to the ward with the trolley because his drip was still attached. I am worried about my milk suply because his feeds have been so up and down the last 2 weeks. If I can't keep breastfeeding him I'll be so disappointed. It is a really important part of their baby-hood for me.

The surgeon said that when they went to drain the blood it just kept bleeding. They have filled his eye with jelly to try to stop it from bleeding. They think he has a blood disorder called Von Willebrand Disease (http://en.wikipedia.org/wiki/Von_Willebrand_disease). It seems fairly common and harmless enough, excpet when you're a tiny baby and you're having surgery on your eye. It basically affects the bloods ability to clot, so he just keeps bleeding. They are testing him for that this week.


I feel like I'm in the ocean, trying to swim out to a point in the distance but each time I get anywhere, a huge wave comes and tries to drown me and pushes me back where I was. I can see the calmer water on the horizon but I wonder if I'll ever get there. I just don't know if I can handle any more bad news about him.

I've put up some pictures of him from yesterday. I'll update once we've seen the specialist again and know if yesterday was a success or not.

Surgery day (again) - for parents

I was just thinking, when Joel had his first surgery, I didn't really know what to expect so here's some "tips" that might help you if your baby is having an op.

Take someone with you, especially if it's the first operation. The doctors will tell you so much information at the end of the op, but you will be more concerned with when you get to see your baby you won't take it in. Someone else might remember more.

If you're breastfeeding, take a pump and express.

Take change for parking and money for food. Hospital food is expensive so take more than you think you'll need.

With fasting, try to get to the hospital an hour before you are due to be there. You can feed baby in that hour then do all the paperwork. If the operation is at 3, baby will need to fast (breastmilk) from 12, so try to get there at 11.

Take snacks because if you're hungry during the operation and you don't want to leave to go to the cafe "just in case" you'll regret it in the hours after when you're stuck in recovery.

Take something to do during the operation - download apps to your iphone, take a book, or just ring people on the phone while the operation is happening.

Allow at least 3 hours after the operation before you'll get to leave the hospital.

Have someone make you a meal for that night, especially if you've got other kids. If you can arrange it, meals for at least a week after are a HUGE help especially if bubs takes a while to recover.

Wash bubs hair on the day of the surgery coz you won't be able to wash it for about 3 days after in case soap gets in the eye.

That's all I can really think of right now and I know every hospital is different so I'm not claiming to be an expert or anything. The only other advice - try to stay positive and calm on the day.

Comparison pics

I've put up 2 pics - one at 8 days post op showing the blood covering the whole eye and another one from 10 days post op. Quite remarkable.

Zooming in

I bought a new camera the other day, I had to because I left our old one outside in the storm. Ooops. Anyway, the new camera has a really great lens and I can zoom right in so I took a photo of Joel's eye yesterday then zoomed in again when it was uploaded to the laptop. It's pretty amazing, I can see the hyphema in his eye, it looks like a dark mass over the iris but I can see part of the iris so it doesn't cover the whole eye anymore. Maybe when they go in on Monday there'll be a lot less blood to drain than they thought.

New pic of him is up, taken yesterday. Love my boy.

Next operation on Monday

So we're back from the hospital and booked in for another operation on Monday at 3.

I feel ok about it. I knew it was coming. The blood in his eye was black on Monday and Tuesday, yesterday it went red so he had a re-bleed. This was most likely caused by the TPA (http://en.wikipedia.org/wiki/Tissue_plasminogen_activator) which is a protein they put into his eye to stop the scar tissue coming back but the unfortuante side effect is that it also stops the blood from clotting, so his eye has just kept bleeding. He has what is called anterior chamber hyphema (http://en.wikipedia.org/wiki/Hyphema). Unlike the picture on wikipedia, his whole eye ball is covered in blood. I just want this op over and done with. I just want my normal life back, even if it does involve patching and contact lenses. His eye hasn't been seeing properly for weeks, all the good work with the patching just seems like it wasn't worth it, even though I know it was the right thing at the time. Far out. My poor little man, he can't catch a break.

His eye pressure was 7 today, which is good. On Monday it was 19. Anything less than 20 is normal, so he just scraped in before so I am really glad it's gone down. He's happy today, smiling and chatting up the nurses. He made a little friend at PMH today, a boy called Ryan who is about 7. Ryan kept saying how cute he was with his 3 teeth. He's cut the two bottom ones and a top right inscisor, it's so cute because he grinds his teeth but because they're not directly above and below each other he has to move his jaw all the way over, it's the cutest thing. I wonder when the two top ones will come through. It'd be good if they came through when he was under his GA on Monday haha. Save him the hassle of teething.

So, it will be another few days without Annalise at home with me. I hope he recovers quicker this time. It's a fairly straight forward procedure, they make a hole in the eye and flush the blood out. There's not much they can do to stop it bleeding again, so all we can do is keep praying the bleeding stops, his pressure stays low, his retina stays attached and he recovers quickly.

9 days post op - pics added

Not much to say today.

Feeling a bit sad about tomorrow, just really hoping it goes well.

I've been to mums this morning, she said we can never stop praying for Joel and that she prays every day. I wish I had her faith, sometimes it alludes me. Sometimes I pray so much that I get goosebumps and other times I feel like what is the point. If God gave me Joel to test my faith, He is achieving His goal.

I just feel really down about it all today. I took heaps of photos of him yesterday and looking at them tody just makes me so sad. They only look good in black and white, that way you can't see how bad his eye looks. I feel like I've become that mum who other mums think of and are glad it's not happening to them. I honestly never thought it would happen to me.

Til tomorrow.

Other sites for support

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

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

http://www.facebook.com/?ref=logo#!/group.php?gid=58073768937&ref=ts


..

8 days after surgery

He seems completely back to normal except for this unsettled-ness. Now I am worrying myself that he has glaucoma. He still doesn't really like being on his back but only for the night sleep and I don't know if that's because he is in pain or he's used to sleeping upright on me because we've been doing that for days.

It feels like this PHPV thing is a rollercoaster. I go along thinking everything is great, then we have an appointment and he needs surgery. He has that, I go along thinking he's going to be able to see, we have an appointment and it's more bad news. It's up and down and up and down.

I feel like I shouldn't HAVE TO put drops in his eyes every hour. Why can't I just have a normal little family who just goes along having their problems but not stopping every hour to put drops in his eyes? I'll just get started on something then it's like "oh have to stop now to put drops in". Put the drops in and start it again then it's time to put him to bed, but before we do - more drops. Every time he wakes up at night I am putting these damn drops in. He is sick of it and so am I. I really hope he hasn't got glaucoma, that is managed by drops in his eyes all day. I know I will handle it if that's the case I just don't want another set of bloody drops.

In certain light his eye looks black, in others it's red. Most of the time I can't see the pupil. He has it closed a lot too and when it's open it's usually drifting off to the left while the right eye looks straight ahead. I just want it to clear so it doesn't look so "dead". What if it never goes back to how it was? I look at photos of him 2 weeks ago and he had two beautiful eyes, even though one couldn't see. What if it never goes back like that? I couldn't live with myself knowing I agreed to the surgery and it did that to his eye.

7 days post op check up

It went as well as we could hope for. He didn't have to have another operation today although there is still a lot of blood in his eye so we have to go back on Thursday and get that checked out again. Andrea couldn't get a pressure of his eye, she mucked around so much with the guage and Joel just got so angry (so did I). She's worried about glaucoma because he has been so unsettled and a bit miserable still. At night he is worse, but he is also getting teeth so it's hard to tell what bothers him. The pressure in his eye or the teeth. Hopefully Dr Lam can see him on Thursday and do the pressure test properly. If he has high pressure they'll operate on Friday. More waiting.

Rich finally offered to help me around the house this afternoon, I think he realised how hard last week was for me. I was trying to clean up the kitchen, Joel was crying and Annalise wanted something to eat and Rich asked if there was anything he could do. I just wanted him to hold Joel so he did and even that tiny bit made a difference. I really struggled last week. I had so many people helping - making meals, looking after Annalise, calling to make sure I was ok - and it was still hard. I missed Annalise so much, that was the worst part of it. I had no time for her or with her and it broke my heart. Last night when I put her to bed she asked me to lay down next to her until she fell asleep. Her love tank was running on empty. I stayed with her for ages then Joel woke up crying and I had to leave her. That's the hardest part. I don't want her to think that she comes a poor second to Joel, I want her to know she's my absolute number one angel and I love her so much but it's just SO hard spreading myself that thin for both of them and even thinner when Rich wants time with me. I felt like last week there wasn't enough of me to go around and emotionally I felt so drained. I cried every time someone asked how I was. I just don't know how to do it all.

6 days post op

His eye looks much better. He's happy and smiley and only cries when I put the drops in. Man, he hates those drops. He's been having 2 hourly drops for 2 weeks, then this past week they've been every hour. He's over it.

We went to church this morning and I put in a prayer request to pray for his eye to heal. So now, it's waiting again. Waiting to see what happens at 11am tomorrow.

5 days post op

And he's doing better. I think his eye still hurts, he cries out in pain in his sleep and when he first wakes up. I have posted a picture taken last night. It's not easy to see a babies eye ball filled with blood, especially when it's your own baby.

I have finally done some washing and cleaning around the house. The whole week has been a write off. I think I can put it down as the worst week of my life. One good thing is that I have my baby girl at home with me all day today, I have missed her so much.

How did Joel come to be?

The way I see it, it's a miracle Joel is even here.

18 months after Annalise was born, I left Rich. We were separated for 6 months, had lawyers, were going through the family court for custody of our little girl, not talking, only communicating through legal paperwork and none of that was friendly. It was a mess and I honestly thought we would never be a family again.

For my whole life, I was an Athiest. To me, this life was all we had. No purpose, no meaning, the only things that really mattered were money, fun, material possessions. Rich always had faith that there was a God, and I was happy for him to have that, just don't talk to me about it. I didn't want that in my house. All these bible bashers coming to my door trying to convert me. The church brainwashing people. Stealing money. Abusing kids. Not for me, thanks. All you kooks and fruit loops can have it.

In October 2008, I realised how wrong I was. That my whole life I had been living with my eyes closed and my heart hard. Rich and I were separated and I had flown to Sydney for a conference. There was an optional worship session on the Sunday morning which there was no way I was going to. I had Annalise with me and my mum, our stay at the hotel with an 18 month old had not been restful or easy and if I could sleep those 2 extra hours in the morning, I planned on it. But, 7am on Sunday morning, I was awake and feeling like I'd had 12 hours sleep. Something made me go to that worship session and while I was there, I felt the amazing power of God's love. I knew that I knew that I knew that I knew - I had been wrong for 32 years. God did exist and He LOVES me. I just knew it in my heart. I won't go into details of how I knew it, I just did.

Two weeks before, I had been at a park with Annalise and in her usual fashion, she had adopted another family. A mother and her little boy. We all got talking and she invited me to her church. Ah, she's one of those! I declined the offer, I was doing just fine at this solo parenting, sue your husband, take the house, child, money and never trust a man again business on my own. I didn't know then that God would get me to that church anyway!

When I got back from Sydney, I called this lady. I told her that "something" had happened to me and she was the only "religious" person I knew, can I come over for a please explain. She told me of God's love, that he is in the business of saving people and mayb enow I'd like to come to her church. I said I'd be there with bells on.

After about 6 weeks of going to this church, I really felt I needed to talk to Rich. Not through lawyers, but face to face. I called him and needless to say, he was very surprised to hear from me. What surprised him even more was my invitation to church. He was saying "YOU go to church? What the? I don't get it. Are you serious?" I just said "yes, come". He did. He was saved that night and our family's restoration began.

It's a long sorry of everything that happened next, of all the miracle's God did to restore us, so I will condense it. 2 months after Rich came to church, he moved back home, 2 months after that we were pregnant with Joel. My mum and brother come to church, Rich's mum, sister, her husband, his mum, his sister, her daughter all come. We've had friends saved, we've seen our family get baptised and we've seen my amazing mother in law be healed. She hobbled in on cruches, barely able to walk and in pain. She left jumping, skipping, kneeling and praising God. We know God heals.

I guess what that post was about was just to show me what God has done for us already. If it wasn't for Him, Rich and I wouldn't be together and we would have never had Joel. That is something to be grateful for.

A prayer

I received this prayer from an amazing lady. It brought tears to my eyes as it's just another example of the awesome power of prayer and the support we are getting from God's people. I have never met this lady so it touched me even more that she would be praying for us.

HEAVENLY FATHER;
YOU KNOW THE SITUATION THAT TRACIE IS FACING RIGHT NOW AND HOW MUCH SHE NEEDS YOU TO BE HER STRENGTH. PLEASE HEAR MY PRAYER FOR LITTLE JOEL AS YOU ONCE DID FOR MY BABY SO LONG AGO. HEAL HIS LITTLE EYE LORD HIS MOM FEELS SO HELPLESS RIGHT NOW AND WE CAN FEEL HIS PAIN IN OUR HEARTS. WE TAKE AUTHORITY OVER THIS SICKNESS RIGHT NOW IN THE NAME OF YOUR SON JESUS CHRIST AND INVOKE YOUR SPIRIT OF HEALING POWER. THANK YOU FATHER THAT YOU ALWAYS HEAR US WHEN WE PRAY TO YOU IN FAITH. WE LOVE YOU LORD. AMEN

Happy today

Joel seems to finally be happy again. He's smiling and laughing and farting like a trooper. My boy is back.

It's another day without Annalise today, she is going to visit her nanny. She slept in our bed last night and I missed out coz I was on the couch with Joel most of the night so he could be upright. I went in to our room when it started to rain really hard and just cuddled her. She let me cuddle her for ages. When the thunder came she said "Is it raining mummy?" and I told her "yeah, it is" and she just cuddled in more. I had Joel's head on my right shoulder and Annalise's head on my left and was thinking how lucky I am to have my two beautiful babies.

I'm still crying a fair bit, especially when I look at his eye. It's so bloodshot and red. He is really against having these drops put in, as soon as he sees the little white bottle he cries and turns his face into his shoulder. I know how important they are so I am holding him still to get them in. I do wonder what all this physical restraint is doing to his psyche. He has been held down to have lenses put in, to be anethetised, to get drips out and needles in, to be patched, now to have more drops in his eye...What are we doing to him. He's not even six months old yet and he's spent so much of every day being held down. That makes me sad.

New results

We're back from hospital.

They had another look in his eye and said he has a large blood clot. Andrea (another surgeon) had a look first then went to get Dr Lam, the senior surgeon. While she was gone I gave Joel a quick feed and when she came back and had another look, she said there is more blood than 10 minutes before. It is from him laying down to feed. This explains when he hasn't slept anywhere except on my shoulder since the op, he had one sleep in his bassinette this morning but woke up screaming. The pressure when he lays down causes a lot of pain in his eye. Andrea said that if I can, keep sleeping with him on my shoulder on the couch. I'll do that for my little man.

We have to go back to the hospital on Monday at 11. They want to give the blood a chance to drain and by keeping him upright as much as possible I can help to do that, so they'll give him the weekend to clear that blood. Come on God, just do this for him. Clear that clot so that he doesn't have to have another operation on Monday!!

I aksed Andrea "Really, what the point of all these operations? What's the reality of the situation, what chance does he have of ever seeing?" and she told me that he basically has no chance of ever getting any useable vision from that eye, that the surgeries are just to try to see what they can do but chances are really slim. She said the most likely outcome is that he will have a painted shell over his eye that looks just like his good eye because his PHPV eye will never look totally normal and even though the size difference isn't really noticable now, that in a few years time it will be and that the fact that the eye won't grow will cause him some pain because the rest of his face will be trying to grow and that cosmetically it will be "unacceptable". She said that if the eye continues to not respond to surgeries they may remove it.

I don't know, I know I should feel upset that they say he's never going to be able to see, that they might remove his eye. I feel like I should be falling in a heap but I just don't feel like that. I still believe there is healing there for him and that worse case, yeah he does have the eye removed and wears a false eye or a painted shell over his eye, well then that's just how it has to be. It's kind of a relief to know that there is a chance of him looking normal, even if he can't see.

Rich hasn't seen him without his surgical patch on (we had to leave the hard sheild on to stop him from rubbing his eye and the stitches) so today when I got home from hospital, he cried for him. He took one look at him and cried. I told my dad about the outcome from the surgeons and he cried, my mum cried, it's hard on everyone who loves and cares for Joel.

What I really do struggle with is the purpose in all of this. Why our family? Why my baby boy? We've seen, first hand, God's healing. I know that He heals so why has he chosen to ignore my prayers for my baby boy? I want to know His purpose. I want to know why we are missing out.

So for now, I'll keep praying for him, for this blood to clear so there's no more surgey and if you, readers, could do the same whether you believe or not, my little man would appreciate your prayers.

Photos

I've put some photos of Joel up on the blog, not for sympathy or to feel "poor me". I want other parents whose kids might have to go through this to see the reality of it. I wasn't prepared for how he would look or react after this surgery so if it helps another mum then that is great.

The quality of the photos isn't very good, sorry, although it does make his eye look a lot better than it does in real life!

Getting back on track

I think 2 days of feeling sorry for myself and my little boy is plenty, time to get myself sorted and get on with things.

He slept all day yesterday, from about 9 until 6. Annalise was with my mum. He woke up a few times in between having a bit of a cry but I could settle him fairly easily. We slept on me all day, if I put him in his cot he would wake up after 2 or 3 minutes and scream until I picked him up. So, needless to say, nothing got done and I didn't eat much. This is one of the reasons I am so grateful for the amazing girls in our church. They are doing our meals for us until Monday. It is such a blessing.

Rich went to the movies last night. I know he can't handle seeing Joel in pain, it is hard but it's not forever and it's to help him to see and try to give him as much chance as possible at vision. He left at 5:30, leaving me to put Annalise to bed on my own and deal with Joel. I understand it's hard for him but it's hard on all of us. Annalise wouldn't stay in bed so I got angry at her and she just laid on her bed and cried. She told me off for throwing her toy yesterday too. She said I was "mean". I was so upset, she was in there crying and Joel was crying and I was just standing in the lounge room with Joel on my shoulder praying to God to help me. Getting angry at God, feeling sad, over whelmed, angry at Rich, why Joel, why our family, poor Annalise, why can't he just be well, how am I going to do this for the next 10 years. So many things going through my head and only one man to give them to. Thank God for God. As it turns out, the tickets Rich had for the movie weren't valid and he was home beore 7 ;-)

So today, we are off to the hospital at 2. Annalise is with mum again, I miss her a lot. Joel has settled in his bassinette for the first time since Tuesday so I've had a shower and breakfast and I'm feeling better about things.

I just pray that today the bleeding has stopped and he doesn't have to have another operation tomorrow.

Last night

We went to Emergency at the hospital. Joel had 1 breastfeed all day, no wet nappies, kept waking up screaming and I couldn't put him down for even a minute. I haven't been able to get hardly any drops into his eye, it is so swollen shut and if I try to open it he just screams. My boobs are rock hard and leaking everywhere. He was weighed last night and has lost 150grams in 24 hours, but they weren't too concerned about that. I got home from the hospital at 1am, he was up at 3 til 4 then Annalise woke up at 5. I am so exhausted, my mum is coming this morning to watch Annalise. I just snapped at her for being too noisy and threw a toy. I feel like the worlds crappest mother right now. I haven't put drops in my baby boys eye and he NEEDS them, I yelled at my daughter and threw one of her toys. I am not doing well at all.

His recovery from the first surgery was so much better, I wasn't prepared for this.

Post Op check up

We have just got home from his check up and the news isn't good. His eyeball is bleeding, I knew there was too much blood to be normal. He may have to have more surgery later this week. Where the iris came away is bleeding. I made it all through the appointment and out to the car before I lost it and cried. I should have got someone to watch Annalise today. I have called Rich and he's coming home. I'm a bit upset. A bit? A lot. Really upset. Really really upset. Back to lots of crying then smiling when Annalise comes in. I was trying to make her lunch and every time I put Joel down he cries and she keeps saying "Mummy why is Joel crying?" and all I can tell her is that his eye is sore before I start crying. Poor Annalise, she shouldn't have to experience this, she's only 3.

The day after surgery

We (Joel and I) got to the hospital yesterday just after 11 and checked him in at admissions. We headed upstairs to the surgical day procedure unit and waited until just after 12 to be taken in. In that time I fed him as much as I could but he was so distracted by all the people walking around he wouldn't take much so I was just hoping it would be enough to see him through til at least 3. The anethetist came to get us and we went through all his paperwork. I told her about his cough and cold so she listened to his chest for a while, gave him a once over and said she was very confident there'd be no issue, she's been doing anesthetics for over 20 years and only ever had one unexpected reaction to a GA and that was an allergic one. She spent a really long time with me and Joel, just talking about what could happen, the risks, how likely it is for his cough to affect anything. I was very reassured by the end. She also checked with Dr Lam and he was very hesitant to put of the surgery because Joel's eye has already turned out quite a bit to the left and leaving it would just make that worse. So I signed the papers and it was all set to go.

The nurse came to get us and we weighed him (7.9kgs) and tried to get a length of him but he was so squirmy we got a very rough guess of 72cm. I needed to go to the toilet so I asked the receptionist if there was anyone who could look after him for a second and about 5 nurses suddenly appeared saying "I'll take him, he's sooooo cute!" So he was fine for a while! He kept laughing at them and smiling, I was getting really sad, I was just thinking the whole "why him" again, he's such a happy little boy, why can't he just be well.

At about 1:30, Rich rang to ask if I wanted him to come up to the hospital. I said yes because Joel was really tired and wouldn't sleep with me, he just kept trying to feed so Rich came and as soon as he took him, he fell asleep. He was so cute and chubby. He was wearing a little yellow surgical gown and I was reminded again how yellow is just so not his colour. He just curled up on Rich and stayed that way for about 10 minutes until the nurse came to put the dilation drops in his eyes. He wouldn't go to sleep after that so we just walked him around and showed him the pictures on the walls and told him he's such a big, strong, brave boy and he's going to be fine.

At about 2:15 he fell asleep again. At 2:20 they came to put the second lot of drops in his eyes. The poor little thing, He wasn't happy at all at being woken up a second time and just screamed. His right pupil was getting pretty big but I noticed the left one (PHPV eye) wasn't.

At 2:45 they came to check and said that they'd have to put more drops in the left one, it just wasn't dilating so they did that and he fell asleep again.

Surgery was booked for 3, so at 3:30 I was starting to wonder what was happening, Joel was starving by this stage (last feed was at 11:45) and Rich kept asking me "what's happening? what's happening?" As if I knew. I knew as much as he did. He said he was going to get coffee and as soon as he left, the nurse called out "Joel". I carried him through to the surgery room and the Anethetist came in and told me what to do, how to hold him while they put the little mask on his face. Last time I couldn't go in there, I think partly because he was so small and partly because I was an absolute mess at his first surgery. I sat him on my lap, facing away from me and held his arms while one nurse sat in front of him and another nurse sat by his side holding him. He struggled a bit when they put the mask on. The Anethetist was singing Twinkle Twinkle Little Star and I was saying "it's ok baby boy, mummy's here, it's ok, mummy loves you. You're my big strong man, you're mummy's good little boy". I was almost crying, almost. He went so floppy, I didn't know he would go that floppy and he felt so heavy it was so good the 2 other nurses were there because his arms and legs just flopped out to the sides and it was hard to lift him up onto the bed. Once he was on there they quickly shoo'd me out of the room and I sat down and waited. Rich left at 4 to go and get Annalise.

Just before 5 they called out "Joel's mum" and I could go in to see him. I could hear him before I saw him, this deep, sobbing cry then as we got closer it went into an hysterical cry and he was bright pink all over. He had blood stained tears running down his face, soaking up the gauze pad they'd put over his eye. There was SO MUCH BLOOD. Last time there was none, this time there it was just everywhere. It had run down his face and was on his arms and in his ear. The nurses were struggling to get the drip out of his arm, he was thrashing about then losing strength then trashing again. Finally one of them said "just leave it". I don't think they knew I was there. My poor little boy. I was saying "hi baby, hi baby boy, mummy's here little man" and he was trying to look at me with his one eye but he couldn't focus and he was just screaming out. I sat down with him and offered him the breast and he calmed down. He had a little feed then started to cry again so I was singing to him and just telling him "It's all done now baby, it's all over". He went back on the breast and stayed there the whole time they were doing his obs. His blood pressure was a bit high and they said they had to give him a bit of oxygen but otherwise he was fine.

The surgeon ran me through the op. The tried to remove as much as the plaque or scarring as they could but there was a lot that was just too solid to remove. The have created a hole in the scarring that covers his pupil so he "should" be able to see through that hole. When they were trying to remove some of the more solid scarring, they pulled some of his iris away so he has 2 stitches in his eye now. They put something called TPA in his eye to try to stop the scar tissue from coming back, so again, we just wait and see what happens.

We went back to recovery and just sat there quietly feeding for ages. We were the last ones there. The blood was starting to dry up and I was cleaning it off his face and arms. I was touching his whole little body and saw that they'd tried to put a drip in both his feet and both his arms and had finally settled on the underside of his right wrist, so he had all these little bruises on him.

At 7:10pm they said we could go home. I put him in his pram and as we were going through the underpass he looked up at me and smiled and oh, the love I felt for him just then! My brave little boy with his big patch on his eye and drip and bandage on his arm and his little bruises, and he could STILL smile! He is my best boy.

We got home and I sat on the couch and fed him for a while until he fell asleep. I put him in bed and finally ate something. Once I had the chance to actually breathe out I realised I was starving. I felt like I had been holding my breath all day.

The night wasn't so good, he would only sleep laying on my shoulder if I was sitting up. If I laid down with him he would just cry and cry. He had 2 lots of Panadol. I don't know how much sleep he got, maybe 5 hours. We have 2 lots of drops again, one to go in every hour and the other every 4 hours. He probably won't be able to wear his lens for another 2 weeks.

So that was his second surgery. At the end of the day, it's done now we just wait anad see again where this part of his PHPV journey takes him.

He is such a brave, amazing, strong, cuddly and gorgeous little boy. I know he is going to be amazing no matter what. I love him more than anything in the whole world, he is my little angel.

Surgery day

What a hectic morning! We've got the guys here fitting the new shower screen, Rich left for work about an hour ago and Annalise is begging to go to Granddad's house. I got a quick 2 minute shower in between bathing Joel and the shower guys arriving then I tried to put him down for a sleep but I didn't realise how noisy the ensuite would be lol. No sleep for him. He cut another tooth yesterday and there's one more coming, so he's almost got 4.

It's almost 9, I am dropping Annalise off at Granddad's at 10:30. Rich has called to say he has a cold and is going to the doctors at 11:50. We are meant to be at the hospital at 12. So it looks like I'm going by myself. I don't mind going there on my own so much, it's just the fasting part that hard for me because when Joel gets hungry and I'm holding him, well it's a lot harder than if Rich was holding him. Anyway. Man flu afflicts the best of them.

Joel's runny nose is gone but the chesty cough is still there.

Next time I'm here to post it will either be after surgery, or still before.

GA with a cough or cold

http://www.anesthesia-analgesia.org/content/100/1/59.full

Now I want them to wait to do the surgery, how scary.

Day before the surgery

He's coughing a lot. I don't think he's going to be well enough for a GA, I can hear all the phlegm rattling around in his chest.

I guess I'll just wait and see what happens tomorrow. I really want to just get it over and done with plus I have organised babysitters for Annalise because we will be gone all day (leave home at 10:30, drop her off, get to hospital by 12, surgery booked for 3, recovery until 5, peak hour traffic means we won't pick her up til almost 7). That's if the surgery is on time, if it goes ahead. Last time we had almost an hour wait for the surgeon. Ah well, tomorrow will tell.

All set for Monday

I just got the call from the hospital. His surgery is booked for 3pm on Monday. The pre op nurse said to just bring him in, last breastfeed at 12 noon, and see how he is. The Anethetist will make a decision on the day.

I patched him today. He FREAKED out, big time. I really don't think he can see much, if anything anymore :-(

Waiting waiting

Still waiting for the Anethetist to ring. It's 3:30, they said they'd ring between 2 and 5 so yes, there is still time I just wish they'd ring soon...

3 days til the op

And he's still not 100%. The Anethetist is due to ring me this afternoon to see how he's doing. All I'll be able to say is that his cough is worse but his nose isn't runny anymore.

I really hope they don't leave the decision up to me.

Persistent hyperplastic primary vitreous (PHPV), also known as persistent fetal vasculature, is a rare congenital developmental malformation of the eye, caused by the failure of regression of the primary vitreous. It is divided into anterior and posterior types and is characterized by the presence of a vascular membrane located behind the lens. The condition can be of an isolated type or can occur with other ocular disorders. Most cases of PHPV are sporadic, but it can be inherited as an autosomal dominant or recessive trait.

This is an excerpt from an abstract by Barkur Shastry in a study of Clinical and Experimental Opthamology. Over the next few days and weeks I will be doing a bit of research in regard to a link and will post anything interesting I find.

There has to be a link

I've just been reading another blog about a lady with a baby with PHPV. Her boy also has a cleft lip. My mum had a cleft lip and my brother had a cleft lip and palate. This isn't the first time I have seen the cleft lip/palate link on a PHPV board, blog or forum. There has be be more to it that just a coincidence.

If the chances of getting PHPV are "random" and 1 in a million and the chances of a cleft lip, alhough proven to be genetic, are also very small, how it is possible that there are so many kids born with both? Or if they don't have both, as in Joel's case, there is a family link somewhere down the line? I don't have a cleft lip or palate, neither does my other brother, but that gene is obviously in our makeup, there just has to be more to it than coincidence.

I wish there was more information. Not that it will help, I know that it's not going to change anything, my curious mind needs to know...

Still sick

This morning he's woken up with a cough too. I really don't think he's going to be well enough for the op.

I haven't been patching him for the last 3 days, he hasn't worn his lens either becuase of having the drops every few hours and taking it out and putting it back in. He is REALLY freaking out again while he's patched, so I am pretty sure he can see basically nothing again. Plus I was thinking that the surgery is only days away so those few days can't hurt but now....If his op isn't for another week, that could potentially be 2 weeks without the lens in :-( I feel terrible now, I wish I just pushed through it and put the lens in and kept patching. I don't even know how he'll go with the lens in today, his eyes are all red from this damn cold. I'm really frustrated.

Rich goes to Melbourne tomorrow for 4 days. He's back on Sunday. He's probably glad to be going so he doesn't have to listen to me going on about the op, lens, patching, drops, cold, coughs....

General Anesthetic and his cold

I just spoke to the Anethetist and he said to just watch Joel for the next 72 hours and see what happens. If it goes to his chest there's no way they'll put him under a GA, so I just hope it stays in his sinuses. Well, best hope is that it goes away totally.

I remember reading, in my research before his first GA, of a little baby who had complications following his surgery because he had a chesty cold 2 weeks before he was anethetised. It's pretty nerve racking stuff! I am really nervous for him. I really hope this cold goes away soon or else I am going to make myself even more nervous knowing there's that one extra risk.

I will just keep loading him up on breastmilk, that stuff is magic ;-)

Joel has a cold

I don't know what this means for the surgery. I know the hospital warned us last time that if he had a cold they probably wouldn't put him under a GA. I really hope it clears up by Monday. I've been researching about GA's and respiratory issues and it looks like it is very dangerous for babies so if he is still sick or if the cold is lingering I wouldn't risk it.

Sigh.

Green eyed monster

I have been debating whether or not to post this. I think there's a line between being honest and giving away too much of how I'm feeling but this just keeps coming up for me and I want to get it out.

I get really jealous, sad, angry and disappointed when I see a toddler with perfect eyes. All I can think is "Joel will never look like that". It kills me, it breaks my heart. I see this gorgeous little face looking at me and having this conversation with me, whether it's at the shops, park, playground - wherever - and I just get so sad that my little boy will never have these two perfect big round eyes. It just makes me so sad that I can't even look at another child without that thought in my head.

To me he is perfect. To me he is handsome and sweet and so loving and affectionate, so the feeling is contradictory. I want to not think "Joel will never look like that". I want to just appreciate the beauty in every child. I wish I could just talk to these other kids and think "wow, they're cute." But I can't. I hope over time it goes away.

Date for next surgery has been booked

It's Monday 5th July.

It's a good date because Rich goes to Melbourne for work from the 1st to the 4th of July, so he will be back just in time. The pre admissions lady will call over the next week to talk about how it will all go.

On the subject of surgery, I was so pleased the other day to have a win with our private insurance. The first surgery Joel had was supposed to be covered by our fund, MBF, but when we rang to confirm they said Joel wasn't covered for anything because I didn't call to add him to our policy within 8 weeks of him being born. I let it go at the time but after thinking about it for ages and having a friend say I should follow it up, I called them. It took about half an hour and lots of being put on hold while th lady spoke to her managers but they eventually came back and said that he will be covered because we have an exisiting family policy and there is no time frame to add another child to it. Joel's PHPV is considered pre-existing so they weren't covering anything to do with his eye, which meant for the next surgery we would have one of the students or Registrars doing it because PMH is a teaching hospital.

So between now and Monday week, I will just pray for my little man. God, heal him. Guide the surgeon's hand and be with our family through this next step of our journey. Give us wisdom and peace with the decisions we make for him and make his recovery as quick and painless as You can. We know that You are watching out for him and that You love him and we just pray that You will have your hand on Joel and heal his eye and make him see. Amen.

I haven't put his lens in today. It's getting really hard taking it out and putting it in all day. He is starting to get really angry when he knows it's coming and we were getting to a stage before where he was smiling when we were putting it in or out. It feels like I put the drops in, put the lens in, he sleeps, wakes up, feeds, lens out, drops in, sleep, wake up, lens in, feed, sleep, wake up, lens out, drops in... argh. It's too much for him. I will put the lens in when Rich gets home from picking Annalise up from kindy and we will patch him tonight when we have the time to distract and play with him.

A really great blog for parents

I found this today, after reading through 99% of it (have to take Annalise to kindy otherwise I would read the rest!) it's great. Very technical but still, a real eye opener - pardon the pun!

http://kidsretina.blogspot.com/search?updated-min=2007-01-01T00%3A00%3A00-06%3A00&updated-max=2008-01-01T00%3A00%3A00-06%3A00&max-results=12

Lots of amazing photos too.

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More praise

Today Joel was patched and he reached out and grabbed a big fluffy teddy. He smiled while he did it too. It wasn't directly in front of him, it was to the left of his head.

I am so sure that patching him while he has the drops is the right decision.

I spoke to his Optometrist today and told him that I am sure he can see something and he told me to keep patching.

I was thinking about it too - I know the lenses are expensive and yes we could wreck it with these drops, but we can always pay for another lens, we can't pay for another eye.

The doctors may think that the mesh of scarring stops him from seeing, but we know differently. All the prayer is being answered, I just know it.

Praise God.

When he's asleep

I go in and check on him. I sit there and just watch him, watch his little chest rise and fall, watch his lips form smiles and frowns and his beautiful little eyes squint and relax.

He has no idea now, and probably never will, of the weight I feel on me with some of the decisions I make for him . I am so blessed and so honoured to be his mum. He is such a special little man. God has a huge plan for his life, I just know it. We are so amazingly lucky to have him. He is just such a lovely, sweet, affectionate and gorgeous little boy. Thank you God for giving him to us.

My Plan

After sleeping on it, I have decided that I still want Joel to wear his lens and be patched for 2 hours a day. This is what I can come up with:

7am - wake up and drops in
8am - sleep
9am - wake
9 to 11am - lens in and patch on
11am - lens out and drops in
11:30am - sleep
2pm - wake
3pm - drops
3:30pm - sleep
5pm - wake
5:30 - 7pm - lens in and patch if the morning doesn't go to plan
7pm - drops
7:30pm - sleep

Fingers crossed.

Not the news we were hoping for

We had our appointment at PMH today. It was for 1:15 and I am used to waiting a while before we are seen but this time we weren't called until just after 2. We had a new Senior Registrar check Joel out and she couldn't find a red reflex in his eye. She was looking for a while and Joel was getting a bit upset. We laid him down and she looked in and after a while she said there was a huge air bubble behind his contact lens. I had a look and told her that it's actually the lens she's looking at. The "bubble" is the raised rounded top of his lens because he has such a high prescription. She agreed but still said she couldn't see much because his eye is "too small" and his pupil wasn't dilated. So, we had to get the dilation drops put in. She also told us she would have to get the Senior Surgeon to look as she hadn't seen a PHPV eye before. I was happy with that because the Senior Surgeon is Dr Lam, the one who did Joel's op. We had the drops put in and the "drop lady" as everyone calls her couldn't believe how good Joel was with it, he didn't even flinch. My brave boy. The drops make his pupil go really big, almost as big as the coloured part of the eye. They take about half an hour to work so we sat down and Joel had a little sleep until the drop lady came back and lifted his eyelid to see how big the pupil was. He woke up and screamed, what a shocking way to be woken up.

Finally the pupil was dialted so we went in and Dr Lam had a look but it took ages. Lots of fussing around and shining lights. That's when I knew it wasn't good.

What has happened is a mesh of scarring has formed across the eye where his natural lens should be (he had his lens removed during his first op). Dr Lam said it is highly unlikely Joel has been seeing anything, even with the contact lens. I asked about him grabbing the teething ring the other day and he said he may have just caught some light through a hole in the mesh across his eye at the time I held the ring up to him. Dr Lam is pretty convinced he can't see. I am not. I believe he can, even if it is just that tiny little bit of light that is getting through one of the holes. I absolutely refuse to give up hope for him. They say he can't see, I say he can. I love him and live with him and see him every day and I KNOW my little baby boy, I know he will smile at me with his patch on even when I don't make a sound in front of him. He may not be able to see far or clearly or colours or whatever, but he can see something.

So what next. He needs to have another operation to remove this scarring that has built up over his eye. They are just calling the op "polishing" the eye. Apparently Dr Lam hardly ever sees this happen. Lucky us.

How am I feeling? Sad. Angry. Disappointed. Why us. Why Joel. Will it ever end.

I knew he would have to have another operation, just not this soon and not for this reason. I thought he would have it a year down the track and more of a follow up to his previous operation, not for something completely new. I really wasn't expecting this news today.

His eye is also inflamed so we are back on the drops. Dr Lam said it's probably a pointless exercise to put his lens in every day if he can't see. The pharmacist also told me that with the particular drops he has, they can damage the lens and at $1450 a lens, it's probably not advisable. We also have to take the lens out to put the drops in and leave it out for an hour afterwards. I am a bit stuck because I KNOW he can see something with that lens in. What if I leave it out for the whole time he's on these drops, are all the hours of patching we've done in the last few months a waste of time? I know that when I don't patch his eye it starts to turn out towards his ears or in towards his nose. It is really frustrating and I feel stuck between a rock and a hard place.

His operation will be in 2 - 3 weeks time, enough time to let the drops work as they can't operate while his eye is inflamed but it's soon enough to prevent too much more scarring from happening.

My thoughts now - will the scarring just come back. How many times can they go in and polish it off. What if it just keeps coming back until they can't operate any more and his eye just dies. So many more "what ifs".

On one hand I am really sad for him. He's not even 6 months old and he will have had 2 surgeries. Why did he have to be born with this in the first place. What crossed my mind today was "damn you PHPV". Just damn it. It's so unfair. It really will never end.

On the other hand I am grateful he could even have the surgery, I don't regret having the first surgery even though that is 100% what has caused this new condition to arise. I still think we are doing the best for him even though as I type I am crying and my heart is breaking for my little man.

We'll get there. It's not over til it's over.