Thursday, July 29, 2010
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.
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.
"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.
Tuesday, July 27, 2010
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.
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
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
Monday, July 26, 2010
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.
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.
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