Hi folks Georgie has been sick a lot again lately days and nights blur into weeks somehow so couldn't really say how long.
We have had a turn of events with the nursing side of things.
First a nurse resigned then the nurse in charge of the Uniting Care resigned (her mum going into a nursing home in NZ) then another nurse has resigned leaving only two nurses in the agency. They have other clients besides ourselves so yesterday I was called by the nurse and went home and she left and the afternoon shift did not come out.
Today no nurse at all.
Without nursing help Ange will have to stop work altogether and I may have to consider what I do with work.
We are going to approach Baptist Community Services again though a year ago they told me they don't look after kids only elderly folks.
We don't know of any other agencies around Dubbo. There is supposed to be no trouble with funding but now just not enough nurses.
Wednesday, March 31, 2010
Tuesday, March 23, 2010
tuesday
Terrible evening yesterday.
We received a letter from Westmead today to say they were increasing investigations into epilepsies in children. They do not think that it will help Georgie but may help them understand more about epilepsy in children and possible future treatments.
Most web sites say they can only determine why 3 in 10 children get epilepsy or have fits.
Psalm 73 (Of Asaph)
When my heart was soured; and I was wounded to the core,
I was but brutish and ignorant;
no better than a beast before you.
Nevertheless I am always with you,
for you hold me by my right hand.
You will guide me with your counsel;
and afterwards you will lead me to glory.
Whom have I in heaven but you?
and there is no one upon earth that I desire in comparison with you.
We received a letter from Westmead today to say they were increasing investigations into epilepsies in children. They do not think that it will help Georgie but may help them understand more about epilepsy in children and possible future treatments.
Most web sites say they can only determine why 3 in 10 children get epilepsy or have fits.
Psalm 73 (Of Asaph)
When my heart was soured; and I was wounded to the core,
I was but brutish and ignorant;
no better than a beast before you.
Nevertheless I am always with you,
for you hold me by my right hand.
You will guide me with your counsel;
and afterwards you will lead me to glory.
Whom have I in heaven but you?
and there is no one upon earth that I desire in comparison with you.
Monday, March 22, 2010
Monday
Hi the usual ups and downs with Georgie. She was somewhat better again over the weekend. ie she had no temperatures. Yesterday afternoon was one of those rare times when she is a bit awake and peaceful even looking a bit more contented at times. Last night she had another choking episode.
Things have been settling a bit with the nursing staff. I don't know what caused the trouble nor why it settled but we have been praying it would.
A verse I've been thinking about "For David after he had served God's will and purpose and counsel in his own generation, fell asleep"
Things have been settling a bit with the nursing staff. I don't know what caused the trouble nor why it settled but we have been praying it would.
A verse I've been thinking about "For David after he had served God's will and purpose and counsel in his own generation, fell asleep"
Friday, March 12, 2010
Friday
Not the best night for Georgie. Been settled this morning's shift though. Mum and Dad visiting this weekend which will be lovely - Mum always does all of the cooking! (and we always get a roast- she knows what makes men happy!)
As always prayer for wisdom - hard to make sound judgements when you are so fatigued.
We do have a home visiting GP called Sandra now who is a Christian also and who tries to be helpful and positive.
A friend Julie who works for Uniting church chaplaincy from Hillston just rang to see how we all were. She spoke about a guy in Hillston who makes these little carved wooden "holding crosses". Julie said she would never have thought of them once but has given a few away after disasters and so on. Sometimes there are no words and they just hold these crosses and it gives folks something to hold that keeps them clinging to God when there are no words. The fellow who makes them said he just gives them away down the street; grown men have wept on his shoulder. What a wonderful God who puts such things into the hearts of men.
She also spoke about a "thanksgiving" service to God with the combined churches to thank God for the rain he has sent. They held it at the banks of the Lachlan river as the river was rushing past them and had been so dry for so long.
I read an amazing story to Georgie the other night - the sort where you stop reading audibly and just read on silently until the person says keep reading- only Georgie couldn't. It was of a woman who became a Christian through the prayer of a neighbour even though when she met that person her heart was hard. This person kept praying for her for 7 years. She was a wealthy business woman but she sold her three businesses and set up a Christian organisation.
She smuggled bibles into China. She took two sacks of bibles to a house but all of the believers had been arrested by the authorities. She found a ladder to an attic and climbed up it. She found rough hand made pews and knew this was their church. She waited and prayed. After a while a little old toothless woman came out from behind a false wall. She showed her inside and all of these children were hidden in there. The families of all those taken away. A book shelf was there with hand copied bibles on it that the children wrote out a page per day. A man was there who had been continually praying for ten days for someone to bring them bibles.
Matthew 5:6 Blessed are those who hunger and thirst after righteousness, forthey shall be filled.
As always prayer for wisdom - hard to make sound judgements when you are so fatigued.
We do have a home visiting GP called Sandra now who is a Christian also and who tries to be helpful and positive.
A friend Julie who works for Uniting church chaplaincy from Hillston just rang to see how we all were. She spoke about a guy in Hillston who makes these little carved wooden "holding crosses". Julie said she would never have thought of them once but has given a few away after disasters and so on. Sometimes there are no words and they just hold these crosses and it gives folks something to hold that keeps them clinging to God when there are no words. The fellow who makes them said he just gives them away down the street; grown men have wept on his shoulder. What a wonderful God who puts such things into the hearts of men.
She also spoke about a "thanksgiving" service to God with the combined churches to thank God for the rain he has sent. They held it at the banks of the Lachlan river as the river was rushing past them and had been so dry for so long.
I read an amazing story to Georgie the other night - the sort where you stop reading audibly and just read on silently until the person says keep reading- only Georgie couldn't. It was of a woman who became a Christian through the prayer of a neighbour even though when she met that person her heart was hard. This person kept praying for her for 7 years. She was a wealthy business woman but she sold her three businesses and set up a Christian organisation.
She smuggled bibles into China. She took two sacks of bibles to a house but all of the believers had been arrested by the authorities. She found a ladder to an attic and climbed up it. She found rough hand made pews and knew this was their church. She waited and prayed. After a while a little old toothless woman came out from behind a false wall. She showed her inside and all of these children were hidden in there. The families of all those taken away. A book shelf was there with hand copied bibles on it that the children wrote out a page per day. A man was there who had been continually praying for ten days for someone to bring them bibles.
Matthew 5:6 Blessed are those who hunger and thirst after righteousness, forthey shall be filled.
Thursday, March 11, 2010
Thursday
Georgie sick again today and shaky from infection
We will try to get antibiotics again today for her. This UTI she picked up in hospital is proving very persistent.
Be joyful in hope, patient in affliction, faithful in prayer Romans 12:12
How different to the world. We often feel the chief aim of some medicos is to destroy our hope. They even mock us at times sometimes behind our backs and sometimes to our face.
Yes it is hard to forgive but we know it is not an option not to. Pray for your enemies.....
It is so hard to love someone who thinks your daughter should die. God created man and they not only wanted his son to die but carried it out.
We will try to get antibiotics again today for her. This UTI she picked up in hospital is proving very persistent.
Be joyful in hope, patient in affliction, faithful in prayer Romans 12:12
How different to the world. We often feel the chief aim of some medicos is to destroy our hope. They even mock us at times sometimes behind our backs and sometimes to our face.
Yes it is hard to forgive but we know it is not an option not to. Pray for your enemies.....
It is so hard to love someone who thinks your daughter should die. God created man and they not only wanted his son to die but carried it out.
Monday, March 8, 2010
Monday
Hi all not much to report but just thought I'd put a couple of pics up of where we take Georgie for a walk.
Georgie Ok but fairly unsettled last few days. Asleep all day and awake all night- life goes on i guess! Ange and I are still smarting from all the accusation and humiliation of the meeting last week. Trying to pray for them and just forget it all.
James has a new pet - a baby hare which we found when we were slashing the long grass in the back paddock on the weekend. It is amazing how these little creatures can just live out in the paddock surviving heat, cold and rain. They don't live in a burrow like a rabbit but just in a grass "form". After giving birth the mother deposits the babies around the paddock and then visits each of them to feed them. The babies naturally lie still to hide. When the mother goes to feed them she takes a different route and will jump a long way sideways to break up the scent trail. Creation never ceases to amaze us.
More beautiful rain out here over weekend with another 60mm. The country is transformed. Many farmers are saying this is now the best summer/autumn for 20 years.
"In my distress I called to the Lord;
he answered me and set me free.
The Lord is with me, I will not be afraid;
what can anyone do to me?
It is the Lord who helps me,
and I will see my enemies defeated.
It is better to trust in the Lord
than to depend on man.
It is better to trust in the Lord
than to depend on human leaders.
Ps 118 v 5 to 9
Wednesday, March 3, 2010
Wednesday
Happy birthday to Mum!
Well we got through the meeting today - just. They had started the meeting with an "end-of-life" plan and discussions about the use of morphine etc so not a good way to start.......They get so bogged down in all of this stuff.
I walked in to find about ten stony-faced people in the room. (brought back memories of all those dreadful meetings at Westmead) Ange had been delayed until the main meeting was finished as HomeCare had forgotten to roster a nurse on at home while we went to the meeting they had organised.
The funding for the home care help should continue but the additional funding for some extra things may not continue after June. The home care ladies and the hospital NUM and Lourdes hospital lady were all so helpful and kind as they always are. I cannot praise them enough.
They do not have the right facilities or surgeon to take Georgie's central line out in Dubbo and it is full of infection so it never gets used and now not even flushed anymore as each time it gets flushed Georgie gets the shakes due to a sudden influx of germs. It is now just a useless piece of paraphernalia that gives her infections and is a hazard.
There was some talk of a medication review which I've asked about for some time but they said she would have to go to Sydney for it. (Late last year the hospital Dr suddenly decided she did not need one of the anti-epileptics anymore (because it cost too much) and just reduced it by half overnight and said you can take her home now. I refused and said she can stay in here for a few days until you can observe whether it works or not - which it didn't at that time.)
Maybe they can do both while she is down there - if she goes? Something else to pray about. Somehow I have always thought she would go back to visit Westmead again.
Sometimes it is strange but I actually miss it. I miss those folks who are so full of faith who come and with passion pour out their hearts to the Lord for Georgie. Those who dreamed dreams and saw visions - really did. Those who saw angels in Georgie's room - even nurses. We found a Dr in ICU just sitting in the corner in the dark one night. Ange asked him what he was doing and he said "I don't know really it was just so peaceful in here i couldn't leave". The prayer walking and the friendship to other families in distress and church and prayer meetings in Sydney and of course having our family around.
Em said at the table last night she wants a birthday this year as it will probably be her last one at home for a while as she hopes to go off next year when she has finished school. It has all gone too quickly. (I am sure I was just feeding her with a bottle last week...)
Thankyou for praying for Ken and Col. I have not been able to find out if Col was able to share anything with Ken or not. Ken passed away on Friday and his funeral was today.
I have been reading a lot lately and particularly enjoying a book called "Hardcore Christianity" by Angus Buchan. Some of you may have seen a movie about him called "faith like potatoes".
He is a 58 yr old South African farmer and evangelist. He has been running Christian men's conferences on his farm for some years now and this year they expect 400,000 men. There are many amazing and miraculous stories in it. People raised from the dead, cripples made to walk, deaf ears unstopped and many many conversions. Sometimes people are just not healed - he does not know why- that is the Lord's business he says.His is to preach the gospel and to do what James says to lay hands on the sick and pray the prayer of faith. His priority is for the gospel - the other things follow.
Well we got through the meeting today - just. They had started the meeting with an "end-of-life" plan and discussions about the use of morphine etc so not a good way to start.......They get so bogged down in all of this stuff.
I walked in to find about ten stony-faced people in the room. (brought back memories of all those dreadful meetings at Westmead) Ange had been delayed until the main meeting was finished as HomeCare had forgotten to roster a nurse on at home while we went to the meeting they had organised.
The funding for the home care help should continue but the additional funding for some extra things may not continue after June. The home care ladies and the hospital NUM and Lourdes hospital lady were all so helpful and kind as they always are. I cannot praise them enough.
They do not have the right facilities or surgeon to take Georgie's central line out in Dubbo and it is full of infection so it never gets used and now not even flushed anymore as each time it gets flushed Georgie gets the shakes due to a sudden influx of germs. It is now just a useless piece of paraphernalia that gives her infections and is a hazard.
There was some talk of a medication review which I've asked about for some time but they said she would have to go to Sydney for it. (Late last year the hospital Dr suddenly decided she did not need one of the anti-epileptics anymore (because it cost too much) and just reduced it by half overnight and said you can take her home now. I refused and said she can stay in here for a few days until you can observe whether it works or not - which it didn't at that time.)
Maybe they can do both while she is down there - if she goes? Something else to pray about. Somehow I have always thought she would go back to visit Westmead again.
Sometimes it is strange but I actually miss it. I miss those folks who are so full of faith who come and with passion pour out their hearts to the Lord for Georgie. Those who dreamed dreams and saw visions - really did. Those who saw angels in Georgie's room - even nurses. We found a Dr in ICU just sitting in the corner in the dark one night. Ange asked him what he was doing and he said "I don't know really it was just so peaceful in here i couldn't leave". The prayer walking and the friendship to other families in distress and church and prayer meetings in Sydney and of course having our family around.
Em said at the table last night she wants a birthday this year as it will probably be her last one at home for a while as she hopes to go off next year when she has finished school. It has all gone too quickly. (I am sure I was just feeding her with a bottle last week...)
Thankyou for praying for Ken and Col. I have not been able to find out if Col was able to share anything with Ken or not. Ken passed away on Friday and his funeral was today.
I have been reading a lot lately and particularly enjoying a book called "Hardcore Christianity" by Angus Buchan. Some of you may have seen a movie about him called "faith like potatoes".
He is a 58 yr old South African farmer and evangelist. He has been running Christian men's conferences on his farm for some years now and this year they expect 400,000 men. There are many amazing and miraculous stories in it. People raised from the dead, cripples made to walk, deaf ears unstopped and many many conversions. Sometimes people are just not healed - he does not know why- that is the Lord's business he says.His is to preach the gospel and to do what James says to lay hands on the sick and pray the prayer of faith. His priority is for the gospel - the other things follow.
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