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Worst nightmare comes true

Witaj
Cieszę się Hermanie że twoja wnuczka ma się dobrze, i będę się modlił o jej powrót do zdrowia
 
Steef66 said:
It’s good to hear that the little girl is doing well. She looks great.

And let’s hope that the medication will be covered by insurance in the Netherlands in the future. It’s actually crazy that this has to be an issue in one of the wealthiest countries.
Click to expand...
Thank you Stephan.
It really is crazy, the insurance companies are gaining far too much power.
 
So glad to hear this news for Maia. I pray God continues to answer all the prayers for this little girl and her family.
 
I can understand the issues and loss of sleep for you and the parents.

My first born had issues with delivery and it caused bleeding in the head and breathing issues when born, he was given 50 percent chance of making 24 hours, and he is now 45 years old.

He spent 31 days in Neonatal ICU at hospital, and came home on Christmas Eve.

We had to learn how to insert feeding tube and feed him at the hospital and then do it at home for another 60 days before he was drinking enough formula to stay healthy.

We had great friends helping and our church family, and one friend who lived a few blocks away who was also a nurse at the ICU he came from who checked in on him as needed.

As my pastor told me "God give the Special Souls to those he trusts to care for them"
 
Dean62 said:
Herman, I’m a little late, as I just read this. My prayers are with you and your family and you’re beautiful granddaughter. I pray she will be healed and can resume a normal healthy life soon!
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Thank you Dean. It seems the many prayers and well wishes have been answered. For now 2 times a week hemodialysis is still sufficient and her medicine works well.
The 4 people with the right bloodtype who are willing to donate a kidney are through the first screening and will have their blood/tissue tested somewhere next month.
 
Herman said:
Thank you Dean. It seems the many prayers and well wishes have been answered. For now 2 times a week hemodialysis is still sufficient and her medicine works well.
The 4 people with the right bloodtype who are willing to donate a kidney are through the first screening and will have their blood/tissue tested somewhere next month.
Click to expand...
That is good news Herman, much more important than building a shipmodel.
 
Herman said:
Thank you Dean. It seems the many prayers and well wishes have been answered. For now 2 times a week hemodialysis is still sufficient and her medicine works well.
The 4 people with the right bloodtype who are willing to donate a kidney are through the first screening and will have their blood/tissue tested somewhere next month.
Click to expand...

Excellent news! Amen!
 
I want to share with you the latest news regarding our granddaughter Maia. Today she turned one, a milestone we celebrated in grand style yesterday.
As I wrote earlier the prayers and well wishes have been answered, she is doing well, even far above the best expectations. She responds very well to the medication, ranking in the top 5.
In the last months the hemodialysis has been reduced to once per week, once per two weeks and as the regular blood analysis (once per 1,5 week in combi with flushing/renewing the dialysis tube) stays at this level, the periods between hemodialysis is adjusted. At this moment she is in her 5th week without dialysis.
This also means her kidneys are functioning on an acceptable level, about 60% where they were functioning on the age of 3 months only for about 8%. We do need to take into account that this high percentage is achieved partly because she receives about 1.5 liters of fluid daily via tube feeding—which, as I understand it, is roughly double what a peer of hers requires. So she will need tube feeding for several more years. Due to scar tissue, earlier damage, her kidneys will likely not grow, there might be some progression as the build up of calcium in the kidneys might be broken down over the years. So she will likely outgrow her kidneys and will need a kidney transplantation in the future, but not, as earlier planned, when she is about 10-12 kilos.
So we already call her the miracle child. Once again, thank you all for your involvement.

Maia.jpg
 
Herman said:
I want to share with you the latest news regarding our granddaughter Maia. Today she turned one, a milestone we celebrated in grand style yesterday.
As I wrote earlier the prayers and well wishes have been answered, she is doing well, even far above the best expectations. She responds very well to the medication, ranking in the top 5.
In the last months the hemodialysis has been reduced to once per week, once per two weeks and as the regular blood analysis (once per 1,5 week in combi with flushing/renewing the dialysis tube) stays at this level, the periods between hemodialysis is adjusted. At this moment she is in her 5th week without dialysis.
This also means her kidneys are functioning on an acceptable level, about 60% where they were functioning on the age of 3 months only for about 8%. We do need to take into account that this high percentage is achieved partly because she receives about 1.5 liters of fluid daily via tube feeding—which, as I understand it, is roughly double what a peer of hers requires. So she will need tube feeding for several more years. Due to scar tissue, earlier damage, her kidneys will likely not grow, there might be some progression as the build up of calcium in the kidneys might be broken down over the years. So she will likely outgrow her kidneys and will need a kidney transplantation in the future, but not, as earlier planned, when she is about 10-12 kilos.
So we already call her the miracle child. Once again, thank you all for your involvement.

View attachment 632705
Click to expand...
Beautiful Child, Blessings health and happiness.
 
Herman said:
I want to share with you the latest news regarding our granddaughter Maia. Today she turned one, a milestone we celebrated in grand style yesterday.
As I wrote earlier the prayers and well wishes have been answered, she is doing well, even far above the best expectations. She responds very well to the medication, ranking in the top 5.
In the last months the hemodialysis has been reduced to once per week, once per two weeks and as the regular blood analysis (once per 1,5 week in combi with flushing/renewing the dialysis tube) stays at this level, the periods between hemodialysis is adjusted. At this moment she is in her 5th week without dialysis.
This also means her kidneys are functioning on an acceptable level, about 60% where they were functioning on the age of 3 months only for about 8%. We do need to take into account that this high percentage is achieved partly because she receives about 1.5 liters of fluid daily via tube feeding—which, as I understand it, is roughly double what a peer of hers requires. So she will need tube feeding for several more years. Due to scar tissue, earlier damage, her kidneys will likely not grow, there might be some progression as the build up of calcium in the kidneys might be broken down over the years. So she will likely outgrow her kidneys and will need a kidney transplantation in the future, but not, as earlier planned, when she is about 10-12 kilos.
So we already call her the miracle child. Once again, thank you all for your involvement.

View attachment 632705
Click to expand...
Great news Herman! Magic Mike
 
Herman said:
I want to share with you the latest news regarding our granddaughter Maia. Today she turned one, a milestone we celebrated in grand style yesterday.
As I wrote earlier the prayers and well wishes have been answered, she is doing well, even far above the best expectations. She responds very well to the medication, ranking in the top 5.
In the last months the hemodialysis has been reduced to once per week, once per two weeks and as the regular blood analysis (once per 1,5 week in combi with flushing/renewing the dialysis tube) stays at this level, the periods between hemodialysis is adjusted. At this moment she is in her 5th week without dialysis.
This also means her kidneys are functioning on an acceptable level, about 60% where they were functioning on the age of 3 months only for about 8%. We do need to take into account that this high percentage is achieved partly because she receives about 1.5 liters of fluid daily via tube feeding—which, as I understand it, is roughly double what a peer of hers requires. So she will need tube feeding for several more years. Due to scar tissue, earlier damage, her kidneys will likely not grow, there might be some progression as the build up of calcium in the kidneys might be broken down over the years. So she will likely outgrow her kidneys and will need a kidney transplantation in the future, but not, as earlier planned, when she is about 10-12 kilos.
So we already call her the miracle child. Once again, thank you all for your involvement.

View attachment 632705
Click to expand...
That is wonderful news and a beautiful picture, Herman. I am sure she had a very fine 1st Bithday and wish her all the best!
Regards, Peter
 
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