Comments on: Advice please http://american-family.org/2007/10/14/advice-please/ Wed, 17 Mar 2010 20:02:16 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: American Family » Hoping for miracles. http://american-family.org/2007/10/14/advice-please/comment-page-1/#comment-82528 American Family » Hoping for miracles. Tue, 20 May 2008 01:58:56 +0000 http://american-family.org/2007/10/14/advice-please/#comment-82528 [...] The terrible tragedies in Myanmar and China are weighing heavily on my heart.  If they weren’t enough, we have two medical crises that are hitting close to home.  My uncle has had a heart valve condition most of his life.  He recently had what should have been a pretty low-risk surgery, but it was botched somehow and both his heart and kidneys were severely damaged.  Just this week, he was admitted to a new hospital far from home and 90% of his heart was removed.  He is currently surviving with a completely artifici*al heart.  My uncle has always been one of the most fit and athletic people in our family.  He is only about 45 years old and his youngest son is 6 years old.  It is difficult to imagine him being so ill.   In the best case scenario, he will be living in the hospital for the next 3-6 months.  They are hoping that he can survive with the art*ificial heart long enough to make it onto the heart transplant list.   We also have friends who are facing a medical crisis with their baby girl.  (I mentioned them a while back.)  The last few months have been a rollercoaster for them.  Right now, they are facing a potentially life-saving surgery, which may also be very risky.  They are currently taking turns sleeping and living at the hospital, while the other takes care of their older son.  I can’t begin to imagine how difficult it must be. [...] [...] The terrible tragedies in Myanmar and China are weighing heavily on my heart.  If they weren’t enough, we have two medical crises that are hitting close to home.  My uncle has had a heart valve condition most of his life.  He recently had what should have been a pretty low-risk surgery, but it was botched somehow and both his heart and kidneys were severely damaged.  Just this week, he was admitted to a new hospital far from home and 90% of his heart was removed.  He is currently surviving with a completely artifici*al heart.  My uncle has always been one of the most fit and athletic people in our family.  He is only about 45 years old and his youngest son is 6 years old.  It is difficult to imagine him being so ill.   In the best case scenario, he will be living in the hospital for the next 3-6 months.  They are hoping that he can survive with the art*ificial heart long enough to make it onto the heart transplant list.   We also have friends who are facing a medical crisis with their baby girl.  (I mentioned them a while back.)  The last few months have been a rollercoaster for them.  Right now, they are facing a potentially life-saving surgery, which may also be very risky.  They are currently taking turns sleeping and living at the hospital, while the other takes care of their older son.  I can’t begin to imagine how difficult it must be. [...]

]]> By: Cathy http://american-family.org/2007/10/14/advice-please/comment-page-1/#comment-56677 Cathy Tue, 16 Oct 2007 22:07:43 +0000 http://american-family.org/2007/10/14/advice-please/#comment-56677 Another Hmmm to Lin- Jade was a personable child, who was very smart and a good student. She had a Master's degree and taught English as a second language. She was also an on-call translator. Intelligence was never a problem! Latex allergy and ever recurring soft tissue infections were. The problems of SB children are as varied as the children themselves. and, there are days when the parents need to be assured that they are strong enough to pull it all off. because there are days when they truly think they just can't go on. Another Hmmm to Lin- Jade was a personable child, who was very smart and a good student. She had a Master’s degree and taught English as a second language. She was also an on-call translator. Intelligence was never a problem! Latex allergy and ever recurring soft tissue infections were. The problems of SB children are as varied as the children themselves. and, there are days when the parents need to be assured that they are strong enough to pull it all off. because there are days when they truly think they just can’t go on.

]]> By: Lisa F. http://american-family.org/2007/10/14/advice-please/comment-page-1/#comment-56627 Lisa F. Tue, 16 Oct 2007 03:51:16 +0000 http://american-family.org/2007/10/14/advice-please/#comment-56627 Hmmm, to Lin- the outcome of SB is as varied as the kids who have it. Some people have virtually no long term effects except a scar on their backs. There is some celebrity, Oh, I want to say John Cougar Mellencamp, who was born with spina bifida. I dated a guy with SB who had a L7 SCI and a latex allergy but who was a Ph.D. and had no other mental issues. I have taken care of and taught kids that were full quadriplegics with significant cognitive delays. When people start saying stuff like, "if he talks a lot that means he has an outgoing verbal personality that is a part of the learning disability that results from auditory overload. SB kids are kids. They are individuals and will have their issues and problems and gifts that come up as they go along. And, guess what? They ARE fine. Hmmm, to Lin- the outcome of SB is as varied as the kids who have it. Some people have virtually no long term effects except a scar on their backs. There is some celebrity, Oh, I want to say John Cougar Mellencamp, who was born with spina bifida. I dated a guy with SB who had a L7 SCI and a latex allergy but who was a Ph.D. and had no other mental issues. I have taken care of and taught kids that were full quadriplegics with significant cognitive delays.

When people start saying stuff like, “if he talks a lot that means he has an outgoing verbal personality that is a part of the learning disability that results from auditory overload. SB kids are kids. They are individuals and will have their issues and problems and gifts that come up as they go along. And, guess what? They ARE fine.

]]> By: Lin http://american-family.org/2007/10/14/advice-please/comment-page-1/#comment-56620 Lin Tue, 16 Oct 2007 00:40:26 +0000 http://american-family.org/2007/10/14/advice-please/#comment-56620 Don't give the baby any gifts of clothing or toys that contain latex. Most people with SB either have, or eventually develop latex allergy which can be deadly. That includes clothing with elastic in the sleeves and pacifiers that are not silicone. Do not give parenting advice to these parents. That's the last thing they need. Do not be Miss Happy Positive and keep telling the family about the miracle child with SB who overcame all obstacles and that the child will be "just fine" etc.... Of course, needless to say, don't give a doom and gloom outlook either. When the child is a toddler he or she might appear mentally just fine, very outgoing and talkative. Do not start telling the family that the child is "fine" mentally or even gifted. This outgoing verbal personality is a part of the learning disorders that are manifest through auditory over-use. When you see a SB child like this remember that when he or she is in 3rd or 4th grade their academic world starts to fall apart. Convincing the parents that the child is very bright and has escaped learning problems is not good. As the learning problems manifest the parents are usually devastated and since the child presented as bright so early the child is blamed. Do not say things like "God knew you were just the parents for this child" or that God picks special parents. Give me a break. Lots of these poor kids are mistreated or abandoned to the foster system. God does not pick special parents to punish with a SB child nor does he pick specially equipped parents. Some suffer divorce and breakdowns. Sincerely, Lin Don’t give the baby any gifts of clothing or toys that contain latex. Most people with SB either have, or eventually develop latex allergy which can be deadly. That includes clothing with elastic in the sleeves and pacifiers that are not silicone.
Do not give parenting advice to these parents. That’s the last thing they need. Do not be Miss Happy Positive and keep telling the family about the miracle child with SB who overcame all obstacles and that the child will be “just fine” etc…. Of course, needless to say, don’t give a doom and gloom outlook either.
When the child is a toddler he or she might appear mentally just fine, very outgoing and talkative. Do not start telling the family that the child is “fine” mentally or even gifted. This outgoing verbal personality is a part of the learning disorders that are manifest through auditory over-use. When you see a SB child like this remember that when he or she is in 3rd or 4th grade their academic world starts to fall apart.
Convincing the parents that the child is very bright and has escaped learning problems is not good. As the learning problems manifest the parents are usually devastated and since the child presented as bright so early the child is blamed.
Do not say things like “God knew you were just the parents for this child” or that God picks special parents. Give me a break. Lots of these poor kids are mistreated or abandoned to the foster system. God does not pick special parents to punish with a SB child nor does he pick specially equipped parents. Some suffer divorce and breakdowns.
Sincerely,
Lin

]]> By: spacemom http://american-family.org/2007/10/14/advice-please/comment-page-1/#comment-56612 spacemom Mon, 15 Oct 2007 17:50:52 +0000 http://american-family.org/2007/10/14/advice-please/#comment-56612 IT sounds like you have the basics covered. Help with childcare, celebrate the new child as you would any child, be avaiable for emotional support... Good luck to your friend IT sounds like you have the basics covered. Help with childcare, celebrate the new child as you would any child, be avaiable for emotional support…

Good luck to your friend

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