Comments on: Meet Parker http://www.prayingforparker.com Thu, 09 Sep 2010 23:22:03 +0000 http://wordpress.org/?v=2.9 hourly 1 By: Annette http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-453718 Annette Thu, 26 Aug 2010 11:58:26 +0000 http://www.prayingforparker.com/?page_id=810#comment-453718 Just a little info I would like to share with you. My daughter had trisomy 18. She was on a vent and oxygen 24/7. After her death, we had an autopsy done. The dr said that her brain was soft. He said that that happens when someone is on a vent for long periods of time. My daughter was 9-years-old when she died. Not one dr ever told me about the brain thing. BTW that's not why she died. She had a respiratory infection and unbeknown to us, the dr/hospital decided that her life was not worth the antibiotics that would save her. But you might want to ask a neuro about the brain becoming soft due to extended vent usage. Just a little info I would like to share with you. My daughter had trisomy 18. She was on a vent and oxygen 24/7. After her death, we had an autopsy done. The dr said that her brain was soft. He said that that happens when someone is on a vent for long periods of time. My daughter was 9-years-old when she died. Not one dr ever told me about the brain thing. BTW that’s not why she died. She had a respiratory infection and unbeknown to us, the dr/hospital decided that her life was not worth the antibiotics that would save her. But you might want to ask a neuro about the brain becoming soft due to extended vent usage.

]]> By: Tanya http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-453501 Tanya Mon, 23 Aug 2010 14:38:27 +0000 http://www.prayingforparker.com/?page_id=810#comment-453501 What an amazing boy! My daughter has a trach as well. Would love to discuss blenderized diets with you! What an amazing boy! My daughter has a trach as well. Would love to discuss blenderized diets with you!

]]> By: Amy http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-448062 Amy Thu, 01 Jul 2010 05:44:13 +0000 http://www.prayingforparker.com/?page_id=810#comment-448062 Hi tammy, it was so nice to see a discription of what Parker's medical history was, I've popped by before and always wondered!!! I wanted to ask you, where dose Parker stand now in his surgeries? Has his PASP been completed? I ask because reading this and the trouble you've had with the price of the surgeries that are required to save your sons life, it makes me soo glad to be a Canadian. Did you know that if you or your husband got a job in Canada would be covered by one of our Provinces (which ever you moved to, but Ontario is by far one of the best!) health care system?? You would get some immediate things covered but after 3 or 6 months (forgive me, I can't recall which) you would be covered fully? That includes surgeries, and here in Ontario we have the Sick Kids, (The Toronto Hospital for Sick Children) which is one of the best children's hospitals in North America, and the world. We have many leaders in many fields at this hospital, I have seen many of the special needs children I have worked with treated there. I don't know how many big surgeries, if any, that Parker has remaining but reading this, I just thought I would mention it. Who knows, if might come in handy one day. Plus Canada is a very nifty place to live :) Amy p.s what font is this? I LOVE it!!! Hi tammy, it was so nice to see a discription of what Parker’s medical history was, I’ve popped by before and always wondered!!! I wanted to ask you, where dose Parker stand now in his surgeries? Has his PASP been completed? I ask because reading this and the trouble you’ve had with the price of the surgeries that are required to save your sons life, it makes me soo glad to be a Canadian. Did you know that if you or your husband got a job in Canada would be covered by one of our Provinces (which ever you moved to, but Ontario is by far one of the best!) health care system?? You would get some immediate things covered but after 3 or 6 months (forgive me, I can’t recall which) you would be covered fully? That includes surgeries, and here in Ontario we have the Sick Kids, (The Toronto Hospital for Sick Children) which is one of the best children’s hospitals in North America, and the world. We have many leaders in many fields at this hospital, I have seen many of the special needs children I have worked with treated there. I don’t know how many big surgeries, if any, that Parker has remaining but reading this, I just thought I would mention it. Who knows, if might come in handy one day. Plus Canada is a very nifty place to live :)

Amy
p.s what font is this? I LOVE it!!!

]]> By: Angela http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-427780 Angela Fri, 15 Jan 2010 20:20:47 +0000 http://www.prayingforparker.com/?page_id=810#comment-427780 Thank you for sharing your story. My precious little Logan is 6 months old tomorrow and we found out today that she may possibly have PPH. She is going for a cath on tuesday to find out if that is the case. She has an ASD (8mm) which I pray is the cause of her problems as that can be fixed relatively easily. If you have time, I would really appreciate any advice or information you have on PPH as I really know nothing about it and the research I have done today has scared the life out of me! I would really like to know what to ask the cardiologist regarding treatment, long term pronosis etc if you have any advice you can offer. I should also add that Logan having Downs is nothing in comparison to this. In fact, Downs is probably the best thing that ever happened to me, it changed me as a person and I could not love my beautiful little girl any more than I do. Today is the worse day of my life, finding out that Logan was Downs pales in comparison to the news I received today. Thank you so much. Angela Thank you for sharing your story.

My precious little Logan is 6 months old tomorrow and we found out today that she may possibly have PPH. She is going for a cath on tuesday to find out if that is the case.

She has an ASD (8mm) which I pray is the cause of her problems as that can be fixed relatively easily.

If you have time, I would really appreciate any advice or information you have on PPH as I really know nothing about it and the research I have done today has scared the life out of me!

I would really like to know what to ask the cardiologist regarding treatment, long term pronosis etc if you have any advice you can offer.

I should also add that Logan having Downs is nothing in comparison to this. In fact, Downs is probably the best thing that ever happened to me, it changed me as a person and I could not love my beautiful little girl any more than I do. Today is the worse day of my life, finding out that Logan was Downs pales in comparison to the news I received today.

Thank you so much.

Angela

]]> By: Linda @ Craftaholics Anonymous http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-427227 Linda @ Craftaholics Anonymous Sun, 10 Jan 2010 18:20:02 +0000 http://www.prayingforparker.com/?page_id=810#comment-427227 Hi Tammy, Thank you for your comment on my blog so I could come find yours. What a little trouper you have. And what trials. You are a brave woman! I wish you and your family the best. I'll have to look around more and read more. best wishes, Linda Hi Tammy,
Thank you for your comment on my blog so I could come find yours. What a little trouper you have. And what trials. You are a brave woman! I wish you and your family the best. I’ll have to look around more and read more.
best wishes,
Linda

]]> By: Jo http://www.prayingforparker.com/meet-parker/comment-page-1/#comment-425905 Jo Wed, 30 Dec 2009 03:11:50 +0000 http://www.prayingforparker.com/?page_id=810#comment-425905 I think you forgot to add one of Parker's diagnoses - obscene cuteness! Seriously, what a handsome little guy. Thanks for sharing! I think you forgot to add one of Parker’s diagnoses – obscene cuteness! Seriously, what a handsome little guy. Thanks for sharing!

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