Comments on: 7 Ways to Advocate for Your Child in the Health Care Community http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/ for my child Thu, 09 Feb 2012 19:47:39 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Jolene http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-92 Jolene Thu, 18 Feb 2010 19:56:47 +0000 http://www.differentdream.com/?p=1528#comment-92 Hi Lynette, Wow - you are dealing with a lot. My father was bedridden for most of my childhood, and we cared for him at home. I know what you mean about support petering out after the crisis is over. I'll address more of the issues you're talking about as time goes by. If you find any good resources, let me know! Hugs to you, Jolene Hi Lynette,
Wow – you are dealing with a lot. My father was bedridden for most of my childhood, and we cared for him at home. I know what you mean about support petering out after the crisis is over. I’ll address more of the issues you’re talking about as time goes by. If you find any good resources, let me know!

Hugs to you,
Jolene

]]> By: Lynette http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-91 Lynette Thu, 18 Feb 2010 14:57:25 +0000 http://www.differentdream.com/?p=1528#comment-91 jolene, my daughter is cancer free now, but she suffered devastating complications that has her on a vent 24/7 and had a stroke which affected her dominate leftside. we have 16 hours a day nursing care, which is a huge help. i enjoy all your topics, but i think that being a mom, and being needed so much, at times it feels like my life is on hold as the rest of my family heals and tries to move on with their lives, i feel stuck. i also struggle with the disappointment of an extended family that isn't very supportive of the the day to day struggle...what was/is amazing to me was that when jocy got sick the whole family got sick. the lack of counseling for all is very frustrating, and the lack of money because of having a chronically ill/special needs child is hard. you find community help at times of crisis, and now that we are in the 'routine' of her issues, everyone has gone back to their lives. thanks for the encouragement, and reminder of God's great care and provision in all things! God bless, lynette jolene,

my daughter is cancer free now, but she suffered devastating complications that has her on a vent 24/7 and had a stroke which affected her dominate leftside. we have 16 hours a day nursing care, which is a huge help. i enjoy all your topics, but i think that being a mom, and being needed so much, at times it feels like my life is on hold as the rest of my family heals and tries to move on with their lives, i feel stuck. i also struggle with the disappointment of an extended family that isn’t very supportive of the the day to day struggle…what was/is amazing to me was that when jocy got sick the whole family got sick. the lack of counseling for all is very frustrating, and the lack of money because of having a chronically ill/special needs child is hard. you find community help at times of crisis, and now that we are in the ‘routine’ of her issues, everyone has gone back to their lives.
thanks for the encouragement, and reminder of God’s great care and provision in all things!

God bless, lynette

]]> By: Jolene http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-90 Jolene Wed, 17 Feb 2010 17:35:42 +0000 http://www.differentdream.com/?p=1528#comment-90 Hi Lynette, Isn't it weird how institutional online networks work? Probably this is a good thing - maybe it keeps employees from watching You Tube on the job. I'm sorry to hear about your child's cancer diagnosis. How is treatment going? If there are topics you'd like me to tackle to help you feel even less alone, pass them along. Hi Lynette,

Isn’t it weird how institutional online networks work? Probably this is a good thing – maybe it keeps employees from watching You Tube on the job. I’m sorry to hear about your child’s cancer diagnosis. How is treatment going? If there are topics you’d like me to tackle to help you feel even less alone, pass them along.

]]> By: Jolene http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-89 Jolene Wed, 17 Feb 2010 17:30:04 +0000 http://www.differentdream.com/?p=1528#comment-89 The notebook is a wonderful idea, Cassandra. Thanks for passing it on to the rest of us. The notebook is a wonderful idea, Cassandra. Thanks for passing it on to the rest of us.

]]> By: lynette http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-88 lynette Wed, 17 Feb 2010 17:24:45 +0000 http://www.differentdream.com/?p=1528#comment-88 how frustrating, i'm at the hospital with my amazing child and the network won't let me see the video! i wanted to say what an encouragement this site is to me. i have had wonderful children and then my 'amazing' child got cancer many complications and our life changed forever. being the mom of an 'amazing' child sometimes is lonely, and exhausting and i feel a little less alone now! thanks for blessing me today-even if i can't see the video, i will see it when we get home! god bless, lynette how frustrating, i’m at the hospital with my amazing child and the network won’t let me see the video!

i wanted to say what an encouragement this site is to me. i have had wonderful children and then my ‘amazing’ child got cancer many complications and our life changed forever.

being the mom of an ‘amazing’ child sometimes is lonely, and exhausting and i feel a little less alone now!

thanks for blessing me today-even if i can’t see the video, i will see it when we get home!

god bless, lynette

]]> By: Cassandra Sines http://www.differentdream.com/2010/02/7-ways-to-advocate-for-your-child-in-the-health-care-community/comment-page-1/#comment-87 Cassandra Sines Wed, 17 Feb 2010 04:06:25 +0000 http://www.differentdream.com/?p=1528#comment-87 I have been very fortunate that we have a great team in place for our son, including the school. A couple things that I think have helped us immensely was being very open and honest with the school staff about everything. I also made an "All About Me" notebook for each of the teachers, counselors, OT and Social Worker at the school that I knew would be working with our son. I included information regarding diagnoses, medications, therapies, individuals involved in his care. It took quite a while, but very well worth it!! I have been very fortunate that we have a great team in place for our son, including the school. A couple things that I think have helped us immensely was being very open and honest with the school staff about everything. I also made an “All About Me” notebook for each of the teachers, counselors, OT and Social Worker at the school that I knew would be working with our son. I included information regarding diagnoses, medications, therapies, individuals involved in his care. It took quite a while, but very well worth it!!

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