My name is Heather.I am coming to you through a posting from Sophie's mom and I am mom to Miss Zoey.Zoey is another beautiful chromosomally enhanced little love who also traveled the Infantile Spasms road.Please know I am thinking of you and praying that this gets sorted out sooner rather then later.I am so sorry that you are running into insurance road blocks.Nothing is more frustrating and also discouraging,while caring for your medically fragile child.I will pop back and check in on your stunning Quinn and please feel free to email me if you encounter any questions that may be specific to children with Down syndrome and IS.
How incredibly frustrating! My fingers and toes are crossed for this to get straightened out quickly! I happened accross your blog through Sophie and Elaine's bog post. Your Quinn is beautiful and I truly hope that your medical road gets less bumpy soon. ((Hugs!))
I am so very sorry that this has happened. It is beyond frustrating that money matters and insurance issues can keep our kids from getting the treatment they need. Furthermore, it astounds me that my daughter's recent epilepsy surgery will probably end up costing less than the ACTH treatment your sweet Quinn is waiting on. That is criminal. Hope that didn't rub any salt in the wound. But praying for a speedy resolution and that the ACTH will work for her!
Hoping this gets sorted out soon. Is it the hospital visit or the ACTH that must be approved. If the hospital visit is approved then ask your neuro if they can contact NORD for the treatment. One more seizure is one too many.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.
I am loving mom of three children, two boys and one girl. Riley is age twelve; Aidan is eight; and Quinn is five. I have been married to my husband, Neal, for 14 years.
Down Syndrome Awareness Month Blogging Challenge - I DID IT 2009
Deep Thought by Jack Handy
“If you define cowardice as running away at the first sign of danger, screaming and tripping and begging for mercy, then yes, Mr. Brave man, I guess I'm a coward.”
That is unbelievable!!! Did they approve you for last week? How frustrating!
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My name is Heather.I am coming to you through a posting from Sophie's mom and I am mom to Miss Zoey.Zoey is another beautiful chromosomally enhanced little love who also traveled the Infantile Spasms road.Please know I am thinking of you and praying that this gets sorted out sooner rather then later.I am so sorry that you are running into insurance road blocks.Nothing is more frustrating and also discouraging,while caring for your medically fragile child.I will pop back and check in on your stunning Quinn and please feel free to email me if you encounter any questions that may be specific to children with Down syndrome and IS.
ReplyDeleteHow incredibly frustrating! My fingers and toes are crossed for this to get straightened out quickly! I happened accross your blog through Sophie and Elaine's bog post. Your Quinn is beautiful and I truly hope that your medical road gets less bumpy soon. ((Hugs!))
ReplyDeleteI am so very sorry that this has happened. It is beyond frustrating that money matters and insurance issues can keep our kids from getting the treatment they need. Furthermore, it astounds me that my daughter's recent epilepsy surgery will probably end up costing less than the ACTH treatment your sweet Quinn is waiting on. That is criminal. Hope that didn't rub any salt in the wound. But praying for a speedy resolution and that the ACTH will work for her!
ReplyDeleteWell, that really sucks. As if you needed more stress. Big hugs!
ReplyDeleteSent over from Sophie's blog. Praying that the insurance issue is worked out very soon and that the ACTH will actually work for her!!!!
ReplyDeleteHoping this gets sorted out soon. Is it the hospital visit or the ACTH that must be approved. If the hospital visit is approved then ask your neuro if they can contact NORD for the treatment. One more seizure is one too many.
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