Autumn D.

Ohio

Birth Date - November 10, 2000

Main Diagnosis -  Lennox-gastaut syndrome

THEME:   Cherished Teddies

Autumn's Story

Autumn was a normal, fully developed baby at birth. Shortly after her 2nd set of immunizations she started having seizures. A neurologist confirmed what we expected were seizures. She was diagnosed with Infantile spasms. We found than that she was allergic to the pertussis immunization. She ended up with other problems. It was found she was developly delayed, and had a swallowing dysfunction. Her life expectancy was age 5.

At the age of 5 Autumn went into a seizure coma and we almost lost her. The doctors told us to prepare ourselves. 72 hours later she pulled out of it. She has had uncontrollable or intractable seizures ever since. Shes been on a million different medications that will only work so long, then the horrible seizures start acting up again. In February 2012 Autumn was admitted to the hospital ... that time for 30 days. Nothing was working. The social worker from the hospital came in and was giving us options. We signed a DNR order for Autumn. We were hit with the words "palliative care" ... which was a step up from hospice. They placed Autumn on hospice care. At the end of the 30th day in the hospital she was transferred to a hospice facility where we stayed an additional month. Finally the seizures were under control enough that we could bring our precious daughter back home. The meds worked for awhile than the seizures were hitting horribly again. Many times she had regressed and lost her ability to walk. She was in and out of the hospice facility. Finally once again they added another medication and it worked great. She learned how to walk again etc.

Which brings us until now ... Autumn's seizures have hit hard again. She has regressed again and is not able to walk. Autumn is either in the wheelchair or I carry her everywhere. Autumn is not able to sit up on her own. The doctors upped her meds and changed her emergency meds and nothing is working. On July 29th she is going to have a MRI/ petscan. We are going to see if their is a focal point and decide whether or not brain surgery is an option. Its a long scary road. They wanted us to put her in the hospice facility once again. As for now we declined that and have decided if this is going to be the end for her that we will be keeping her comfortable at home ... comfort care status ... doped up and keeping her that way until the testing is done and we will go from there. As a mother I am completely devastated.

"Thank You"

Thank you so much for the quilt as Autumn has already become very attached to it, and we don't know how much more time we have with our precious daughter. Thank you for the quilt once again. God Bless!