We can't give our kids much but we can give them a WHOLE LOT of LOVE and all of the COMFORTS OF HOME!
Dylan stays at home with his family and is cared for by close family and friends 24 hours/day. At the age of 4, we finally got up the courage to implore the help of home nursing care. One reason was to provide him with the full time care he needed while chasing his baby brother around and staying awake around the clock!
We were unaware that we were eligible for nursing care so once we received information from another family in the State of Pennsylvania, we looked into the benefits of nursing. The first place we researched was the Liam Lawson Foundation for palliative care of pediatric patients. They directed us to a few nursing agencies where we struck out for pediatric care until Bayada Nurses answered our plea!
Needless to say, we were very hesitant about bringing strangers into our home, especially to care for Dylan while we were sleeping. So, we compromised...we sleep right by Dylan's side while the nurse stays awake to watch after his needs! Dylan is with a family member at all times.
For those families that cannot coordinate care for your child in quite the same manner, there are other alternatives. Visit ExceptionalCare.org to explore full time care options for your little angel.
