Kaitlyn had another neurology clinic today. We see our neurologist once every three to six months. He seems impressed with how Kaitlyn is doing. She hasn't yet any noticeable curve in her spine. This is something that my husband and I are pretty careful about when we position Kaitlyn. He also asked us this trip how we would approach newly diagnosed families with SMA children. We were honored to have been asked this, because when we found out about Kaitlyn's diagnosis we were not given any options or any information about choices we could make to help improve Kaitlyn's quality of life. We gave our Neurologist Kaitlyn's care protocol which included her entire daily routine, respiratory therapies, equipment she uses, positioning techniques, diet information, etc. Kaitlyn is the oldest SMA Type 1 that our Neurologist has ever seen. Basically, we just said that we would be happy to speak to any newly diagnosed families and that they should be given options. My husband and I know first hand that the path we chose for Kaitlyn is not for everybody, but we do feel that parents should be fully aware of all the paths that may be taken so that they can make informed decisions about the type of care their child should be provided.
We can honestly say that every aspect of Kaitlyn's care was researched by my husband and myself, and we were given no advice, information or options as to how we could approach our daughters condition. It makes me mad when doctors don't research what is currently being done for a particular disease and give families some options based on their findings. It is left to the parents to help their children survive and thrive.
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