Oliver is having a tough day with crankiness, and his tube is a little leaky. He's having a restless nap right now. We were able to finally get casts of his lower legs/feet to make his braces. The braces will stop some of the flexion in his feet and hopefully help with the spasticity in his calves which would make him more comfortable.




While meeting with hospice yesterday was difficult beyond words, we knew we needed to have a plan in place for Oliver's care. Hospice is typically provided for 6 months, but in the case of a pediatric terminal illness it works a little bit differently. Hospice care can go much longer than the 6 months and we fully intend for it to. Oliver is medically stable at the moment but with MLD things can turn rather quickly, and with "cold season" around the corner we needed to make sure we had everything in place to keep Oliver as healthy and comfortable as possible. A cold can turn into pneumonia easily with a child with MLD. The word hospice" takes a huge emotional toll on us but now it will allow us to leave the house with a health aide, and also get immediate access to medicines if he needs something to make him more comfortable. The Dr. and/or nurses will also come to our house if he gets a cold, or needs a check up, so we won't have to drive all the way to Hartford. And while all of these are good things, and big reasons we agreed to sign up with the palliative/hospice care team, the word "hospice" and "child" should never be part of the same sentence.
Oh he just woke up from his nap...