We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.
Saturday, March 17, 2012
Fortunately, this past week's hectic schedule full of doctor's appointments actually turned out to be a good thing, because we have begun discussions about interventions and are working on a care plan that will hopefully allow Jacob to get proper nutrition and regain his energy.
|So tired he fell asleep on the exam table|
Regional Center - We had Jacob's 6-month eval to determine his continued eligibility for services. Currently, the Regional Center provides Jacob with occupational therapy twice a week and monthly visits with a physical therapist in our home. Given his condition, he is now eligible for "status 2" services and the Waiver program. This means he will continue getting his therapy, but he will also be eligible for supplemental insurance to help augment any care or equipment that our insurance might not cover. Additionally, Jake is now eligible to receive respite care that will allow us (if/when needed) to have someone come to our home to help care for him up to 25 hours a month. There is also an option for nursing respite, which would include a trained nurse being able to come to our home. This would be particularly helpful with medication administration, monitoring and care for things like a G-tube. We haven't really considered if/how we would use this service, but it's good to know that we have the option available to us. Josh and I both feel very strongly that we want to be the ones to provide Jacob's care, but are relieved to know that we have extra support as needed so that we can also continue to work.
It was a bit overwhelming to digest this all in one-week, but we know in our hearts that we are now on a path to pursuing a care plan that will provide Jacob with the support he needs, as well as restore some sense of normalcy back into our lives. These are some big changes that we are considering, but we are learning to embrace the change and do whatever is necessary to improve Jacob's health.
|Appropriate for St. Patty's - Jake's sticker from his doctor's appointment|