We did not do anything for this new year eve, but we watched the ball drop in Time Square, it reminded us of the craziness. Annett and I were there a few years back and it is definitely something to do once in a lifetime, but it is pretty crazy!
2011 has not been a good year for us, it started with Jagger heart condition, then we finish the year finding out about his terminal mitochondrial disease and 3 weeks in the hospital. So we really hope 2012 will be better and while we are trying to stay optimistic, we also know it is a progressive disease so the odds are that 2012 will be worst than 2011, but we never know, maybe the disease can plateau for a while, that would be great!
I am not going to make any resolutions I cannot keep for 2012, so I will only make 2. First one is to take care of Jagger the best we can, and minimize his pain as much as possible and the second is to raise awareness for Mitochondrial diseases as much as I can. So few people are aware of those devastating diseases that I believe the least I can do is to try to reach out to all my friend/social networks and talk about Mito as much as I can.
So raising a kid is exhausting and very expensive but I think most parents do not have any ideas how much more difficult and expensive it is to raise a special needs child, so here are some mind blowing numbers about Jagger in 2011:
- Doctor, Therapist visits: 59
- Surgeries: 2 (muscle Biospsy, ST and feeding tube placement, second one was port placement in chest)
- MRI: 2
- EEG: 1
- Trips to ER: 5
- Hospital Admission: 5
- Days in the hospital: 38 (including 8 in ICU)
- Miles driven to appointments or visits: 1950
- Medical costs for 20122: $236,000. We are very luck that we have insurance and only had to pay a portion of that, but it was still a very expensive year medically for us. I do wonder how families without insurance do it!
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