Leveling Out

Since Tuesday night, Ian has leveled out, Tuesday evening around 6:00, we were able get Ian off of the oxygen. He has not had to go back on since then, had a few good nights sleep as well as gone to school Wednesday and this morning. We are hoping last weekend and the beginning of the week were just bumps in the road but we are fully expecting to have more bumps in the road as we continue to navigate VRK1. At some point in time adjustments to Ian's vent settings may need to take place as well as he may need oxygen more often then not and this can happen at any point and time. But for now we will continue to take what we can get...

The new pain medicine Ian is on has been making a difference in how he is feeling, in fact I spoke with his Gilchrist nurse earlier today and Ian told her yesterday that he was not in any pain as well as one of his day shift nurses said that there is a big improvement in how many times Ian needs to be readjusted. Again, we know that over time the pain medicine may not work as well as it is, but we will continue to take what we can get...

Both kids brought home wonderful 3rd quarter report cards....so proud of both of them and all the hard work they do at school along with all the other challenges we have which are not a part of other pre-teens lives....

Continue to treasure yesterday, dream of tomorrow but live for today.