Reality Check

Riley has done so well for so long that it's hard for me sometimes to think of him in any other way but normal. For the past few weeks he's been having lots of feeding issues where he is just not tolerating being fed. For these kiddos this is a huge deal because they don't have a reserve of energy in their body. We went to the GI dr. last week and he suggested to give him more time in between each feeding and lengthening the time of the feed and then what ever he doesn't get during the day give it to him through out the night. We've sort of been doing this anyway so we kind of just kept doing what we've been doing with no progress. I talked with the SMA nurse yesterday and she told me that unfortunately after time the Type one kids don't tolerate being bolus fed any more because there digestive systems slow down and they can't empty fast enough. This was kind of a flash back to when he stopped eating by mouth. One day he was eating fine and then the next day he wasn't. This is kind of the same thing one day he was tolerating his food and the next day he isn't. I just hope this isn't a precursor to more downhill slopes to come. It is starting to be a constant reminder that as Riley approaches is 2nd birthday we may be in for some more surprises.