2014 Year end update

Lucas update late 2014

In May 2014 Lucas had a painful incident with fever. He went to the ER at Saratoga Hospital and discovered his right hip was not permanently dislocated. (For about 1 yr prior it chronically popped out and back in with no apparent discomfort for him).

In June or July hip and spine surgery were discussed with Dr. Karl at Albany Med but he was inclined against.

In September a sine surgeon at Albany Med was more aggressive in recommending both surgeries but later backed off those recommendations. Perhaps after hearing Lucas was in no (noticeable) pain and his life expectancy was short.

In November we saw Dr. Shure at Boston Children’s for a third opinion.  We are still awaiting consults from his colleagues in Spine and Nuero.

September was also the start of kindergarten at Gordon Creek with a longer school day. Also the short bus ride meant Lucas no longer napped on the ride home. Possibly as a result each night at about 6:20 he’d grow irritable and 6:30 became his more routine bedtime, where as 7pm had  been his bedtime til now.

Also in September we noticed a consistent pattern of difficulty pooping. He tended to be constipated and struggling for 2 days and then the flood gates opened sometimes with diarrhea for 1-2 days and then back to constipation and it repeats like that.  We introduced a little apple juice to his daily routine and that seems to minimize the constipation.  It’s only a guess but Doctors and nurses support my suspicion that his severe spine curvature is compacting the space for his bowels.  If not that, or maybe in addition to that, he may be losing some abdominal muscle strength.

Outside of the above he had a very happy year, with more smiles and laughs than any other mood.

Although in December he was sent home from school the Friday before Christmas with a slight fever and just general discomfort. Over the next days and weeks we saw minor cold symptoms and some digestive trouble.  He wouldn’t tolerate his full feeds for a few days.  It wasn’t until Jan. 4th that he snapped back to his smiley self.