December 20, 2011

SD has had a growing concern about his port and stitch (he has a single rather large external stitch that should eventually fall out on its own). SD can't see them very well, but he kept feeling around them and crying. Stephen brought him a mirror this morning, intending to show them to SD and talk about them; but SD started screaming and buried his head in the couch, refusing to look into the mirror.

By the time SD gets his port taken out, he will have had it in most of his life. There's a pretty good chance he won't remember not having it. Hopefully getting it removed won't be as big of an adjustment.

Today was a trying day in general. SD refused to eat anything but toast, some french toast, chicken nuggets, and of course string cheese. He continuously complained about being hungry. He spent most of the day crying or whining, but it's not clear whether he was in pain or just anxious.

We made SD walk (with assistance) a little (about 6 feet) after dinner. He screamed the whole time and cried for quite a while afterwards. His meds cause muscle weakness, nausea, dizziness, bone aches (including slight osteoporosis), and numb/tingling feet. We're not sure which of these bother him the most, but we have to make him walk to keep up his strength.

SD has only wanted to watch two movies the last few days. When one is done, then the other one must go on. When the second one is done, he only wants to watch the first one again. The two movies of choice are 101 Dalmations and The Happiest Millionaire - or, as SD calls them, "dog" and "arrgh" (the sound an alligator makes).

Recently we have noticed again how SD is regressing in his speaking. SD's vocabulary this month is a lot smaller than it was before. More than once he's had to pause and strain to remember a word. When he does speak, it's usually single words (no phrases). He is also lazy in his vocalization. This increases the difficulty of communication.

There are only three things that make him excited: cheese (of course), ranch (of course), and snow. We're not sure if SD remembers snow from last year, but he sure likes it now!

We don't have any pictures or movies from today (it would just be crying or screaming anyway). So here's a video from Sunday, when SD wanted to help Mandy vacuum! Normally he is scared of it, and Mandy will vacuum while Stephen distracts SD in another room.