Monday, October 13, 2008

1/2 Smiles :)

Charlie definitely isn't looking his photographic best these days due to the steroid chubby cheeks and the facial rash and the wandering right eye. However, I had to share the "pleasant expression" that we started seeing yesterday. It's hard to call it a smile because it isn't one yet. The corners of his mouth moved back slightly but do not turn up. My mom was the first to provoke it Sunday afternoon with some "coochie, coochie, coos"- then I was able to get the same reaction last night with some "ahhhhhhh- boo's!" Now remember he is deaf (cochlear implant will be reprogrammed at the end of the month) so it is all about the exaggerated facial expressions not the words. SO what's the big deal you say....he has smiled in his sleep a few times before (really cute, mouth turned up smiles). Well... the big deal is that he reacted positively to something WE did. Up until now we have rated his mood by the absence of things like whining or stiffness. Although sporadic, it's very exciting- maybe all the binky sucking has given his mouth muscles a workout.

Sunday, October 12, 2008

Sunday Afternoon

About 3 weeks ago Charlie started getting a rash. First just a few pimple looking bumps on his chin. Then it spread to each side of his nostrils and a couple days later to under his eyebrows. Every few days it seemed to have spread just a little- inside his ears, on his forehead. It is only on his face and only in certain parts of the face but it is taking all of Rob's will power not to pop them. (It's a strange Christensen tradition to pop each others zits at family gatherings. Some actually refrain from popping them themselves to have their siblings do it at Sunday dinner.) Our pediatrician was not nervous about the rash because Coop seemed to be fine otherwise but then his blood pressure started to go up as well so I called the neurologist as instructed. He was concerned about the BP and thought the rash could be from the ACTH (seizure shots) as well. The rash he said should go away when we are done with the shots but the blood pressure is concerning so he asked us to get a manual blood pressure as the automated machines tend to run a little high. After a failed attempt at Instacare we went to PCMC and it was in fact high so we are weening quicker than originally planned hoping the BP will come down and that the seizures will not return.

He has been doing a little better in therapy. He seems to tolerate bearing weight in his arms and shoulders better than before and he is alert a lot more often. He is only taking one nap a day and the rest of the time is softly moaning. He is now moving his arms up to his face by himself and can sometimes hold his binky in if he hits it just right. (not on purpose yet). He has had a cold for a couple weeks and is having trouble getting rid of it completely due to his decreased immune system so we haven't been feeding him much baby food as he is coughing more. He is liking his binky a lot and kept in in himself for 3 hours on Sunday. This is a new trick for him and we are pretty proud.