still waiting…

We had our first doctor-free week (week #6 at home)!  Home health did come by to weigh Sophia (she was still at 9 pounds, 7 1/2 ounces on Tuesday) and check her vitals.  We expect to have a GI visit this week, though, because she continues to gag and cough at the beginning of feeds and now seems to have developed an aversion to eating (biting on the nipple for Papa and crying for me, both with the bottle and with her tube).  This was what we were really hoping to avoid.  The only thing I’ve found that calms her for a little bit is singing her a new song; she’ll just stare at me and forget about her pain.  If anyone has a favorite kids song, please send it our way.  My repertoire of kids/lullaby/folk/camp songs is about exhausted.

 

It also seems that Sophia is managing to spit up again despite the Nissen (although not nearly as much as before).  GI should be able to check on whether the Nissen is too tight (keeping her milk in her esophagus) or too loose (allowing it to come back up again).  Unfortunately, it seems like the latter is more likely (and there doesn’t seem to be any way to address that).  We think that she retains milk in her esophagus because she has low muscle tone inside as well as out.  She’ll probably have to just get bigger and stronger to outgrow that.  Hopefully, GI will have some way to address it in the meantime.  We are still waiting to hear from the cardiologist and will probably check in with her soon to see what was decided in conference about open-heart surgery.  

 

We seem to be getting closer to having a plan with the school district, although we are still negotiating some of the contract language.  Sophia now officially has an attorney of her own to help us figure this out–pretty good for a 16-week old kid!   I realized tonight that she has already accomplished one of her proposed goals:  turning her head toward a loud noise.  She cranked her neck to look when she heard Papa belch!  I’m not sure why the cute toys the therapists brings don’t have the same effect, but, I guess she is just more interested in her Papa.  

 

Perhaps it is this same focus on Papa that keeps her from napping during the day and then sleeping most of the time I’m home during the week!  We continue to try to let her develop a schedule, but like the book says, “you can’t make a baby sleep.”

 

We finally got around to purchasing a Boppy for Sophia to sit in, and she really seems to like it.  It is good for her since it keeps her arms midline while she is face up and she can use her arms more easily to bat at toys in her little gym, etc.  She is also able to use it for some tummy time.  We still need to figure some way for her to be able to scoot on her tummy with the MIC-KEY, so it doesn’t cause her any discomfort or get dislodged.  We’ve also tried various ways to keep her head above her stomach while on tummy time, but that is also proving to be difficult.  (We really are not supposed to let her lie flat, because of her acid reflux and coughing issues).  

 

Sophia also had fun this week meeting some new people.  Since I couldn’t bring her to our family reunion last Sunday, several of her relatives visited her at home.  She was able to be held by Oyen cousins from Portland, Korea, and Phoenix.

 

Grandma was thrilled that when she told Sophia how much she loved her, Sophie gave her a big smile.  Grandma also reports that there is another air advisory all week, so I guess Sophia is staying in.  Mukwa will enjoy getting solo walks.