who’s that pullin’ my hair?

Sophia started pulling her own hair this week (although we’re convinced that she thinks it is someone else doing it).  She’d grab a chunk on each side and then scream really loudly.  Since she has so much hair to pull, she really gets a handful and can’t seem to figure out how to let go.

 

We spent most of the week going back and forth with GI trying to figure out why she’s crying when she eat, still coughing so much, and getting gassier since the MIC-KEY.  She had another upper GI study on Friday which seemed to show that in that moment in time, her Nissen was neither too loose nor too tight.  She had only a small amount of reflux that went right back in.  The barium that she drank also went down like it should.  It was good news that there wasn’t a serious problem, but we were also really hopeful we’d get some answers (and didn’t).  

 

GI also switched her from Zantac to Prevasid, so I guess we’ll see if that helps at all.  It is another pill that has to be split and dissolved and then administered by syringe, so that gets tricky to get her her full dose.  

 

The last thing they are having us try is putting her on continuous feeds for 16 hours a day.   She basically gets milk pumped into her stomach all day at the rate of 1 1/2 ounces per hour.  It doesn’t keep her from coughing, so I don’t think we’ll have to stay on it, but they are trying to narrow down the possible issues.  Even though the pump is small it makes it complicated to carry her around, but she is able to sleep better because we don’t have to wake her to eat.  And after the day she had Friday she really needed her sleep.  She couldn’t eat for 6 hours because of the upper GI test, and during the test she had to drink barium and lay on a table with her arms up while they X-rayed her.  After that she had to get back in the car seat for a traumatic trip to the pediatrician.  She finished off the night with a case of constipation that was so painful she screamed the loudest she’d ever screamed.  From being in the hospital, I knew she should get pear juice, but wasn’t sure how much she should have given her restricted fluids.  The nurse who answered the nurse line once again didn’t want to talk to me and had the on-call doctor call us back.  Luckily, her pediatrician that runs the Down Syndrome Clinic was on call, so knew Sophia’s background and advised us to give her an ounce at night and in the morning.  By the time I got home, Papa had actually calmed her down already (so I didn’t have to hear the horrible screams) and by mid-morning Saturday, the pear juice had done its thing.  Like the doctor said, barium can act like concrete in a baby’s system.  She’d never had trouble before with her other tests, but this one sure made her uncomfortable.

 

Sophia crossed over the 10 pound mark at her weigh-in on Friday.  She is gaining an average of 2/3 ounce/day, which is great!  Her pediatrician thinks it is most likely the result of her heart doing better.  He’ll see if he can find out what her cardiologist is thinking.  Its nice that they are all in the same system, so all of her records are right there when we go to each of these various doctors.  He also commented that with all of her complications, the most serious are the weight gain and heart condition, and if those are under control, we can probably live with the coughing and the reflux since she’ll grow out of those (even faster the more quickly she grows).  We hate to see her uncomfortable, but if it isn’t anything more serious, we can hold our breath until she gets bigger.  Sophia goes back in in two weeks for her 4 month check up and immunizations.  

 

We finalized our plan with the school district this week and will have speech and OT coming out next week.  Both of them have a great deal of expertise in feeding, so we are really looking forward to seeing if they have any advice for us about these issues.  We’ve been able to get around Sophia’s resistance to eating by letting her play a little and then swaddling her (speech says it makes her more “organized”–able to concentrate on eating and not on her other muscles), but she is still resistant in the beginning.  

 

Tonight we went out for dinner and to see a play (our first real outing since Sophia entered our lives) and left Sophia at home with her Grandma and our friend OrLou.  We had a little birthday cake for Grandma before she left.  Sophia was sleepy soundly when we got back, but apparently had some air in her tummy during the evening–maybe from all the chatting she was doing?