Sophie’s posse

Today Sophia got to sit in a cradle swing for the first time.  We’ve been considering getting one ever since we found out during reflux training that we shouldn’t use traditional swings that swing front to back.  The only ones we have been able to find, however, are made by Fisher-Price and many of the user reviews complained about them swinging too fast and their motors sparking and smoking.  So as you might expect, we have put off buying one.  Turns out the hospital has a few and hasn’t had any trouble with them, so Sophia got to try one today.  They have several different covers that they wash after each child uses them, so hopefully she won’t get any more viruses from the hospital.  She enjoyed the movement and the rainforest music– ”dancing” with her hands, feet, and tongue.  She also started petting her little stuffed friends.  One of her OT goals is developing her sensory experiences by feeling different textures and working on moving her hands toward mid-line so she can explore her hands.  


We also took our first trip to the library today–they have a little children’s library here.  The lending policy is a little unlike the ones we’re accustomed to–just take a few books, bring them back when you’re done, if the librarian is here great, if not, use the code to open the door and return them–most importantly, there was no mention of overdue fines!  Luckily, after reading her new books, Sophia doesn’t seem to believe that her Mama is a Llama.  


As far as her medical issues go, we reported during rounds that Sophia will still spit up after we give her little water on a sponge for her dry mouth.  It seems to be bile that she is spitting up (since all of her food goes directly to her small intestine).  This prompted the attending doctor to suggest that she might need a stomach emptying study–can you believe there is a study she hasn’t had yet?  Apparently, this study would not use barium and would give them a more realistic picture of how her stomach treats proteins and fats.  She’d drink milk while they watched what happened to it in her stomach and intestines.  If she indeed has a problem with emptying, this could create a real problem once she has the Nissen closing off her stomach–she won’t be able to vomit, but can’t get rid of it the other way either, which could cause a ballooning effect.  They didn’t mention any treatment for this, but would want to be aware of it. She is already taking a medicine to help her stomach empty more quickly, so I don’t know what else they would do.  Judging by her diapers, she is very capable of emptying her stomach!  Papa keeps telling her that she’ll have to choose between diapers and college at this rate (she’s apparently choosing diapers right now).  You may wonder why we’d be talking about college with her DS diagnosis, but many people with Down Syndrome do go to college.  We try not to worry to much about what the future might bring and at this stage we certainly don’t want to be limiting our expectations or her possibilities.  


As they discussed the stomach-emptying test further, they questioned whether it would be safe for her to do it with her aspiration issues.  They’ll consult the surgeon and make a recommendation, so it hasn’t been scheduled yet.  As seems to be the pattern, Sophia ended up with yet another medication after today’s rounds.  She’s now taking Nystatin to keep her from getting thrush, which is a risk from the steroid she takes with the inhaler (and because she is on two antibiotics for her possible pneumonia).  


Ever since the doctors have become concerned about aspiration, Sophia has been getting continuous feeds through her NJ tube.  It is a slow stream so that her intestines can handle it.  They can only load 3 hours worth (2 oz) into the syringe that goes on the pump.  There is inevitably a lag time during the replacement of the syringes, which was concerning to us. They calculated what she was missing for yesterday and found that with the delays she’d missed a total of 2 oz (out of the 16 she was supposed to get for the day).  This was probably why she has lost weight–so they adjusted the speed of her feedings to compensate for the lag time.  


Mid-afternoon they were announcing a severe thunderstorm warning as we were going to run to lunch.  We didn’t think much of it at the time, but when we got back, the blinds and curtains were closed and Sophia was covered in two extra blankets.  I felt like a neglectful mother–leaving her baby just as the storm was about to hit.  Turns out there was just a little rain…


As Mom was leaving tonight, we heard a little guy screaming about the nurses hurting his throat.  It made us realize how thankful we should be that Sophia won’t remember all of this, and I don’t think we have to worry about her feeling like we are abandoning her or letting hurtful things happen to her.        


Sophia had her third respiratory therapy treatment of the day tonight–she’s really getting used to it and even seems to like it.  The respiratory therapist told us that the hospital has been so busy this week because it’s transplant season (i.e. motorcycle season).  Geez!