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Sophia had a really good day today. She was taken off of droplet precautions, which means we get to see peoples faces again!  Since her fever is gone and she’s feeling better she is engaging more with toys and activities.  She rolled onto her side all on her own while we were meeting with the person from the school district’s 0-3 early childhood special education program.  We will have an IFSP (individual family services plan) to coordinate the various assistance she’ll need to promote her development.  She’ll have in-home services until she’s 3–it sounds like it might be just once a month, but that will be determined at the meeting.  

 

OT suggested that she could use a tumble form chair to start working on sitting up with support.  It can lean back as much as she needs it to to be comfortable.  Her PT person actually found one and brought it in, so we’ve had some fun giving her a different view of the hospital room (which is getting smaller every day).  

 

Also, Sophia’s neurologist came by and indicated that this silent aspiration was a common problem for children with Down Syndrome. After stopping by initially for the update, he came back and said “like you lawyers do, I did my research.”  He’s been very funny about me being an attorney.  It first came up when his resident was doing the initial neurological exam–and asked a bunch of seemingly irrelevant questions, including Sophia’s parents’ occupations.  That was the only time I ever mentioned being an attorney, but after that it became a topic of conversation with several doctors–most especially this neurologist.  It’s funny the impact that has on people.  In any case, he is a pretty irreverent man, wearing a tie today that had the Tasmanian Devil coming out of a smiley face (which he received from a 13-year-old patient).  He usually shows off for his students, but today didn’t have any with him, so was a little tamer.  Early in our stay here, we saw an article in the newspaper highlighting his great work finding a new treatment for a rare childhood disease.  

 

On the GI front, they seem happy that she seems to have recovered from this virus, and seem ready to schedule surgery.  It sounds like Dr. Foker is on vacation though, so it won’t be until next week.  

 

The discharge nurse is starting to get us set up with training and support for feeding Sophia through the G-tube.  She seemed surprised that we would continue to feed her breast milk, but that is our plan right now.  

 

Well, I’m off to Ben & Jerry’s to make sure Sophia can gain some weight… (she’s up to 7 pounds, 11 ounces–or 3.54 KGs as they say here).)  This is 1 pound heavier than birth–much less than she should  have gained, but it is progress.