good news! (maybe)

We apologize for the derth of regular updates lately. Since there really isn’t much exciting going on day to day, we have decided that from now on we will update the blog each Monday (although photos will continue being updated erratically). This will allow us time to write on the weekend and give you something to look forward to on Monday mornings.


Sophia had an appointment with her cardiologist on Monday afternoon, and we were given some very good news, although we will of course have to wait and see. Sophia’s VSD has gotten smaller, which means there is less shunting between her ventricles and that the pressure balance is more normalized… So basically if her heart continues along this trend, there is a chance that she may not require surgery (yeah!). Although, the cardiologist isn’t sure what to do because if she needs surgery, they should do it soon, given Sophia’s risk of developing pulmonary artery hypertension.  Kids with Down Syndrome can develop this thickening of the pulmonary arteries as early as 5 months, and it is irreversible.  But, since Sophia is quite a bit shy of the 20-pound ideal for surgery, any additional time would make it less risky.  


She also told us that the aortic coarctation Sophia already had repaired is so unusual for kids with DS that it was “reportable.”  Her ASD and VSD are also unusual because they don’t actually create the classic A-V canal that is common with kids with DS.    


We also went to Sophia’s first PT outpatient session, at which she was given yet another test.  Before our appointment, we spoke briefly with Sophia’s Speech Therapist to get his advice about Sophia’s coughing and gagging, which has been getting increasing in frequency and severity.  He scheduled a swallow study for Friday to try to diagnose what is causing all of this and come up with a remedy. The study revealed that a combination of Sophia’s low muscle tone and the Nissen has reduced Sophia’s motility, which is resulting in milk and secretions building up in her esophagus.  So, Sophia is back on Reglan (a motility drug) again to see if that can get things moving.  


Sophia weighed in at 9 pounds, 7 1/2 ounces on Friday; she’s been gaining steadily, close to the ounce a day marker.  Someday, she’ll be moving out of newborn clothes, but we really don’t mind her being so wee.


Sophia made her first trip to the public library on Thursday.  I don’t think she signed up for a library card or the summer reading program though.  Baby steps!


Replacing the g-tube that Sophia had with a MIC-KEY wasn’t as traumatic as we were expecting. Just a quick yank and the old one was out, although there was a little splatter.  Unfortunately for Papa some partially digested breast milk hit him square in the mouth.  


Getting used to the MIC-KEY is presenting its own challenges.  It is bigger than we were expecting so Sophia may not be able to scoot around on the floor as much as she should, which we fear may delay her crawling. It, also, doesn’t seem to vent as well or as easily as the previous contraption, which has resulted in more gas pain and bouts of crying.  However, Sophia no longer has plumbing sticking out through her clothes when she isn’t eating.  But the best part is that she had her first immersion bath in a couple of months, which she really enjoys.  My favorite part is bundling her up in the towel afterwards and having a good long cuddle.