Wednesday, October 6, 2010

All in a day's work

Well as I suspected after Monday, ,my week is turning out to be.....a handful. We had to go to Indy today for an appointment and on the way up there Sophia spit up all over herself and had her shirt drenched with smelly formula. Then as we're getting unloaded to go inside I realize Sophia has taken off her shoes and socks and one shoe is MIA. Jayden was a huge help today which made a big difference to just how bad things could have been. We then got inside and did our business and then waited and talked with the doctor for a total of 1 1/2 hours. Sophia has lost a little weight, not much, but since she is on the move now (a professional butt scooter,) she needs a few more calories. So now we have to add another feeding into the end of the day. It's only half a feed from what she normally gets, but it's still going to be a pain. Overall the visit went well and Jayden was over it and Sophia was on her last leg, she hadn't had but a 10 minute nap all day and it was about 2:30pm. We got our crap cleaned up and loaded up and head back to the car. On the way home no one slept and I noticed Sophia playing with her feeding tube and I just knew that probably was a disaster happening in the backseat, and yes it was. She had opened her medicine port and all her formula went out the port instead of in her tummy, which means again she was covered in smelly formula as well as her carseat when we got home :( Then Sophia finally broke down at 5:30 because she was EXHAUSTED. I put her down for a short nap, but couldn't risk letting her sleep to long, or it would be a LONG night for me. So I took my chances and woke her up at 6pm and that may have been a bad choice, because I paid for interupting her sleep for the next hour. She cried and screemed and was just pissed off. She finally came around and was pleasant for the last hour and now she is sleeping, like a happy baby :) I can't wait to wake up and do it all over again tomorrow! :) Anyway, I will leave you with this little fact: People with Down syndrome have feeling just like everyone else in the population. They experience the full range of emotions such as sadness, anger and happiness, just like everyone else. So NO it is not true that people with Down syndrome are always happy. I always wondered why people always told us that, because I don't see how anyone could always be happy and cheerful, it's just not realistic. And Sophia has proved this correct MANY, MANY, times :)


  1. I love all the great pics you put in your blog!!! Does Sophie just eat (?) formula, or does she eat some solid food?

  2. She is still 100% tube fed but we are trying "pleasure feeds" but she just doesn't want anything to do with food :( We are still practicing and hopefully things will start to happen sooner than later :)