Wednesday, April 29, 2009


Last night Chloe drank, from her cup, 100ml of thickened liquid!!!! That's a little over 3 ounces! That's the most she's EVER taken by mouth. Soooo exciting!!!!!! She weighed in a 15lbs 4oz at the doctor yesterday and jumped on her growth curve so I'm officially given permission to drop down on the tube feeds and let her eat more during the day by mouth!!! Whooo hoooo!

She also had a good check-up at the cardiologist on Monday. An echo and EKG showed that her little heart is working just fine. They went up on her Captopril (blood pressure medication) because she had "moderate regurg", but with no dilation of the left ventricle (in other words - it's all good) and her pressure was on the higher side and she's getting bigger and they won't see her for another 6 months so they have room to go up on her meds. All good news. I'm not sure how long she'll be on the Captopril. I guess we'll give it another 6 months, see where she is and ask then.

The cold is better too. Still has a mild cough with the occasional gagging but NOTHING like before. We're through the worst of it and I can breath a deep sigh of relief!!!!!


  1. Yeah, thats so great. Isn't it nice to have good news once and a while?

  2. Don't you know it! She's been very low in endurance today. I hope it's just because she hasn't felt well for so long and not that there's still something going on! She's happy, so hopefully she needs to play some catch up.

  3. GREAT JOB CHLOE!! You are doing such a great job with her Amy...keep up the great work;)

    Sending you both a great big hug:)
    Love & miss you both

  4. Im new to your blog and think Chloe is the cutest. My son (who also have DS) has to eat/drink thickened liquid. He asperates when he eats. We are having a VERY hard time getting him to open his mouth for a spoon, got any ideas?

  5. Wow, what amazing people you are. Malachi is one lucky boy! (I visited your blog! ;) Anyway, I wish I had a magic answer to the feeding. We went to a feeding specialist and she has us doing all these pre-feeding exercises with her before she eats. But she would prefer to drink from a cup then eat from the spoon. Maybe ask around to see if there are any feeding specialists in your area. It's really worth the investment.