Isabelle Bentley

This pudge weighs 11 lbs! They tested her thyroid - it came back normal.  We also saw the geneticist who asked some questions. I'm not really sure why we see her. LOL. Here's Izzie and her toys.  I started recreated this pic of Jack from June 10, 2014 so I figured I would continue it with her.   Cute.

Love this little outfit.  So... I'm going to be vulnerable for a minute. I think about Down Syndrome every single day, pretty much every time I look at her. And a lot of the time I can tell she has it. She has tell tale signs like upward slanted almond shaped eye and the folds behind her neck etc... But there are brief moments when I can't tell just by looking and even though I love her as is - it's kind of nice to have moments where I just see her as a baby - my daughter and not my daughter, who happens to have DS. I think this picture particularly makes her look "typical".  She weighed in at 10lbs. Different doctors' scales put her at different weights which is irritating because she was 10lbs 2oz last week. Her thyroid is doing well on the new dosage.

This peanut had 4 appointments today. Her cardiologist saw her first and put her on antibiotics for the infection. Her orthopedist looked at her right foot to triple confirm it's not clubbed foot - it's not. And he took xrays of her hips because kids with DS can have issues there. They looked great. She met with a geneticist (expert on trisomy 21) who answered some questions I had. And got her blood drawn for her thyroid. We were told they might reduce her medication because last time she had it measured, it was 1.11 (needs to be below 6.5). Well... it came back at 7.32. WTF? So her meds are being increased. That sucks. 

Snuggling on the couch after she got her blood drawn for her thyroid which is now measuring at 1.1 (needed to be above .08 and under 6.5).

We got a gift basket from a family with a child who has down's syndrome with $100 of awesome stuff in it! I will definitely be donating to it in the future to give to other families.  Izzie had 3 appointments today back to back to back. First, she saw a gastroenterologist (GI) doctor because I am fairly sure that she has reflux due to her hating being on her back after she eats and the noises she makes while eating. The gas she has is fine because it doesn't bother her. She just has it. With Jack, he used to be in pain and scrunch his little legs up. But she just has it. So that's fine. And she saw a nutritionist who is bumping her calories to 26 instead of 24 because of her slow weight gain. She's eating about 13 oz a day and getting roughly 340 calories. They want her gaining an oz a day and she's gaining less than half. UGH.  But the real kicker is... they retested her for hypothyroidism. And she has a mild case of it and are starting to give her meds fo...

Izzie and I made out way to a blood lab this morning... where it took 40 minutes to get blood from her because she bleeds so slowly. They couldn't find a vein in her arms to do so they pricked her foot and bled it. Poor thing hated it.  I finished her birth shadow box with her birth announcement. 

So I thought I had posted this somewhere on the blog but I guess I didn't. Kids with downs syndrome have a much higher chance of having hypothyroidism. Because of that, kids with DS are checked for it at birth, 6 months and 12 months. Izzie was asked to be part of a study where she got checked every 2 weeks for awhile and now every month. The purpose of the study is to see if it's better to check babies with DS more frequently to catch it sooner. All of her tests have come back normal... until today. Her tsh level is supposed to be under 6.5. Hers came back at 10. So she needs to be retested to see if it was just a fault test or if she has it. If she has it, it's just a matter of taking a pill every day for the rest of her life with no other changes but people with hypothyroidism tend to gain weight more so it's something to keep in mind and try to keep her as active as possible as she grows up. I have hypothyroidism, for example.