Isabelle Bentley

Scott and I got the down syndrome tattoo that many parents are getting across the world called "the lucky few". It's 3 arrows to represent the 3 copies of the 21st chromosome. It also is in arrow form to represent that you sometimes need to be pulled back before you can go forward. We went with a group of about 12 people which is the last part of the tattoo - parents of kids with DS are a tribe. 

Look who the mdsc made their banner of their facebook page in support of Scott raising money for the hockey game !

Dad is a rock star and staying at the hospital with Isabelle while I go to work and take care of Jackson. Huge thanks to my mom who also is taking care of Jackson. They pulled out her breathing tube and she's awake - one day early!

We went to a tulip farm in Rhode Island as a nice little family day.  Interestingly there is a connect of tulips/Holland to Down syndrome.

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. 

The annual Massachusetts Down Syndrome Congress Conference was today.  Scott & I attended sessions on being a new parents of a child with DS, floor time activities and occupational therapy (ways to help her with things like brushing her teeth, getting dressed etc...). We met the keynote speaker - Tim Harris - who is the only person with down syndrome to own a restaurant in the country. He also was our friend, Kim's, homecoming king (she was queen).  So I chatted with him about her. Her onesie says "my extra chromosome makes me sparkle".