Isabelle Bentley

Isabelle is now a full, real walker. She's been doing laps around the kitchen and up and down the hallway all by herself. She has begun to say two word phrases. So far only " hi dada" and when she plays with her dolls - she puts it in the crib with a blanket over it and says "nuh night baby" - but still. She has memorized books and begun to fill in missing words. She sings entire songs to herself (although most words are gibberish, the cadence is the same). She's begun to memorize the alphabet song and can fill in letters when you stop. She follows commands really well. She's started to give hugs and kisses. Several times she's picked up a wrapper on the ground and walked it to the trash can, opened the door, and put it in all by herself. And you would never even know she had tonsils & adenoids removed this week. She hasn't really cried. She's been eating and drinking everything as normal. This kid is a tro

Scott stayed overnight with Izzie. She was struggling with being on room air so they threw a nasal cannula in. She got down to 74 without it. You want to be at 96 or above.  She got a bath this morning. She ate cheerios and yogurt but didn't want to drink anything really. Her oxygen levels were up to 99. Should be going home soon.  She is in a good mood and playing. Doesn't appear to be in too much pain.  She decided she REALLY wanted to feed herself and would not let me feed her.  We were released round noon to go home. 

Take 2.  Isabelle had her tonsils & adenoids out and a second set of ear tubes placed this morning. She was in a great mood, a little runny nose and they said a little wheezy. But I told them that this is her always - it's just how she is/sounds. So they decided to do it. She was in a great mood and playing and moving all over the place.  They gave her versid to go to sleep which quickly made her sleepy.  The surgery only took a little longer because they had trouble finding a vein but other than that it went well. She had a lot of fluid behind her left ear so he drained it and put in a new tube but the right ear had a big enough hole (left in it from the previous tube) that he didn't need to put a tube in. He may need to in the future but it's better to assume it'll stay open.  She spent 6 HOURS in the recovery room because her oxygen level (SATs) was low. It was 56 when she first came off the breathing tube. Most adults are around 96 and she's n

Isabelle's ear tube surgery got canceled today due to congestion Reschedule tonsils, adenoids and tubes for February 20. 

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.