Isabelle Bentley

I am a little frustrated. Isabelle has not been cooperative for hearing tests so they were supposed to do one while she was under anesthesia getting her tonsils removed... but apparently they didn't. So we had another one today and SURPRISE! the two year old would not cooperate. Shocking.  Her left tube is functioning well but she does not have a tube in her right ear and the hole closed up so surprise - she also has congestion in that ear.  She hears better in her left ear and "borderline normal". She hears voices better than sounds. But ultimately, they can't make a judgement call because she wouldn't cooperate. UGH. 

Izzie had her ear tubes follow up. They checked her tubes and they look good. They did a test of them to make sure they weren't blocked by fluid or wax. They're not. They also did a few different hearing tests on her. In one, she was wiggling around too much so we need to repeat it in 3 months. In the other, we sat in a sound proof room and they played noises through speakers and talked to her through a microphone. She did not do well. At her EIT appointment yesterday they also noticed she doesn't respond to noises - she doesn't turned her head if you ring bells to one side of her, for example. However, if someone talks, she turns. However, she didn't really turn for quieter noises on her right ear. It's not definitive so we need to repeat. She's obviously not deaf but people with DS can have hearing loss so she may have slight hearing loss. Nothing I'm worried about.

Isabelle has 2 appointments today. Her ENT confirmed that she would need her tonsils and adenoids out by the time she's 2. Also, they found fluid behind both ear drums so she needs tubes placed in her ears in the next month. Basically he was like, "we're headed into winter so this is not going to get better and she will be getting ear infections". Minor surgery. Her ortho said her hips feel good and he doesn't see/feel anything wrong. However, he said her feet are extremely flexible which will cause problems when walking so when she starts to become interested in walking/standing she will need braces. Not sure for how long. 

Not impressed.  She saw her ENT for the first time. So good news, bad news. Her ear canals are wider than most kids with DS which is good. It means she is unlikely to have hearing issues and unlikely to have fluid issues or ear infections. Her tonsils and adenoids and nasal passage ways are very small though which is why she always has sounded stuffed up and always will sound stuffed. It is extremely likely that she will need to have both her tonsils and adenoids removed by her 2nd birthday. They like to do them both together around 2 but if there are issues that hurt her breathing they do one around 1 and one around 2.