Isabelle Bentley

Izzie got her 3rd set of ear tubes!

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.

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. 

She had her follow up hearing appointment and pass with flying colors. She can even hear whispers.  Kids with down's syndrome are prone to hearing loss for a variety of reason (most of the time it's temporary) so they will keep monitoring just in case.  She had to not eat or sleep for 2 hours before he test so that she'd sleep through it and it took 90 minutes. 

Jack & Izzie riding in the car together for the first time.  Izzie is the 2nd patient ever at the brand spanking new down syndrome clinic at UMass. It was their first day ever open. Wow. We found out she definitively does not have a clubbed foot. She just holds it weird. We need to stretch it out every day but d not need to cast it every week nor need braces. THANK GOD! And this is her at her 1st ever doctor appointment. She is back up to her birth weight. And her ear canals are big enough that the dr could see her eardrums. Lots of kids with down syndrome have hearing issues because their canals are too small. Her dr said she's very active - more active than most newborns. There is still a grade 2 bleed in her brain but it should go away soon. On a wicked annoying note - my csection wound half opened yesterday at the hospital because one of the stitches was stuck. So now every day for the next 6 weeks a visiting nurse has to come pack the w...

Baby burrito. My mom came to visit.  Eyes open! Her prints. For visitor's we had grandpa Bentley, Jesse, Steve, Amber, Amanda, Sue & Don.  Medically, Izzie passed her hearing test in both ears. All the NICU docs think she does not have a clubbed foot but some orthopedic residents came by to see her and think she may have a mild case of it. So she needs to see the ortho surgeon to be sure. Finally, she had a brain scan this morning and preliminary results came back that she may have a mild case of ventriculomegaly which is why I had an MRI this summer. We will have more results as to what this might mean tomorrow but the docs were not worried.