After much online research and even some old fashioned calling around and speaking to ACTUAL people I settled on baby glasses from Tomato Glasses, I found an excellent blog post from a mother who seemed to have tried them all and settled on the design we’ve gone with so hopefully they’ll work well for Rose.
We went to quite a few appointments this week. ENT finally confirmed that Rose’s left vocal nerve is not working. It’s likely it was destroyed by the teratoma or by the surgery… whichever… it’s not there. Her right vocal fold though is moving and apparently some children compensate wonderfully. Rose’s situation is complicated by the fact she has considerable webbing on her vocal cords… this is scar tissue from intubation… it will require an operation down the track. Speaking of trachs… she’d need one as she’d have to have something between her vocal cords to stop scar tissue reforming while the site healed and she’d need a tracheostomy to maintain that.
We met with Guy Henry too who is pleased with her in terms of her Teratoma removal scar and her PEG… so we don’t need to see him again for three months.
By the way…. we came home from hospital the day after Rose was admitted. Sorry that wasn’t clear from my post and thank you for your messages xx
Rose is also swallowing a small amount of solids now.. it was a slow start as I just couldn’t find the time to coordinate everything we needed but I’ve finally managed to move her to 6 PEG feeds a day (5am, 8am, 12pm, 4pm, 8pm, 12am). The 3 hour break between feeds has made a lot more possible.
The Tomato Glasses are good! We have been really happy with them.
The talented and kind hearted, Camille Nuttall captured Rose and her glasses well enough for an ad here. Good picture of her scar too!