The Trisomy 18 Connection

Once in a while I'll get an email from a new Trisomy 18 parent wanting to connect.

They have found us through Vera's blog or through someone who knows about Vera's blog.

I'm heartened to know that this blog continues to connect us where it would be near impossible to otherwise. Hospitals are not allowed to divulge information about cases to other parents. Although I wish they would if they have expressed that they are okay with sharing and supporting other parents.

As a new Trisomy 18 parent, the first thought we had when Vera was born was: "Are there others in my situation? Parents I can learn from? Get an idea of what such a child would be like? I need an experience map!"

To Annabelle's mom, Zane's mom, Mallory Rose's mom and many others, we couldn't have done it without your guidance, back when there wasn't facebook groups.

And so I keep up the blog, hoping to pay it forward.

If you know a family with a Trisomy 18 baby, please share this blog with them.

Quattro Air for Her

Quattro Air for Her - Resmed adult full face mask

Vera needs a full face mask for her Obstructive Sleep Apnea - one that covers both her nose and mouth.

The problem is, hardly any companies manufacturer them for kids. So over the years, we have been buying adult NASAL masks to cover her nose and mouth. We've gone from nasal M to L to XL. XL being the biggest nasal mask size out there, it was a matter of time that we would have to transition Vera to adult full face masks, starting with the XS or S size.

I bought so many - but they were just too big. She was what we call "in between".

Finally, today, I brought out one of 3 full face masks I'd purchased 2 years ago, waiting for the day she can transition to them.

And the Resmed Quattro Air for Her fit perfectly! It's the XS size, thank goodness there's an XS size. Which means my years of online mask hunting, buying masks without knowing if they'll fit her - are over. From now on, it's just a matter of getting the same mask, just a size up, with just a call away from the local vendor.

I can breathe easy now.