Evie’s First Sign!

We've been working more diligently on sign language with Evie since we found out she will not be able to use a speaking valve and though we've suspected that she's done a few signs (more and milk), it's been hard to tell if she's been doing them deliberately or simply mimicking. Today she very clearly …

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Ear Tubes Replaced

Evie's ear drums actually looked pretty good, but the ENT went ahead and popped in new ear tubes so hopefully that makes a difference for her. He scoped her airway and we asked if he could try to take some pictures for us. Here's a picture looking down into her trachea. The hole is what …

In Surgery

They just took her back. We had a laugh with her ENT about how this is one of his and Evie's anniversaries: exactly one year ago he was doing her tracheotomy.

Surgery Tomorrow!

Tomorrow morning Evie will be getting her third set of ear tubes along with a scope of her nose and airway to see where she's at there. After that, they will keep her under anesthesia and do another BAER hearing test to see if the fluid levels were influencing the test before. Evie is currently …

The Least of These

Since Evie joined our family we've joined this amazing world of special needs families that we never really knew existed. We've learned about all sorts of syndromes and diseases and met many wonderful people in this journey. We've also been introduced to the advocacy required with a child with special needs. When we were on …

Two Things

1) Evie's surgery for her third set of ear tubes is scheduled for the 14th. They originally were going to do it the 21st, but with how much her ear was bleeding over the weekend, we were able to bump it up by a week. 2) Evie was able to get into the trial program …

Not Good, But Not Surprising

Well, we met with Evie's ENT on Thursday to discuss a few things, but mainly to address the possibility of reevaluating the timeline for starting her surgeries. Our ENT did a great job of explaining why we need to wait. Opening up her nose is really something that could be done whenever, but the main …