Stinkerface!

Granny Janny caught this funny moment on tape a week or so ago. Ellis is allowed to play with the faucet as long as someone is with her. I am usually the one who comes in after a while and makes her do something less entertaining, like going home or sitting still for an hour to have a feed. When she heard me talking in the next room, she conceived of a way to prolong the fun. Stinkerface!

The sign there at the end means "What happened?" or "I don't know."  Double Stinkerface!

Our daily trials with the Passy-Muir valve have been challenging this week. There are some days she handles it well and others that end in angry spit-ups and tears. I feel so mean scaring her this way, because for those few seconds she feels like she can't breathe. But in the good moments she will take a deep breath in and make a sound out of her mouth. These are encouraging small steps, even though she can still only tolerate wearing it for around 30 seconds. We will keep going, however, in the hopes that she will soon tolerate it for much longer periods.

Happy Thanksgiving everyone! Ellis will be enjoying a few licks of mashed potatoes and whipped cream at dinner.

Signs, Part 2

Here are more sign language videos! Most of these show Ellis responding to images on the ipad, which has been a great tool for us to use to expand her vocabulary. There are some good apps that we use sort of like flashcards to introduce her to new words and signs, but once she learns the concept she signs the word correctly in all contexts. It's hard for me to disguise or hide the camera outside in the park, for example, when she is running (kind of) after a butterfly doing the sign. The links to the left show the American Sign Language sign. We love the website www.mysmarthands.com

ASL for "butterfly"

She still hasn't learned to put her hands together for this one, but she's got the gesture down.

ASL for "chicken"

ASL for "duck"

ASL for "horse"

ASL for "shoes"

This one is extra impressive, in my opinion. About three months ago we were on a walk and a fire truck passed with its siren on. Ellis got scared, so I calmed her down and told her it was just a truck with a siren and did the sign. That was the only time I ever showed her this one, but it must have made quite an impression because, well, just watch. This is the first time she had seen this particular flash card.

ASL for "siren"

ASL for "water"

Happy day everyone!

Babbling Baby

Ellis has had a great week enjoying the last bit of warm weather outside in our pretty park. She especially loved spending the afternoon with her buddies Neko & Robbie!

It looks like the rainy fall weather is going to keep us indoors for the rest of this week, so I have been digging deep into the toy box to find entertainment. Turns out all we needed was a cardboard box in the living room.

 

The box came with the new big girl carseat. Doesn't she look so thrilled?

The really exciting thing happening this week is that we have begun transitioning Ellis to a Passy Muir valve, which will attach to her trach and allow her to speak normally once she is adjusted to it. It will be a long process. We have to get her used to it in tiny five second increments for a while, and then will eventually work her up to a few hours a day. At some point she may be able to wear it all day long, but right now 20 seconds is about her limit. The valve allows her to inhale through the trach like she is used to, but instead of exhaling the same way it forces her to exhale through her mouth. Retraining a baby to breathe is tricky business so we are grateful to have the best speech pathologist around!

Better and Better

Ellis seems to feel much better now that she has rested up from her surgery. We could tell her throat was bothering her for the first day or so and she hasn't been up to many outside adventures, but all in all, this round of surgery was not that bad. She is making her little noises more frequently now and is getting her energy back. We have enjoyed a few quiet days of rest and snuggling and some indoor play time.

You know what makes a sore throat better? Ice water and a favorite raccoon hat. And Daddy, of course.

To pass the time, Ellis has been helping me with laundry too. "Helping" can mean a lot of things I think.

Thank you so much for your prayers and kind messages this week. We are truly blessed.

Surgery update

Ellis did great with her surgery today. In fact, things went so well that her doctor let us come home tonight instead of spending the night in the hospital. Her doctor did not downsize her trach, but things are still progressing. The tissue that was removed today was partially blocking her airway and now that it is gone, downsizing might not be necessary. When the swelling goes down she should be able to get enough air around the trach now that she is bigger and stronger that we can start practicing with a Passy-Muir valve. That's a one-way breathing valve that will allow her to vocalize more once she gets used to it. It may take a few months, but if she does well with it, the next step will be to go back to Children's for capping trials in which they will actually block up her trach to teach her to breathe without it. If that step goes well, getting the trach out for good will follow soon after. We know this process will take a while but we are grateful to be making steps forward. Thank you for all your prayers and kind messages today. Ellis is still feeling tired and cranky and sore, but we know she will rest much better tonight here at home.

Pure Joy

There is nothing better than Ellis laughing.

Ellis will have surgery tomorrow to remove some tissue in her trachea and reshape her epiglottis. We pray these procedures are easier on her than the previous ones. Thank you, everyone, for your prayers. We will update again as soon as we can.

Lovely Little Ladybug

Ellis loves Halloween!! She really is my daughter. She proudly put on her costume and actually enjoyed getting her face painted. She was so excited to show off her cuteness to our friends and neighbors and especially Granny Janny and Granddaddy. When the kiddos from the neighborhood started showing up for candy, Ellis was anxious to help hand it out and see all the ghosts, princesses, and scary lions.

After I painted my face, Ellis signed "Mama" then "cat."

The little bug about to take flight

All this Halloween-ishness has made me sentimental for the olden days. So here's a treat. Get ready to giggle.

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