Silent Night

Merry Christmas, y'all! Ellis is feeling much better and has had a great Christmas so far. I'll post lots of pictures in a few days after I finish taking them.

Here are a couple of videos to show you how excited Ellis has been about Christmas coming. This was a couple of nights ago, when she decied to give her new bear a tour of the house. These are a little longer than the videos I ususally post, but I thought it would be funny to give you a glimpse into our typical evenings. You'll notice Conan on tv in the background. Not the 11 pm Conan. That's for babies. This is the 1 am replay of Conan for big girls like Ellis. (I'm joking, of course. Anyone have suggestions for how to make this child sleep?)

Special thanks to friends Jess and Vickie for the sweet bear, sent to Ellis along with all the beautiful flowers when my uncle passed away.

We hope you all are having a blessed Christmas! More pictures soon.

Fa La La La La

We are so ready for Christmas!

What a bad time to get sick! Ellis has developed a stomach virus AND a respiratory virus, so the festivities in our house have had to slow down for a bit. We hope she feels better in time to enjoy Christmas. And we hope that Greg and I can get some rest soon so that we can be awake for it.

Here's the sweet baby, last week before the sickness set in. She loves to swiffer with me.

Jingle Bells

This has been a CRAZY week in the Hite/Harris/Hosfield houses. Sorry I am just now catching up in the bloggy world. Thank you all for the cards, flowers, calls, and visits in this difficult time since my uncle passed away. Your support means more to us than you know. There are still some uncertain days ahead, so we appreciate the continued prayers.
In spite of all that, we are gearing up for Christmas and are trying to make sure Ellis has a memorable holiday. We are looking forward to family visiting soon. Oh, and that jolly old elf Santa will probably stop by as well. ;)
Here are some pictures I took of the sweet baby in her Christmas dress at Granny Janny and Granddaddy's house.

Prayers

Please pray for my family this week. My uncle passed away early this morning after years of dealing with serious health issues. Because of his health problems and our inability to travel with Ellis, she never got to meet her Great Uncle Danny. But we are certain they would have gotten along just great. Her favorite stuffed bear is one that Danny gave to me when I was very young and kept all these years. We frequently sent him pictures of Ellis, which seemed to cheer him up quite a bit. Please be in prayer for our family as we handle his affairs and try to remember him as he would want us to.

Ellis Is Seventeen Months Old!

In celebration of Ellis's 17 month birthday, this post is all about the things that Ellis loves.

The sweet baby is full of energy today! We got to go outside for a bit, enjoying what sunshine we can even though it is chilly. Ellis loves her swing and signs to ask for it all the time. Thanks again to Grandpa George & Trish for this thoughful gift!

Blowing kisses! She loves to show love!

One of Ellis's favorite things to do now is to go in her closet and get hats to dress up in, even at midnight in her pjs.

 This girl loves her accessories!

Something else Ellis loves lately is this silly ipad app with a talking cat. She loves to smack him in the face then laugh and laugh. I just love that she is laughing.

We are looking forward to seeing Robin Granny and GreatGrandMamma this weekend. Ellis also loves company!

Knowin Owen

Today we are asking you to pray for one of Ellis's sweet friends, Owen. He is having surgery today and we are praying for successful outcomes and a quick recovery. Ellis and Owen were in the RCNIC in Cincinnati at the same time after they were born and since then we have had the pleasure of getting to know him and his amazing parents. Their faith and strength have been inspiring to us and everyone else they have encountered along their journey. Click here to go to Owen's blog and follow his progress.

Owen and Ellis on their most recent playdate. We love his happy feet!

Celebrating Small Victories

We are celebrating Ellis's latest accomplishment! She is now able to wear her Passy-Muir valve 60 seconds at a time, exhaling through her mouth and sometimes making real baby sounds as she does it. The process is bittersweet right now. We are getting to hear her sweet voice for the fist time in over a year, and that has brought tears to my eyes every time. Most of those sounds right now are cries, however, because she hates it. Really hates it. It is scary for her to breathe in a different way and she looks at me and Greg like we are trying to kill her. We do the valve trial once a day, usually five times in a row. Some times go better than others, but for the past few days she has been tolerating having it on for around a minute each time. This is great progress from a week ago, when she could only stand it for about ten seconds before spitting up from anger or ripping it off herself. We hope it will get easier on her the longer we try and that she eventually will work up to wearing it all day.
Going along with the celebration theme, here are some funny pics from Ellis's very own Macy's Thanksgiving Day Parade, courtesy of Joe & Moe! Thanks for sharing the fun!

Santa's Little Helper

Ellis is enjoying getting ready for Christmas! Okay, so she's enjoying the new opportunities for mischief.
Yesterday I decided it was time to get the tree up.




Ellis helped me open the box of garland. She kept signing "sheep" over and over and petting it. I hope she didn't think the sheep had exlpoded.



She thought it was so funny to walk through my sorted piles...

and make laps around the table.

After dinner and a change into cutesy pajamas, she helped us unpack oraments.

And roll them around on the floor.

And once a proper mess was made the sweet baby left to go play elsewhere, satisfied with a job well done.

The tree is still not up, but I have a feeling this is going to be a very fun Christmas!

Giving Thanks

It's easy to guess what we are thankful for this year.



This is how Ellis enjoys the fall. She's doing her part to keep the yard tidy.

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.

.

Signs, Part 1

This is the first in a series of posts in which I will show Ellis doing her sign language. These clips are hard to get because she is so smart and so nosy! When I get the camera out, she can't do anything else but try to play with it. I have resorted to hiding the camera in piles of stuffed animals or under blankets or behind furniture and most of the time she still sees it and gets distracted trying to get to it. So it is very time consuming trying to outsmart her or distract her enough. It has taken me weeks just to get this many. I will keep trying and hope to post more eventually. She knows about 25 signs now and uses them without coaching. I try to teach her one or two a week.
If you click on the ASL links, you can see the words as they are meant to be signed. Ellis communicates well with her signs, even if they are not all spot-on. If she were speaking, her pronounciation wouldn't be perfect at this point, but associating an object or action with the word is the important part right now.


ASL for "dog"

ASL for "baby"

ASL for "Mommy"

ASL for "Daddy"

ASL for "flower"

Real Steps!

Since this video was taken last week, Ellis has gotten a lot braver with her steps. She's getting harder to keep up with every day. The sweet baby is still getting over a bad cold but seems to be almost back to normal. At her checkup yesterday she was 22 lbs. 6 ozs. and 32 1/2" tall.

This one is funny. Who needs a Sit 'N Spin?

Ugh

Baby Ellis has had another bug this week, a trend that we are not enjoying. She seems to be better today, so we hope to all get some rest this weekend. Here's a cute shot of Ellis looking out the window and signing "flower." I am still collecting videos of her signing and hope to do a whole post soon of just those. Have a great weekend!

She's a Toddler!

So close!!!

Quick update

Ellis's appointments today went well. Her doctors are not changing anything at this time, which is reassuring and slightly disappointing at the same time. Her eyes are stable and we are supposed to keep patching four hours a day. Her swallowing function is about where it was several months ago. She does well in general but still has trouble controlling food sometimes and does aspirate a trace amount every now and then. We can keep giving her small tastes and new things to try, just no more than 15 mls (3 teaspoons) a day. This is all good news because she is maintaining very well. I think I had gotten my hopes up that her swallowing had improved because as the one feeding her it seems like she is doing so much better, but the test showed us what we can't see from the outside. We are thankful that such things are available so we can hopefully avoid pushing her too hard before she is ready. Ellis was such a little wonder woman today, cooperating for the most part with the demands of the test. Even as I was trying to get her to drink icky barium and shooting thickened paste into her mouth she behaved very well. She didn't like it, but she hid her face instead of throwing a fit. Sweet baby.

Fall Fun

Ellis is feeling much better! We have gotten outside some in the past few days, and she even felt up to a little craft project. Ellis decorated her very first pumpkin! (Thanks to Robin Granny for providing the pumpkin. And thanks to architecture school for teaching me that rubbing alcohol removes permanent marker from skin of you get to it soon enough.)

Tomorrow Ellis will have an eye exam and a video swallow study. We are hoping for great results all around. This little girl is eager to eat big girl food as soon as the doctors say it is okay. Her favorites right now are potato chips (just little licks), hummus, and ice cream. :)

Catching Up

Ellis has been under the weather this week, so there hasn't been much time for blogging. She's cutting six teeth that we can see and feel, and as if that wasn't bad enough, she's had a stomach bug that is wearing us all out. She's feeling better today but still isn't all the way back to her perky self. Maybe staying up until 3 last night has something to do with that. Our nights this week have all pretty much gone that way.

So no new pictures yet this week, unless you all want to see documentation of me doing two loads of stomach-bug laundry every night and us pacing the floors at 2 in the morning trying to induce sleepiness. No? Well then, I'll be happy to share some pictures from last week that are much more fun.

Ellis loved having Grandma Robin & Ken here for a visit! We all got outside for the last bit of warm weather.

Ellis loved playing, reading stories, and dancing around the living room for Robin & Ken.

Ellis being bouncy. If you listen carefully you can hear her little squeaky noises that she has been making lately. She's grown enough that she can occasionally get some air around her trach to make sound. It comes and goes, but we love to hear her voice any way we can get it.

Cousins Tony and Wanda came to see Ellis! Tony is Ellis's seventh cousin. Thanks for visiting! 

Out and About

Late Night with Ellis

We can tell Ellis is feeling better than she did earlier this week. She has much more energy and is eager to play. Even with the hospital stay and all the medication, her sleep schedule hasn't changed at all. We were hoping to get her to an earlier bedtime, but no such luck. She's still not sleepy at all until about 1:30 or 2:00 am no matter what we do! I have read every article, talked to experienced parents, and consulted the doctors. The consensus is that unless we are willing to move her bedtime forward around the clock (keeping her up until 3am, then 4am, then 5am, etc. until we get all the way around again to 9pm), nothing else is going to work. We are weighing the pros and cons but will probably not do this. I don't think this old Mama could take it. So for now, we are just making the best of these late nights. And what's more fun in the middle of the night than oreos, John Cusack movies, and glowsticks?

Thanks, Joe & Moe, for the glowstick fun!