More Museum Pictures

Ellis has a new game this week: pulling her eye patch off. It's as if she woke up Monday morning and just decided that her primary goal from now on would be to keep anything from coming near her eye. Each time she removes it I replace it, usually with a new, sticky one, so this game might get expensive pretty quickly. I am trying to keep her distracted and give those hands plenty of things to do, but she has figured out my tricks. Each time I replace the patch she takes it as a personal insult. She has never thrown tantrums, but she gets very sad and sometimes cries. And then as soon as my hands are full with, say, preparing her next tube feed, she rips it off again. I am hoping this is just her testing her limits and once she realizes that the patch will always be replaced she will leave it alone. Maybe.
Other than that we have had a good week and have been able to get outside a bit, which Ellis always enjoys. Each time we go to the park she meets dogs, chases squirrels, and comes back with a new collection of leaves.

Here are some more happy pictures of Ellis at the Explorium last week. We look forward to our next visit!

One small step for Ellis...

...one giant leap for a nervous Mama! This week we did something we have never done before. We took Ellis to a public place! Other than Granny Janny and Granddaddy's house, a handful of friends' houses, Auntie Carrie's wedding last May, and the doctor's office, Ellis has never gone out and about just for fun. She is very vulnerable to catching illnesses, especially from other kids, which is the main reason we don't take her many places. That, and the loud suction machine. And all the other equipment we have to travel with. But we want to send a big thanks to our friend and neighbor Joe for taking us to the Children's Museum (Explorium) in what we called our social experiment. And Ellis loved it! The museum turned out to be the perfect first outing because with all the activity of kids running around and displays with lights and sound running all the time, our noisy suction machine wasn't as much of a disturbance as I thought it might be. And there were good little nooks and crannies to pull Ellis into when she needed suction so we wouldn't be out in the middle of everything. So even though we travel with A LOT of gear, and I went through a whole bottle of hand sanitizer rubbing Ellis down every few minutes, we all had a great time. Ellis was so excited to be around other kids and to touch, hear, and see new things. She squeaked her little noises out constantly as she ran around from display to display. I have to say her favorites were probably the life-size horses, the water table, and the bubble room. Oh, the bubble room. Bless the person who thought of the bubble room. And the person who has to clean it nightly.
I hope we can get back to the museum again soon and next time I will bring my video camera so you all can share the fun. Thanks again, Joe! We could have never done any of that without your help.

A baby horse for a baby adventurer!

Ellis loves bubbles so much she wants to live in one.

Good Reports

Where is the snow?

Ellis had a round of check ups today and all went well. Her vision is a little better but we will continue patching her right eye four hours a day. She tolerates this pretty well, but we will be glad when we can finally quit doing it someday. Her high risk check up also went well and the best news is that we can quit using her oxygen monitor at night now, since she is old enough to position herself comfortably as she sleeps and we have never had it alarm. We will keep the monitor to use as we see fit, such as when she has a cold or some illness and we want to make sure her breathing is adequate. The thought of sleeping without having that monitor on her is causing me some anxiety, I guess because I have gotten used to knowing exactly how she is doing all night long with just a glance. Greg will probably catch me hovering over her with a mirror in front of her trach some night. But I know she will be more comfortable without it, so it's a good thing. So the sweet baby only has to be hooked up to one thing now as she sleeps, her feeding tube. This time last year there was a whole network of wires and tubes, so we are definitely making progress.
More to come later this week, I hope. I still have Christmas pictures and videos to sort, and I have a feeling that is going to take me a while. We can celebrate Christmas again in a couple of months and keep the good tidings flowing. :)

No fun!

Being 18 months old hasn't been that much fun for Ellis so far. A couple of nights ago she spiked a fever and cried for the whole night and next day. The fever has come down and she hasn't gotten sick in any other way, so no doctor visit this time. She seems to be almost back to normal but none of us has slept for a while. Here's hoping tonight is better.
So since the sweet baby hasn't felt up to taking any new pictures, here are a couple sent to us by Robin Granny of one of her very own sweet babies. This is Greg at 18 months!
And the other is Greg with his grandmother,Phyllis, and Greg's step-grandfather Paul. We were all very sorry to lose Paul last week. He was a terrific person with a positive attitude and will be greatly missed. We are sorry Ellis never got to meet him in person but he always said how much he enjoyed seeing the pictures we would send.
While we are sharing the bloggy love, we have to say a huge thanks to Robin Granny for spending almost a week with us and helping out with Ellis when I had to go out of town. It's always great to see her and Ken, and we sooooo appreciate your time and help!

Ellis is 18 Months Old!

Ellis turned 18 months old yesterday and we celebrated with a lick of a chocolate cupcake at Granny Janny and Granddaddy's. I thought it would be fun to do something different today, so with a hat tip to my radio boyfriend Kai Ryssdal, let's look at...

Ellis, By the Numbers

100...days we lived in Cincinnati to make sure Ellis had the best care at and after her birth

98...days in the RCNIC at Cincinnati Children's Hospital after birth

36...weeks gestation at birth

35...signs she knows and uses regularly

33...inches tall, currently

24...pounds and 12 ounces, currently

20...minutes, on average, we can go without suctioning her trach during the day (up from 2 minutes, this time last year)

19.75...inches long, at birth

8...hours a night she sleeps, on average

7...pounds and 3 ounces, at birth

7...major surgeries

5...times a night we get up with her, give or take

4...hours a day she wears her eye patch

4...times a day she has to sit still to get her tube feeds, at a little over an hour each (hard for a baby to do!)

3...times she has tinkled in the potty!

2...weeks between each trach change that we do at home (one of our least favorite things)

2...nights I have been away from her in the last 18 months

1...amazing miracle that we thank God for each day!

I took these pictures a while ago before the weather turned cold, but since today was nice and sunny and we got some outdoor time, I think it's a good time to share them.

Our pretty girl

One Hour!

Ellis is starting the new year off right. She's now able to wear her Passy-Muir valve for a whole hour at a time! This is a big milestone for the little girl. She still tries to pull it off for the first couple of minutes, but then she calms down and enjoys her own voice. I can't even tell you how happy it makes us to hear her babble, laugh, and even cry sometimes, even if it's only for an hour a day. The more practice she has, the better this experience will be for her and the longer she will tolerate wearing the valve. This is the first step in getting the trach out entirely! My hands are usually so busy when she has her valve on (trying to keep her from pulling it off) that I haven't had a chance to video it. But maybe I can set something up soon so all of our bloggy friends can hear her sweet voice too!

Here are some more Christmas pictures. Even more to come as I sort through all million of them. 

Every superhero baby needs a glowing orb

A new bath seat! She loved it in the living room, hated it in the tub. We are working on it.

And Ellis wants to show off her pretty Christmas dress one more time. I love it so much!

Happy New Year!

Ellis says Happy New Year! Here are some of the many photos we took during our Christmas festivities. More to come as I sort through them all.

Santa exploded in our living room

Ellis trying to stand on her head from sheer excitement

Which one shall I open first?

Ellis loved seeing Great Pappa and Evelyn!

A new play tent to keep at Granny Janny and Granddaddy's

We'll post some more soon!