Patience, Polka Dots, Pigtails

 We had some disappointing news this week. We were all set to go for Ellis's capping trials in a couple of weeks, but it has become apparent to us lately that she is simply not ready. She's still doing great during the day with her breathing, even wearing her cap up to 12 hours at a time. But the few times recently she has fallen asleep with it on let us know that she is still struggling at night when everything relaxes. After speaking to her doctor we all agreed that putting her through a 48 hour capping trial was unnecessary right now. He recommended postponing for six months to let her get bigger and stronger and then trying again. We can always consider more surgery to open up breathing room, but none of us want to rush into that right now. We had gotten our hopes up, I suppose, that we were coming to the end of living with a trach. We are still on track, just delayed. So, now we wait.
This verse has been in my mind this week.
"...we glory in tribulations also: knowing that tribulation worketh patience; and patience, experience; and experience, hope." (Romans 5:3-4)  I've been thinking this week about how those words are in exactly the right order.

In the spirit of keeping things positive around here, let's look at some pictures.

Ellis has really enjoyed playing with her removable wall decals, including these colored dots. She very carefully considers each one, usually telling us its color first, then places it purposefully on the wall. I think she has a better grasp of composition at two than I did when I entered architecture school.

Seriously. Who do I call at MoMA?

In another happy moment this week, Ellis was agreeable to trying pigtails, which tickled me to no end. 

It's all I can do not to smother her in kisses every second of every day.

As always, we appreciate your prayers for Ellis's strength and progress and of course, our patience. Thank you!

Baby Genius

One of the things Ellis got from us for her birthday was a set of animal alphabet decals to go over her bed. She had the most fun helping us put them up, and she was doing so great identifying her letters and signing her animals that I asked Greg to grab the camera. 

I just have to brag on the baby for a minute. I am such a proud Mama. She knows most of her letters, some of her numbers, and the basic colors. I am trying to get more on tape so in twenty years when someone says I am making it up I will have proof. We are so proud of her, especially in light of all the challenges she has faced up to this point. She would have every right to be a cranky, difficult baby who just waited on others to do everything for her. But she is exceptionally motivated to learn and be independent. We thank God every day for our biggest blessing. 

More Birthday Pictures

Today was a big day for Ellis. She had her two year check up with her doctor, which went well except for still being terrified of the scale. Then Ellis, Granny Janny, and I went to Kroger! I know, exciting stuff! For most people this might sound like a chore, but Ellis has never been to the grocery before. She's been to the bookstore a couple of times, which she loves. She's been to Starbucks twice. We went inside a pet store once, which blew her mind. And once we took her through the outdoor part of Lowe's to get some flowers. These have all been trips she loved, and I often feel bad for not taking her more places. So today, since Janny was with us anyway and I needed milk, we decided to give it a try. Ellis did so great wearing her trach cap that we didn't even need the suction machine. And she looooovvved Kroger. Especially the produce section. She pointed at every food and did her "vegetable" sign. Yes, I am training her well.

And now that we are finally feeling a little more organized since last week's craziness, here are the rest of Ellis's birthday pics.

Birthday lunch at Granny Janny and Granddaddy's house

A sassy new outfit from Robin Granny & Kenpa

This might be her favorite present.

Ellis says "monkey, monkey" at her Curious George cake. Granny Janny can sure make some cute ones! 

We are calling this Ellis's Corvette. The "princess" license plate has been replaced with one that says  "Go Cats!" 

Go Go Speed Racer

The big present at our house was a little art table and itty bitty chairs.  And lots of markers and crayons, of course.  She has taken to it quickly and is producing priceless art pieces daily. 

That's it for birthday fun. Thank you to everyone who helped make birthday week(s) special! 

 Ellis's next procedure and capping trials have been rescheduled for August 9th. We are practicing every day with the trach cap to give her the best chance possible. On a good day she will wear the cap for 12 hours, which is terrific. For the trials she has to keep it on 48 hours straight, even as she sleeps. More updates soon! 

Birthday Pictures!

Things are getting back to normal around here, and Ellis felt well enough today to romp outside for a bit. Yea! So now to pick up where I left off before all the cooties hit the Hosfields.
For Ellis's birthday this year, we got together her little two-year-old buddies (I'm going to start calling them the 2crew) and one rockstar big sister and headed to the Newport Aquarium. It's one of the only times we have taken her somewhere so public, with hundreds of other children. And now that she's proven my germ paranoia isn't completely unfounded, perhaps next time we will pick somewhere just a little less...hands on. Regardless, Ellis and her buddies (and I hope their parents) had a great time meeting fish, sharks, turtles, birds, and penguins. She just pointed and squealed for two hours. It was the best.

Plotting their inevitable escape from the strollers

I think this is a picture of joy and excitement emanating from Ellis's insides

Adorable Robbie & mama Angela

Pensive Neko & daddy Lee

The amazing Owen & dad Michael

Ellis with Mighty Mike, a 20' crocodile. Eek. 

Ellis is telling us that the little alligator has his mouth wide open, ready to bite! 

I have no love for jellyfish, having been stung badly once. You stay right there in that glass case, you weird pile of glowing goo. 

The jellyfish furniture was funny, though. Michael, Owen, mama Tyler, Neko. 

Amy and I weren't trying to scare Ellis, I promise. Something about fingerpaints...

In the penguin house. Shhh...they are sleeping and we have to keep up the illusion that it's winter so they don't get confused. 

Pretty Beatrice giving some penguin kisses.

Owen loves penguins, too! 

Shark!

Shark!

Seriously, people, Shark!

Remembering Hope

Ellis is feeling better from her recent virus and ear infection, and I am about three days behind her in the recovery process. Even though neither of us is at our best right now, I have to take just a minute to mark this day, which makes my stomach drop every time I see it on my calendar.

Two years ago today Ellis, at only six days old, underwent an 11 hour life saving surgery to remove the mass of malformed lymphatic tissue on her neck, which compromised her airway among other things. I still remember this as the best and worst day of my life. Her surgeons were some of the best in the world, but we know God was the one really in charge that day. We are so thankful.
I was in such a state that day that I don't remember a whole lot of that 11 hours or the days following. I was still so sick myself after my own surgery that I had to go lay down in a hospital room for part of it just to keep my strength. I remember our family being there for help and support. I remember our wonderful pastor and his family coming to sit and pray with us. I remember being wheeled to the cafeteria by Greg and us trying to force ourselves to eat something, which really just dissolved into me crying into my napkins and looking up to see one of Ellis's other doctors who offered some encouragement. Mostly I remember praying all day for hope, which we were blessed with as each update from the operating room came over the phone. And when her surgeons came out to speak to us late that night, openly in the waiting room because we were the only ones still there, I remember trying to picture Ellis growing up, after the hospital, after the surgeries, after the therapies, and not being able to make the picture come together in my head. Something happy seemed so far out of reach. But in the two years since then God has given us so much more than we could ask for. We still aren't quite at the end of these struggles yet, but she has come so far in these two years that we are still filled with hope daily. I wish that if anything, this blog which was started for our far away friends and family but has grown to quite a large and faithful audience, will give hope to someone else who needs it.

Here's a little clip of just a normal day with Ellis, which is more wonderful than anything I could picture two years ago.

Too Much Fun

All the birthday fun last week has caught up with Ellis. This week she has not been feeling well, and yesterday we took her to the doctor to find out she has a respiratory infection, ear infection, and stomach virus. Poor sweet baby. And of course this tired Mama has now caught some of those cooties as well, and I will be making my own doctor visit later today. Ellis has been very comforting, giving lots of hugs and kisses and sharing germs freely.
Aside from making Ellis feel crummy, this latest round of sickness has set back our schedule for her next capping trial, which was scheduled for next week but will now be pushed back into August. She needs to be fully recovered before her doctors will even consider doing another procedure. We also want to give her the best chance possible of passing her tests. So now we just wait. Here's hoping we all get to feeling better soon.

I haven't had much time to organize pictures this week, but here's one to hold you over until I get to do the whole bunch. 

Ellis, enjoying her first visit to the Newport Aquarium and possibly acquiring a virus at the same time

Ellis is 2!

At this time exactly two years ago God did something only He could do and worked through 30 amazing doctors and nurses to give Ellis a safe delivery in spite of some extreme complications. Our sweet miracle baby is a daily reminder of His power and mercy, and today especially we are so thankful. Ellis is a very grown-up two years old today and full of energy and excitement. We have had a great week celebrating her birthday, and I will be posing pictures this week as I get them organized. Thank you, everyone, for all the calls, texts, emails, cards, and visits! Ellis has some amazing people around her!

Ellis having a lick of the super cool Curious George cake made by Granny Janny

And how does a little monkey eat her banana split ice cream? With her monkey toes, of course.