Wednesday, September 10, 2014

Purple feet and chickens

Eva's feet gratefully received the first of her serial casts today!

Just look at those happy feet!

Eva's feet (not her heel cord necessarily) were stretched and maintained in an almost neutral position while they were casted.  This plaster cast will stay on for a week, will be removed, her legs will be washed, and then the process will be repeated until Eva's range has reached the desired mark or she has plateaued.  We're praying for smooth sailing and good skin integrity!

In other news, we made a new friend, Theresa, while visiting our friends' farm.  Theresa is lucky enough to have a Kubota, and we were lucky enough that she took us on a ride:)


While visiting our friends, we unexpectedly inherited some chickens.  We are now the proud owners of some laying hens, which is a good thing considering how many eggs we eat weekly.

 
I love having hens!  I think it's because it gives me something else to look forward to every day.  When I open up the our door latch to see inside their nests and find eggs, it's a surprise every time.  A good surprise.  It's like hunting for Easter eggs and getting a package in the mail all at the same time.

I recommend getting yourself some hens.

Friday, September 5, 2014

September is here

I have made some scattered reviews of the books we're using for Eva's kindergarten year.  As an aside, don't you love that a kindergarten is a garden of children?  The latest book, The Year at Maple Hill Farm, is really delightful.

Through examples of daily life on a farm, it catalogues seasons and months of the year.  Delightful.

Eva is also a fan.  In fact, reading and rereading this book has helped Eva to (mostly) learn the months, as seen in this little video.


video

Happy September!  May it be the beginning of some blessed fall weather. We love this time of year.

Monday, August 25, 2014

Joy comes in the morning

Last week was a radio silence kind of week.  We encountered some challenges with our adoption process (we are still moving forward, praise God!).  We learned we're going to have to refigure where we buy land to hopefully build.  And I had food poisoning/salmonella something awful for four days.  That means that Eva basically watched movies all last week.  Except for Wednesday.  My friend, Krissie, came by to bring me some meds and she read to Eva.  But by Friday, Eva was in a television stupor zombie-like state.  I don't ever want to get sick again.

We didn't start school last week.  That's okay.  We're not in a rush.

I guess this is a season in life where we're being reminded that our plans don't always work out the way we want them to.  Daniel and I were talking last night, and in hindsight we can see how God has led us this year.  We followed at different times thinking God was leading us to something very specific only to learn that instead, God was leading us gently forward, and that our 'specifics' acted as an impetus rather than an endpoint.

My friend, Jenni, once mentioned offhandedly that following God can make you look like you're crazy.  I agree.  Especially if you share with others as you go.  But you know what?  That's okay too.

"My soul languishes for your salvation; I hope in your word. My eyes fail for watching for your promise;"  Psalm 119: 81-82.  That's where we are right now.  Trusting in our Father who is the air we breathe, who gives good gifts, who died for us, who yielded and took punishment for our sins, who already won the battle, who loves unconditionally...

At the end of our terrible, horrible, no good, very bad week, something big happened.

Eva lost her first tooth!





Instead of the tooth fairy business, we had a tea party for lunch today with Daniel!  Our whole ride into town from The Country, Eva kept saying "Daddy lunch!"  And when we were running an errand a lady asked her what we were eating for lunch.  Eva said, "Daddy."




Sunday, August 17, 2014

Sunday, Sunday

We have a two week old Sunday tradition: I drive us all into town early for church, we drop off Daniel who volunteers for Sunday School, and Eva and I have  a coffee date at Arsaga's on Dickson.

It's glorious, folks.




Eva is very absorbed with people watching while we're there, but she also asks me to read the Bible to her.  So I do.  And she shares some almond milk latte with a fancy straw.

Today I noticed that Eva was leaning a lot more in her chair and it reminded to share her progress.

Botox injections went very, very well.  The injections weaken Eva's muscles and help them and her tendons to relax so that she can achieve more range of motion.

So far the most marked differences we have noticed are Eva's improvement in her voice projection due to better trunk alignment and improvement in her range of motion in her feet.  Eva's feet are clubbed, and we can tell a big difference in her tolerance to stretching and "straightening" out her feet.  We'll get some precise ROM measurements this week when Eva returns to therapy.  Our initial thoughts are that we're pleased with Eva's increased ROM and find the treatment to be worthwhile and cost-effective.

We also plan to do serial casting to address her feet clubbing (should be easier now!) and her shortened heel cord after Labor Day.  Exciteling!

Wednesday, August 13, 2014

Botox Happened

And it was no big deal.

We left before the sun was up both for pre-op and for the procedure.


Eva wasn't stoked about being in a medical facility, but she kept pretty calm for the most part.  When we were home for about six months, I took her to a local women and children's clinic to do some baseline blood work and even the NICU surgeon couldn't get a good stick for enough blood for the labs.  It was a nasty, painful, frustrating, teary business.  So naturally, our sweet, long-remembering Eva is a little bit antsy at medical facilities.  I don't blame her. 

Our primary nurse told me she liked Eva's name, Evalena.  She said they had a doctor on staff with that name, too.  The doctor is from Russia.  Seriously.  Eva ended up with a culturally appropriate name after all. 

One of the OR nurses sews up these sweet little scrub hats for the kids.  Eva chose the Little Mermaid.  She definitely rocked her hat.  


I talked to Eva's orthopaedic surgeon about my anesthesia concerns and also with her anesthesiologist.  My concerns were: malignant hyperthermia and getting the line in for the IV.  We all agreed that while the chances for malignant hyperthermia (MH) were very small, the MH protocol should be used.  The nurse was kind and said that I was a "thorough parent."  I think we all know what that means.

If you are a nerd, like me, you might enjoy reading these two articles.  They provide a good explanation of anesthesia methods used with AMC.

Anesthetic management of a neonate with arthrogryposis multiplex congenita for emergency laparotomy


and


The procedure itself went very smoothly per Eva's surgeon and actually all the staff.  There were several people in the OR: her surgeon, the anesthesiologist, two nurse anesthetists, and an OR nurse.  They all were very thoughtful and doting on our little miss.

When Eva woke up from the procedure, they called me back to see her.  Oh my goodness.  It was so good to hold her.  Daniel and I joke that she's my little koala bear, always on my hip.  It just feels weird without her. 


This is inebriated Eva, post-op in the parking lot.  She was very sweet and very dazed.  She enjoyed watching the first DVD of BBC's Pride and Prejudice on the way home.

Now our plan is to let Eva rest and do some intensive therapy.  We will monitor her range of motion (ROM), positioning in her stander, strength, and active limb use as they will be indicators of the injections' efficacy.  That will let us know if Botox will be an effective treatment for Eva.  We're excited!

Thursday, August 7, 2014

Going up the Country

After therapy today, Eva and I headed out to the river for some fun.

I forgot sunscreen so we were there for 20 minutes.

But it was still fun.




For the full effect, when you look at these pictures, you should listen to  Going up the Country.
It's our theme for this season of life. 

Also, Botox is NEXT WEEK.  So what do I do?  I research anesthesiology journals to find out the appropriate protocols for a small child with anterior horn cell disease (which is part of AMC), because AMCers can respond atypically to anesthesia.  Now I just have to get up the nerve to call the facility and tell them that I am That Mom, and that although I can't and wouldn't want to tell them how to do their jobs, I do want to make sure that their plan of care doesn't conflict with protocols for anterior horn cell disease.  Awesome. 

And we planned a mini vacation to the beach.  This will be our first real-ish vacation in for-e-ver.

AND Eva and I start home-school school August 18th.  Whoa Nelly.  

And I mentioned that she has a loose tooth?  That's kinda freaking me out.  Toddlers don't get loose teeth.  Kids do.  Eva is growing up. 

Monday, July 21, 2014

Greenge and Grorange


That's Eva's "smile" face, her immediate response to your request for her to smile for a picture.
She has some grorange all over her face.  She had some non-dairy veggie lasagna and loved it.  


This is Eva's FIRST LOOSE TOOTH!  It's that front tooth that looks like it's disagreeing with the others on what direction to go.  


And this is our smiley girl.  Still has some grorange going on.



What is grorange, you ask?  And on that note, what is greenge?  Those are orange and green, respectively, from Eva's uncertain voice.   She sometimes gets orange and green confused, but no worries.  She can get by with grorange and greenge.  That way she's never wrong.

Can you sympathize?  Have you ever been uncertain of song lyrics and done some deliberate slurring yourself?  Personally, that never happens to me all the time.