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


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.  

Thursday, July 10, 2014

the news lately

1. we went to moonshine beach again

  •     it's a lake beach that's about two hours away.  score. 
  •     Eva actually had fun in the water this time
  •     We took pictures but they're on our Real Camera and we can't find the cable for our Real Camera since we moved.
  •     I broke my no-personal-shopping rule and bought an "I'm a mom" rash guard-my new water uniform.  Where have these been all my life???
  •     We met up with Ruby's family (Kira Ruby, a sweet little miss from Eva's old stomping grounds) while we were in Branson and had a lovely lunch and afternoon together!  They live in Wyoming so it was an awesome, unexpected opportunity to be able to meet up
  •     Eva may have liked the water better but she has a new thing where she does NOT like to be away from home.  

2. we have started adoption paperwork again

  • the country is Hague so we are using an agency.  Hallelujah!  Agency adoptions are the way to go, seriously.  Adoptions are costly.  Using an agency brings your costs up a little bit, but it's way worth it!  They take care of things and that's nice. 
  • we are pursuing a specific child
  • this child has a lot in common with Eva
  • we're not at the stage where we can share a lot publicly but are looking forward to sharing more news when the time comes
  • there are no guarantees at this point in the process and we're trusting our Father completely
3. we've found land
  • we found a spot by the White River and we're hoping to buy some land and start building
  • we're excitel-ed!
  • Daniel, the planner, wants to get this done before we come home with our second child.
  • i love that guy
4. Botox Rescheduled
  • mid August
  • everything looks like it's going smoothly with our insurance
  • praise. God. 
5. vacation???  help!
  • I really want to go on a small vacation, just the three of us, before we become a family of four.
  • like, friday-monday small
  • we have been talking about visiting Northern California/SW Oregon for two years now. Two years.  I think it's time to make it happen.
  • I need to see the Redwoods and Eva needs to see the beach and Daniel needs a real vacation
  • we can get super cheap tickets through Allegiant Air-woot woot!
  • we are saving for an adoption and don't want to break the bank but we also want to be realistic about travel costs
  • have searched vrbo but would love to hear from anyone who knows the area???
In other news, our daughter is cute

have a lovely weekend!

Wednesday, June 25, 2014

Happy 5th Birthday Evalena Claire Claire!

Today is Eva's fifth birthday.

Oh my goodness.  That girl.

We got up this morning and started celebrating.
opened a gift this morning (outfit. kitty cat ballet flats.  For real.)
had eggs for breakfast (her current fav)
went to therapy (never a bad thing)
had her first latte all to herself (mama Carmen's.  she squealed)
rode in the cart for a few groceries (LOVES riding in the cart)
brought lunch to her daddy (loves her daddy:)
watched Pride and Prejudice (a treat as we have cut way back on movies)
had dinner of her choice (apples, almond butter, coconut milk...and she squealed again)
had cake for the first time (i shouldn't insult cake by calling it cake, but whatever.  it's like cake but no sugar...but, Eva liked it and she squealed. again)
opened the rest of her presents (art stuff and Nathalie Lete tea set and a red baby grand)
fell asleep early;)


It was a good birthday.

We are so thankful to our Father who gives good gifts.  Eva is such a gift.  Such a joy.

Tuesday, June 17, 2014

Fine Art 101

Eva's birthday is at the end of the month.  We tend to celebrate birthmonths around here rather than just the day.

Eva opened an early birthmonth present from her Granna and Pop-pop.  Art supplies.  The girl is smitten.  Except she would not smile for any pictures.

These were practice runs.  I drew some to show Eva how, and she copied.  In case you're worried, I drew the creepy smiley face.  It's hard to draw with your mouth.  Just sayin'.  

It was beautiful.  Eva would say, "I want _____ (insert color) please."  I would pop the marker in her mouth.  She would adjust the marker and draw.  She would then turn to me so I could take the marker from her, and we would repeat the process.  It was really wonderful.  I felt like a surgeon's assistant.

I mentioned Eva knows all her colors, right?  She zoomed through Pantone Colors.  I really like the book.  You can teach basic colors and also let kids learn that there are different hues associated with the basic colors.  

This one is Eva's independent and final product....but really I think she would have just kept going.  This girl loves to draw.