Wednesday, October 31, 2012

Embracing Fall

Evelyn and a giant pile of leaves were just made for each other. 



She declared it to be snowing.


You can make a complete mess of them.  Go into full-on destruction mode...and that's the objective of leaf pile play.  


Fits her perfectly. 



Annie was all about the leaves too. 



We'll call this sisterly love.  Evelyn called it a hat.



 

Abraham even got in on it.  He was clearly thrilled.  He tried to eat the leaves which the girls found hilarious. 



Oh my little chickens.  I love you all so much.  Now stop making mommy crazy, okay?

Monday, October 22, 2012

Negative

Thank you to all who prayed with us, cried with us, spoke truth into our lives, and walked this road alongside us. 

Abraham's doctor called this morning to say his test results came back negative.  They were perfect.  He's healthy.

Tears of relief flowed.  We are so thankful for our beautiful son and were preparing our hearts to walk a hard road with him.  We don't know what his future holds, but we rejoice knowing that Schwachman-Diamond, or any other pancreatic disorder, does not appear to be part of it. 


Tuesday, October 16, 2012

Take This Cup, Please?

I've been vacant from this space for a while, and it's because I just haven't known how to explain the current place we are in right now.  Here's the facts of the last few weeks.

When Abraham was readmitted to the hospital after being discharged the first time, he had a whole workup done of labs to figure out why the redness was returning to his rash.  After ruling out antibiotic resistant staph, it was found that he had a zinc deficiency.  Easily treatable.  It was also found that he had fat in his stool, but that could be explained away by the antibiotics he was on at the time.  We were told to repeat the test in a month and all would probably be fine.

We got a call last week though that they weren't fine.  In fact, they were not fine enough that we needed to meet with a gastroenterologist. 

We went to the appointment last Thursday.  The doctor (whom I really like), threw out two possible causes.  Neither were good.  One was Cystic Fibrosis - which he tested negative for on Monday.  The other was Shwachman-Diamond Syndrome.  He fits several of the symptoms including fat in his stool, not growing in length (he's not even a percentile right now), having a low white blood cell count, and being prone to bacterial infections and skin infections.  So he had x-rays done of all his bones and we are waiting on more stool sample tests to come back.  We won't hear back until next Monday.  A loooong 6 days from now. 

Our emotional state varies greatly.  We've both had several full-on break downs over this.  Most the time we just feel like we're getting by.  I don't even know how to pray right now, but have found much comfort in listening to hymns. 

The one prayer we keep repeating is one that mirrors what Christ prayed in the garden preceding his death. 

Lord, please take this cup from us.  We don't want to drink it.  It's bitter.  It's hard.  It feels like too much to bear.  Not our will though Father, but yours be done. 


Tuesday, October 2, 2012

Evelyn: 4

 Evelyn turned 4 at the end of September, and it was one big, pink, sparkly princess kind of day. 


My oldest is really growing up.  She's leaving toddlerhood behind and becoming quite the little girl.


She requested pancakes with berry sauce for breakfast.  Peanut butter and jelly for lunch.  And bacon wrapped dates, cold chicken bones, and french fries for supper.


A strawberry cake with a crown on top was also requested. 


I asked her the same set of questions I asked her last year with a few new ones at the end. 

Who is your best friend?  Pela

What is your favorite color? Pink

What is your favorite animal? cheetah (not sure why she said that, it's usually horses and elephants)

What is your favorite thing to do?  playing at the park

What is your favorite thing to wear?  my dandelion dress (although I would argue that she prefers pajamas or her swimsuit as that is what she is in most days)

What is your favorite food?  hot dogs

What is your favorite TV show?  Calliou and Angelina Ballerina

What is your favorite thing to do in Iowa?  play with Max

What is your favorite thing to do with daddy?  go to work with him

What is your favorite thing to do with mommy?  take care of Abraham

What do you want to be when you grow up?  doctor

What should I tell people about you on my blog?   That I like flowers.  And rainbows.  And bracelets.

She was able to blow out her own candles for the first time ever!  Yay for speech therapy and overcoming some of her fine motor mouth difficulties.  I teared up.  Over candles.  She's pretty special.

A few other favorites in her life are Strawberry Shortcake, unicorns, puzzles, riding her bike, doing crafts, pretending she's a princess, and writing letters to daddy.  She will color a picture and then dictate the words to me.  My favorite one is on the fridge and says this:

Dear Daddy,
I love your for shorts.  For porch.
Like bracelets, I love you.
But I don't know what.
Love, Evelyn

We  love you for shorts too, Evelyn.