October 12, 2012

Spaghetti Soup

Before you see this miracle meal, you really need to go back and watch the progression from a post last October.

Did you see it?  Did you see the miracle of this boy slowly desiring to put food in his mouth? Over the last several months he has been great at putting a variety of foods in his mouth; it just usually gets spit back out instead of swallowed.  Well last week this boy proved he will one day go to college because he downed some serious ramen noodles (I know...so nutritious).  An appropriate serving size for an almost three-year-old would be about three tablespoons, which I would say he put in and swallowed.



The fact that he even touched these noodles and willingly put them in his mouth is huge progress for his sensory system.  A year ago it would have made him start gagging to touch them with his fingers and today they're hanging off his sweet lips.  The miracle is growing...





We know that the Lord has placed some amazing therapists in our lives over the last 2 1/2 years and we've been incredibly blessed to learn from their expertise, especially with feeding and sensory.  Ethan and Addison are looking forward to continuing to work with them, just not as frequently as they have in the past.  This is in part because we've recently learned that our insurance will not be covering out patient therapy for speech/feeding.  We're appealing it, but  have been told by our doctor that it is unlikely the appeal will change anything.  We were recently told that our appeal to the feeding clinic in Baltimore was also denied, which is not surprising.  We've been expecting these denials and have been researching some other avenues to help our kids continue to progress in their feeding skills.

One option that we are going to pursue is for me to attend an workshop on feeding.  I'll be taking the first weekend in November to attend this training.  Please pray that this will be a helpful tool for our family as we move forward with this growing miracle. Also pray that I will be able to absorb and apply the theories and techniques that will be presented.

And I can't leave out a little update about Addison:)  She is practically a natural these days when it comes to eating. She is doing very well and we are hopeful to continue weaning her from her tube over the next several months.  She continues to struggle to drink enough, so it is possible she'll still need her tube for a while to keep her from dehydration.  Thankfully this girl enjoys her food and is slowly increasing her volume to a healthy level.

 
Celebrating changes taking place in our little people....
for spaghetti soup...
chances at new learning....
growing babies...
miracles.

Journeying On,

October 11, 2012

Thankful Thursday

treats from friends

repellent-note to self, it only works when applied

big bites of 'spaghetti soup'
(more to come on this miracle meal!)

little fans

scarf weather

Journeying On,

October 4, 2012

Thankful Thursday

air guitars and impromptu dance parties

falling leaves, ready for crunching

offered rides for tired feet

cars and clothes and bows that coordinate

 super hero who is super helpful

Journeying On,


October 2, 2012

Silly Logic

Why does learning trust always take me so long?

This is a question I'm asking after almost a year of standing at a small distance from God.  I wouldn't say its been in rebellion, just a lack of trust.  For sometime I couldn't put my finger on what was holding back my heart.  Why wasn't I able to fully enjoy my love relationship with Jesus?  And when I put my finger on it, I wasn't sure if should be embarrassed or hold on to my logic.

You see, last summer before Ethan was diagnosed with a pre-leukemia bone marrow disease, Jesus and I were doing great.  We were spending time together, I was learning him, he was teaching me and it was beautiful; a love relationship, full of trust.  But after two and a half weeks in the hospital with a sick little boy, every relationship in my life was tired.

So where's the silly part?  Well, it came several months later when I realized I was being hesitant to fully love (trust) Jesus again because of a lingering question in my heart and mind. What if Jesus asked me to go back to the hospital again?  What if Jesus' plan was for Ethan to need a bone marrow transplant? And my logic was that if I couldn't hear Jesus, if I wasn't talking with him, then he couldn't ask.

I have no doubt I'm not the first person to partake in this silly logic, but it's time to call it what it is-a lie.  It is a lie from Satan to keep me from trusting and loving my Savior.  Trust is one of the greatest expressions of love, it's really a synonym.  Trust is love and love is trust.

All who confess that Jesus is the Son of God have God living in them, and they live in God.  We know how much God loves us, and we have put our trust in his love.-I John 4:15-16a

Join me in remembering and trusting today. Remembering God's love towards me and trusting God for his goodness. Trusting, because it is the only response possible when the magnitude of God's love resonates in our hearts. When I love, I will trust.

Journeying On,

October 1, 2012

Twins Aren't Always Twins

We all started out the same....with the anticipation of enjoying ourselves

but after the first dropped it was clear that Ethan and Addison are nothing alike when it comes to thrill rides




he anxiously awaits for more of the thrill

  while she ducks for cover

I'm so glad they're not the same
so glad God has created each one of us uniquely 
to enjoy life differently
hope you enjoy your day exactly the way God created you to

Journeying On,



September 27, 2012

Thankful Thursday

offered kisses

returned affection

colors...oh the beautiful colors

life-size learning

unhindered explorers

Journeying On,

September 20, 2012

Thankful Thursday

late afternoon sunlight

 new perspectives

pink and purple morning clouds
(this picture doesn't do it justice...AT ALL!)

days of equipping and encouragement

 a boy who know how to relax

Journeying On,

September 6, 2012

Thankful Thursday

Leaps of faith

Indoor race tracks
A little masking tape and you can have one too:)

A moonlit sky

Teeth full of brownie delight
Yes, he's sitting on the stove...don't judge:)

Chillin with the band

Journeying On,

August 31, 2012

Thankful Thursday

Reasons to send 'thank you' notes

Well moisturized houses


 Acorn treasure hunts

OCD potty training.
Little miss rearranged her stickers by color
(and yes, we're using leftover Christmas stickers)

For a little boy who woke up asking if we could just snuggle today:)

    Journeying On,