Feeding Clinic

It's been exactly a year since we packed the kids in the car and drove 10+hrs to Baltimore for a feeding evaluation.  You can read all about it here.  Kennedy Krieger Institute recommended Ethan and Addison for their inpatient program.  It is a 6-8 week feeding program that has them in therapy three times a day, while they are closely monitored by a nutritionist and nurse practitioner and tube feedings are weaned.  We were excited, hopeful that our tube feeding days could come to an end.  But just a few days after being home from our evaluation Ethan became very sick and was diagnosed with MDS/Monosomy 7 (you can read about that  here). Since Ethan has had an amazingly good season of health over the last nine months, we were given the clear by his hematologist to move forward with the feeding clinic.  Then we had to wait for RSV season to end, openings in the clinic and for our insurance to approve it.

First we were told late April, then the end of May, then early July and now late July to early August before they would have two openings.  We were moving forward with early August until last week when they called to say our insurance would not approve the inpatient stay.  It was a total shock; they have been great so far at approving home health visits, tons of evaluations, procedures and therapists, even our evaluation last year at the clinic.

So this week we're feeling a bit discouraged and frustrated by this news.  However, I'm primarily feeling convicted about how little I've taken this to the Lord.  I took for granted that insurance was a done deal since they had covered the evaluation.  I'm ashamed to say I've spent more time being frustrated about our delayed start date messing up summer plans than I've spent time on my knees seeking the Lord's direction and patience for my hurried heart.  My flesh is still wrestling with the timing of this, but my heart fully knows He always has perfect timing.  Praying this heart will trust the Spirit's Truth, especially over the next few weeks.

We are going to do what we can to appeal to our insurance.  Thankfully, the clinic has a team that is used to making appeals and will do this at no expense to us.  The down side of the appeal process is that it could take several months, which could lead us back into RSV season and potentially postpone our inpatient stay until next year....we just don't know yet.

But before we start the appeal process we have one last little window of hope.  A doctor from Kennedy Krieger will call the doctor that made the denial decision to further discuss if the inpatient stay is 'medically necessary' for our kiddos.  After that conversation the insurance doctor who denied our request can change his mind, which would set things back in motion immediately without the long appeal process.  We've been told it will be at least a week before this conversation takes place.  Believe me, we're already praying for some divine intervention to take place:)

I've been doing some reading in Hosea the past few weeks; God does a lot of redeeming in Hosea's story.  Trusting the Lord to redeem my lack of faith and these seemingly troubling circumstances.

Hosea 2:15b I will "transform the valley of trouble into a gateway of hope"


Journeying On,

Sensory

Our little man has been working hard in OT (occupational therapy) for the last two years and has made some serious progress.  His goals have been centered around some fine motor coordination and sensory issues.  He used to be so adverse to certain textures that it would make him gag and choke when he would touch them.  This is a huge factor in his food aversion since purees and anything sticky would make him gag.  We've been working for a long time on touching pureed foods and we had a huge break through this week.  Although it's not with food, the fact that he didn't gag or even freak out when finger paint was all over his hands was huge!!  He actually liked it:)  A big thank you to our awesome therapists who keep pushing him (and me) to meet his goals (these pictures are for you, K).

Filled with gratitude that the Lord continues to develop my kiddos

Amazed at the miracle of finger paint

Journeying On,

Thankful Thursday

Sweet time with a gracious and humble saint...also known as Bow:)

('bow' was Addison's first word, so her great-grandmother decided that's what they would call her)

This conversation:

Me: Ethan, did you climb in your bed?

(neither have ever climbed out or in before)

Ethan: Yes!  I need to stay in bed and read my Jesus Bible, Mommy!

 Cousin play

Grassy toes

A challenging message to give thanks

Journeying On,

Joy

Kids find it all the time.  In the simple, small things.
They express it freely with loud laughs and breath taking giggles.
Never embarrassed, just soaking in every minute possible of a joyful moment.
Doing a little sitting and soaking this week...sitting on His Word and soaking in the joy.
Because it is joy from the Father that is my strength.

It's okay if you have to laugh aloud a little on this one....it'll be good for you:)

Praying you soak up His joy today!

Journeying On,

Thankful Thursday

A simple home...

A new bird learning flight....even at the expense of a clean porch:)

Our yogurt experience was outside

 Good morning hair

Lemon water

Journeying On,

Functional Accessories

When my kiddos came home from the hospital with their feeding pumps they were given some backpacks to carry their pumps in.  We have worn them out, dragged them everywhere, spilled lots of formula in them, washed them to death, pealed out the lining, exhausted the zippers and you get the idea.  So I started looking on-line and found some replacements on amazon....for $150 a piece!!!

This discovery led me to the tubie online community where I found Pumpkin Packs.  This little business is owned by some tubie parents who are crafty enough to develop some practical and affordable products for those dependent on feeding tubes.

And lets be honest....they're way more fun!!
And they came just in time to be a new incentive for feeding times.
About a week ago Ethan started crying and telling me he didn't want his tube feeding every afternoon when I would hook him up.  I thought this day might come, but until now they've been incredibly good about sitting still for feedings and water flushes.  Hopefully Ethan will want to wear this backpack so he can be mobile during his feedings.  We'll see, as it's still rather heavy for our little man.

We love and are very thankful for our new 'food bags'!

Journeying On,

Thankful Thursday

Music....really thankful for these musicians

His preferred outfit

My view

A loose connection....when we accelerate the volume increases sometimes...it's like a deluxe feature we didn't used to have:)

Growing up...this sweet girl has grown up so much in the last few weeks.

Standing like a big girl

Talking like a big girl

And a sweet spirit as big as a big girl

Journeying On,

Trust and Obey

I'm thinking this was stuck in their heads because we've had so many 'discussions' about obedience lately. 

Now I pray it will stick in their hearts:) 

Journeying On,