Thankful Thursday

That I was able to write this post!!
(and she's still eating!!!!)

For sweet time with these ladies!

For sisters willing to watch his big game

for snugly friends

(ps-this pictures is so telling of their different personalities...serious vs. big goof)

for barefoot toes that love exploring

for generations of faith sharing

Journeying On,

Super Eaters

Before my kids had feeding tubes placed, I was totally ignorant and arrogant about eating.  My thought was simply to do whatever it took to get my kids home and out of the hospital.  I thought that after they were home, my momma instincts would kick in and I would be able to get them to eat.  Well, that just hasn't been the case.  It has been more complex, required more learning, more patience and more faith than I ever thought possible.  But let me tell you, His grace has been more than sufficient for all of these! I haven't always endured (yes, I mean we've often only 'survived') mealtimes, offering little grace to my frustrated eaters, but the Lord has been redeeming mealtime in our house and his works are spectacular!

  

He finished half of a waffle

Ate almost every sprinkle off his donut

(after wiping his fingers and every sprinkle clean)

1/4 cup of cheese and 1/4 of a banana

Bacon:)

peanut butter crackers

scrambled eggs and loads of potato sticks

and has been drinking milk!!

This is huge!! Until now he has only wanted water, which doesn't help much with his calorie intake

and so importantly...he is enjoying it!

A huge blessings and encouragement.

We have been able to cut his tube feedings a little bit, but because he isn't on the growth chart, he has little to spare if he looses weight during a tube wean.  We really need him to have a growth spurt before we can start a serious wean on him.  He is definitely getting there though.

Addison's eating has been....well....let's just say miraculously jump started by the stomach bug  a few weeks ago.  While she was sick, she couldn't tolerate any of her tube feedings, so we just did fluids.  When she got over the bug she started eating...like a lot!  And saying she was hungry (a first!!).  On March 28th she went her first whole day with no calories through her tube.  Since then, she's only had a few bolus feeds here and there to fill in for meals she hasn't done well on. And she's not had a tube feedings since Thursday (April 4th)!  She still doesn't drink nearly enough so we're using the tube to keep her hydrated, but she has needed no calories during this tube wean and has only lost about 6 ounces of weight.  When we can go about three months without using the tube for calories or hydration, we can talk about taking it out for good:)

PS-I'm also very aware that we will win the contest for "most pictures of kids eating" :)

But it was your own eyes that saw all of these great things the Lord has done...
-Duet 11:7

Journeying On,

Circus in a Box

Journeying On,

Thankful Thursday

for our March Madness mimicker

for a heart that loves learning

for protective friends

for wild and crazy play

for bright light of joy in among the darkness

Journeying On,

Thankful Thursday

 for shoes that sparkle 

for days to play football outside

for this surprise face

for fort picnics

for super fast slides

Journeying On,

Tag

In case you need to know how to play tag...

Journeying On,

Thankful Thursday

for things that smell good....

especially when everyone needs a diaper change about the same time

for this girly drama....who thought I would ever say that?:)

for new hair styles

for snuggle buddies

for chances to make snow footprints

Journeying On,

Biopsy Results

About a week ago, Ethan had some minor outpatient surgery and another bone marrow biopsy to see how things are looking.  The surgery and biopsy went great and this little man was a trooper! He was even asking for more 'happy juice' while in recovery:)

The purpose of the biopsy was to see if there were any leukemia cells in the bone marrow and to see what percentage of the cells in his bone marrow are currently being affected by the MDS/Monosomy 7.  By far, the most significant praise is that there is no leukemia!!

I won't pretend to understand all of the medical jargon associated with the tests they run on the bone marrow to come up with these percentages, so it's rather possible that I won't make much sense:) But basically the labs found his bone marrow to have fewer cells than normal bone marrow should have.  They also confirmed that he does still have the Monsomy 7.   Our doctor believes that, although the percentage of cells with Monsomy 7 may have increased from his last biopsy, that we are still about the same place we were because his monthly blood tests are looking acceptable now after a drop in January-about the time our prayer warriors kicked it up a notch:)

The bottom line is that we can check and recheck numbers, labs and percentages all we want, but it doesn't change the fact that we are still experiencing an incredible and gracious miracle from our Father.  A season of healing that is a medical mystery, but no mystery at all to our Sovereign God.  And so, "I will tell of the kindnesses of the Lord, the deeds for which he is to be praised, according to all the Lord has done for us-yes, the many good things he has done according to his compassion and many kindnesses." (Isaiah 63:7)

With much gratitude...

Journeying On,

Thankful Thursday

for cards sent with love

for small treats that bring such delight

that this guy even sucked on his for a few minutes....

we will overcome this crazy oral aversion

 for independent dresser and self proclaimed backwards day 

that I can get away with matching jams for a few more years:)

Journeying On,