Turning 5 by His Faithfulness

Birthdays.  Days of celebrating. Making the honoree feel special.  Reminding them how much you love and are thankful for them.  Reminiscing about their lives. We love birthdays!  But to be honest, a couple of birthdays around here are hard on the heart.  And it's taken me 5 of these birthdays to figure out how this is going to go.  

You see, it's strange because as I remember the first time I saw my sweet ones, the first time I touched their precious little perfectly formed bodies, I remember how much I loved them and how perfect they were.  But at the same time I'm taken back to the most traumatic event in my life. When my health was in serious question.  When these incredibly fragile, but totally miraculous two babies were fighting for every breath and on the brink of being too small and too immature to be helped by modern day medicine.

These birthdays are a strange business for the heart.  

But 5 years later I'm finding that the emotions of incredible thankfulness and great joy for the miracles is by far outweighing the heartache that came with their birth.  You see these babies have had every statistic in the book thrown at them and more tests than I can remember come back with less than favorable results.  X-rays that said we would be ventilator or at least oxygen dependent for life, eye tests that said we would loose vision, brains scans that said we would have limited communication and be unable to walk, heart scans showing holes, tummys that wouldn't work right, throats that couldn't swallow and blood that promised leukemia.  

I know there are lots of sweet little ones that don't leave the NICU.  And many who leave with huge health and and developmental hurtles to leap.  And while I don't know all the reasons why these 25 weekers, weighing in at 14 and 18 ounces, don't fall into the statistical norms, I am certain that it has everything to do with Jesus.  I don't know why He heals some on this earth and completely heals others by bringing them into Glory, but I know I don't want to waste one day of this gift of life.

So with hearts full of thankfulness, we celebrate all the chapters in these little lives.  The good and the hard, because it's a story that can't be denied the hand of God as author.  Because He is faithful and personal and the giver of life.  Because He loved me to the cross long before he sustained and healed these little people.  Because of Jesus...life is worth celebrating!  

Journeying On,

Baby Maxwell

Loved welcoming this precious new nephew prince last week

Mr Maxwell William Raby is most certainly a keeper

and his cousins are super excited

(thank you, husband for making this precious video)

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,

Tag

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

Journeying On,

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,

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,

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,

Contagious

You know that banking/investment commercial where people see complete strangers doing 'good deeds' and it inspires them to pass on the good deed to others?  Well, I feel like my kids challenge me on this every day!

I can be completely flustered, burning dinner or just plain tired and I'll hear Ethan's laugh or see Addison make one of her faker faces and it brings be back down to the joy of the small moments.

And the small moments of joy are so very contagious. 

I read a great article this week on the mundane of mothering in the young kid stage.

If you have a minute you should check it out here

Journeying On,

Worshiper

Little man LOVES!!! music

Every time we get in the car he asks for this song

And sometimes he asks to get in the car just to listen to it, 

even if we're not going anywhere

He sings with great conviction and much passion

It's a little long, but captures his heart so well

Journeying On,

Perspective

For the last few weeks I have been attempting to organize and back up all of our pictures and videos, which has been a long process.  Part of me is sad that it is done from behind a computer.  I think I would enjoy sorting piles of memories, while sitting on my living room floor.  But the digital world does seem a little more efficient:)  As I was sorting, I ran across a couple of videos that deeply encouraged my heart. 

You see, we're still fighting the battle of eating in our home.  We try daily, and fail often.  My heart is frequently discouraged over this, wishing for a secret method that work at every meal...

But God desires my heart to learn patience...and I have a long way to go.  Of course, I wish he didn't need to use my children to teach me this, but it's not the first, nor will it be the last lesson He teaches me through them.

This was taken almost one year ago...

Not a big fan of food in his mouth

This was taken last week...

So today I'm choosing to look at the big picture...

to see how God is working over time...

as strength and healing are brought to their little mouths, throats and brains...

hoping my heart remembers, and holds on to these miracle moments...

Journeying On,

Happy Juice

Before his bone marrow biopsy on Wednesday he got some "happy juice"

He's was feeling pretty good afterwards for about 10 minutes...

then he crashed.

I'm a little biased, but I just love his giggles:)

So thankful for your prayers while we keep waiting!

Journeying On,

Little Steps

This is a week or so late, but these things are hard to catch on video:)

Good work little man!

Journeying On,

His Goodness Continues

Last fall this little miss had a MRI and a neurologist that weren't sure she would ever crawl, yet alone walk!

We praise you, LORD, for all your glorious power. With music and singing we celebrate your mighty acts. -Psalm 21:13



Journeying On,

Come Back Spring

We are already missing those two days of Spring we had last week! We took advantage of it though and let the babies try out the wagon they got for their birthday.  They LOVED it:)

Journeying On,