Wednesday, November 30, 2011

If grace is an ocean, we’re all sinking

There are really no words to explain how blessed we are.  Sometimes I just have to sit down and literally get them down in print to see the "bigness" of it all. It's like how tiny Mason looks compared to how huge the beautiful tree is next to him at the hospital. Here is just the tip of the iceberg of why we are so, so overwhelmed with God's goodness this Thanksgiving season.

I cannot think how it could be possible to be any more blessed than we are to have the parents we do. The ways that they have poured out love to us and what they have put up with to help us ... there is just no adequate way to say thank you. The meals you have prepared, the groceries bought, the laundry done, the hours of playing cars with Micah, the miles of wear on your cars (and the train) burning up the roads back and forth, and chauffeuring, the help with projects, the things you have learned to do for Mason, the stress you've endured, the risk you put yourself at just to come with all the illness constantly here, the selflessness and generosity of your whole lives toward us serving in any way you can... for all you have done and are always doing, and most of all for your hearts living out God's love in front of us...THANK YOU THANK YOU, we could never say it or show it enough but .. THANK YOU with every fiber of our being, we are so grateful for you and we LOVE YOU SO MUCH!!

Happy boy playing with his steering wheel! Kicking it on and off by himself! :)
This month Mason started getting infusions where we literally pump a healthy person's antibodies into him for 78 minutes every Tuesday night so he hopefully won't get sick with severe infections so much. It has been wonderful for him to be off antibiotics! He is so much more content! He has started exploring SO much more with his hands and feet as if his nervous system is calming down some! The screaming rash attacks have been coming far less often since he hasn't been so stressed with sickness! He has had one cold type illness since we started him on them, and he sometimes seems somewhat weak or nauseous the next day after the infusion, but even the cold was SO much less severe than viruses in the past. It was like a "normal" baby cold if there is such a thing!! We are also blessed that at least right now, Mason does not seem to be upset at all by us having to poke him with a needle and tape it in for that long. And, the immune globulin infusions are unbelievably expensive but our insurance has covered them 100%! Thank You God!

We are down to 1.7 mLs of Keppra twice a day instead of 2 mLs 2x a day. Mason hasn't had any seizures since August even with the wean and he is now tolerating LOTS more oral stimulation without aversions. He isn't eating yet but this aversion issue to anything touching inside his mouth was something we had to work past before we could hope for good eating and ... he is so much closer!! We put a rubber baby finger toothbrush over a spinning child's toothbrush and he thinks it's hilarious to feel the buzzing in his mouth :)

At Mason's last NICU follow up we told the PT assessing him that we were working toward trying to get insurance to help us buy Mason a gait trainer since he got so excited over a baby walker but was too tall to use it anymore. We were expecting a long wait before anything actually happened since such purchases can take months and might not even be covered. But...the next thing that happened just floored us. This amazing PT said to me, "I have one he can have that's just his size!!" HAVE?? As in, for free?? These things can be hundreds to thousands of dollars! And she was giving it to him to use for however long he needs it!! No waiting for insurance or funding to come through, no wondering if it will even be it is, to use and enjoy, already!! GOD IS SOOO GOOD, thank You Lord for putting us in the path of such a sweet spirit with a servant's heart! We are SO grateful!! This is what hope looks like... :D
 I could go on and on...but for the sake of my readers who know I get way long winded I'll leave it at this for now... thank You thank You thank You to a God who...

...Loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy...
When all of a sudden
I am unaware of these afflictions eclipsed by glory
I realize just how beautiful you are
And how great your affections are for me
And oh, how He loves us so...
We are His portion, and He is our prize
Drawn to redemption by the grace in His eyes
If grace is an ocean, we’re all sinking...
So Heaven meets Earth like a sloppy, wet kiss
And my heart turns violently inside of my chest
I don’t have time to maintain these regrets
When I think about the way
He love us
Oh, how He loves us
How He loves us so

by David Crowder Band

Mason's Mix

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