Wednesday, July 2, 2014

I believe in miracles

   Miracles are happening around the Johnson home.  I know miracles are happening every day around the house, but some days I don't take the time to recognize them, or other times I forget that miracles still happen even when there's hard work involved.  So maybe that's the biggest lesson here, the fact that you have to work really hard to see some results doesn't negate the fact that it's a complete blessing and miracle given to our family.  On that deep thoughts note, here's the monthly break down.
    Bad news after Evey's ear surgery, and replacing her ear tubes for the third time: we found out her hearing is actually getting worse.  Everyone's thinking she will go completely deaf in both ears at this rate.  Good news is she can wear her hearing aids and that will help as long as she doesn't grow more polyps around her ear drum.  Also, we are working on Sign Language, which will also be a process because her fine motor movement is a hot mess.  So basically her signs all look like vigorous clapping for now, but it still is undeniably adorable.  This might not be bad news though - in our house, hearing loss could just be a blessing in disguise.  Also, Evey still loves when I sing to her, even though I'm tone deaf, which is also a blessing of her being deaf.  Our glass is definitely half full.
    The very exciting news that I've been keeping kind of hush about for fear of jinxing it is that she has been 100% off the feeding tube for over a week now.  She did it!!!
     She's been taking bites of food here and there, and she also learned how to drink from a straw a couple of weeks ago.  I took the plunge to wean her a couple of weeks ago in a kind of controversial way.
     It happened so quickly, and it is seriously unheard of to wean a kid off their feeding tube in just a few weeks time.  She has actually gained a little weight for the first time in a long time, and is getting all of her daily calories in and through drink & food.  It has definitely been hard work, but this is one miracle we cannot deny.  I'm going to write more about what we did with her wean in the next blog post for my other tubie mamas out there.  For now I'll keep this brief.  Well, Cally brief that is.
    Last, she is officially bearing weight and standing while her hands are being held.  She'll even take steps in her walker without her seat (which we've removed) and when you hold her hands.  It is so awesome, and I'm so proud of her.
     I asked one of her physical therapists the other day what she'd look like when she walked and what she has seen with other spinal rod patients.  She told me that she didn't want to say this when we first met, but that she's never seen someone have the VEPTR procedure that young and walk, so Evey is the first she has seen.  She pretty much walks like a ballerina, practically on her toes and with her feet out and it looks so wrong and painful, but she does better when we remember to put her ankle braces on.  She hates crawling with the ankle braces on, so I hate having them on all day when she's still crawling around.  I need to get better about that - I am human after all.
     The amazing thing about Evey is she did all of this within a month.  She is an 'all or nothing' type of girl - her sense of will is so apparent to everyone around her.  There's this giant spirit that wants to be a part of the team, and not even her broken body will stop her.
     I know none of this would be possible without Evey's people both here and on the other side.  They rally for her and fight for her and give her the tenacity to keep on going, even when it seems like her body is against her.  The last 4 weeks have been such hard work for me, which I don't usually say, but at the end of the day, my burden has been made very light, by those same people and angels.     
     I'm always so grateful to mooch off her spirit and bask in her light and those that surround her and by default, me.  I'm learning that the more I stick to the light, the more it makes the bumps so miniscule compared to the miracles.  We weren't even fazed with the news of her hearing, because we were to busy riding on the miracle, grateful train.  God is so good to our family and I'm so grateful He continues to pour His light down upon us.
     We are blessed.