Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Friday, May 13, 2011

We're Doin' Big Thangs...

I don't know if I've shared this yet but the kids have been...acting up.  For the past two weeks.  Connor is "too much"....as in, consistently too loud, too expressive, too obnoxious, too physical....  Mia pees her pants on average 3 to 4 times a day (she's potty trained.  Or supposedly.)  And Joel, will not let me walk out of the room without crying.  Yep.  That pretty much sums it up.  The worst part is that there's nothing I can do about it.  It's messed up for them.  Our home is gone, and now we're on a perma-vacation with Mimi and Papa?  I can only imagine what they're feeling.  I try to be sympathetic, but I can't let them run us into the ground either.....sitting Mia on the toilet only to have her piss on the carpet five minutes later will get my desired reaction.

But somehow, SOMEHOW, amidst all of this chaos of insurance, switching things over, and registering for school....our son has morphed into a big boy.  In the past three days Joel has become completely mobile.  Now Connor was a pretty typical boy when he was learning to crawl.  He went for it.  But Joel surpasses this by 500%.  When he figured out how to crawl, he immediately figured out how to pull himself up onto everything in his path, walk with support, fall with grace.  He has found the freedom I know he has wanted for so long.  It's an amazing for me that I can't even begin to describe....I can only wonder how happy he must be right now.

Feeds have changed too.  We're all g-feeds now.  Originally an accident, we had hoped to hook him up for a g-feed in the evening, but it didn't happen, and the extension was left on the g-port.  (I'm sorry for those of you who don't understand this)  When we hooked him up for night feeds, we hooked the bag up to the g-ported extension by mistake.  But he tolerated it!  To make a long story short, transitioning to g-feeds has affected his appetite, and it's a big step toward Joel getting his feeding tube out.  He's disconnected from the feeding pump for longer during the day, and he's able to get hungry, which is dramatically helping our daily feeding therapy.  So, in addition to potato salad, we now have puffs, and stage 3 baby food, and pirate booty....AND WATER OUT OF A SIPPY CUP!!!!!!!!!!!!!!

Monday, May 9, 2011

They Call Me Tater Salad...

video
We're doing lots of fun, new things around here.  Joel's found a new interest in any and everything we're eating.  Last night we had potato salad, and he whined when Adam would forget to give him another "bite"....Who knew that a little mayo, mustard, pickle juice, and vinegar would capture a little boy's heart. :)
(Ok, so this isn't the greatest video of his eating talents...there were two.  The other one involved talking and coughing from the other people at the table and this one had waving in it.  I went with the waving.)

This week he started crawling!  We're only up to 3 "hand-knee's" at a time, but we're getting there.  He's teething, so it's been tough getting him to have the motivation to work on PT.

Waving is another big thing.  When we enter a room, he knows to wave to everyone.  Over and over and over. :)

Drinking.  He wants to drink from a cup.  I'm not sure if this is ok for him to do, but he's getting little mouthfuls of water, and doing a great job.  Water is SO MUCH FUN....or so he thinks.

Meddling.  He's getting into everything.  Last night, he knocked over a giant stand of cd's from his highchair.  He's learned to open and close cabinet drawers...(which sometimes includes his fingers.  Ouch!)  He rolls to Papa's dvd's in the tv stand and throws them all over the living room floor.  With the other kids, this would have drove me insane.  I'm still applauding, because with every new thing, it's just one more miracle we're witnessing.  We'll see how I feel about applauding these fun "messes" by next week. :)

Monday, May 2, 2011

Mommy Needs Peace

My day started out bad.  I mean REAL BAD.  Moving isn't fun anyway, besides the thought of a new adventure, and that wears off quick.  Switching Joel to Oregon services has proven to test my sanity, and sobriety.  (The last one was a joke...kind of.)  Washington state insurance was a piece of cake once we got him on straight medicaid, and during that battle I had a care manager to help with EVERYTHING.  Want to see a specific doctor on market street?  No problem.  Any doctor will take you.  Oregon isn't as easy.  Oregon providers only take a certain number of OHP patients.  And when I called around today, I got rejected by pediatrician's offices....and it left a bad taste in my mouth.  Why isn't Oregon medicaid accepted in all offices?  Anyone know the answer to that question?  I don't.

And then there was the getting Joel ON Oregon insurance.  Which requires a social security card and a birth certificate.  Anyone want to guess where that birth certificate is?  Either in storage container #1, or storage container #2......not enthused about digging through boxes for that piece of paper.

Oh, and then there was the GI doctor from dornbeckers that apparently doesn't have any openings for three to four months, and won't be referring me to anyone closer than Portland because there aren't any pediatric specialists outside of Portland.  Grrreeeeeaaat.

BUT, (this does get better, I promise...) I was driving down Stewart Avenue today to sign a release form at the PT office, and I was so worked up from my morning of aggravating rejection calls.  While stopped at a red light, I felt an overwhelming sense of peace that I haven't felt in months.  And I was reminded of one simple statement.  "You were made to be Joel's mom." 

Instantly it didn't matter what people wouldn't make appointments with us.  It didn't matter what specialists said about wait time, or what obstacles were in our way.  My God is bigger than that.  I am Joel's mommy because I have the ability to persevere through seemingly impossible situations.  I'm not supposed to take no for an answer; I just need to find the right people and ask the right questions.  I am a woman of FAITH.  Thank you, Holy Spirit for guiding me through my day.  One day at a time.