17 April 2012

An Update on E

Last year we had a caring bridge website for E.  With all his issues, we had plenty to share on a regular basis, but I stopped doing it when he seemed to be getting better.  Well, here we are, almost exactly a year after his first trip to the hospital, and I have a new update.  He hasn't been gaining weight again.  It has now been over a month with no weight gain.  He had climbed very slowly from the 3% to almost 15% in about 6 months time.  Now he is back down to 7%.  He's still 20lbs, and I am just hoping he doesn't drop below that because I had this whole ceremonious event where I threw out his crappy infant carseat and graduated him to a convertible one......lol.  It isn't unheard of for a 13 month old to not gain or even lose as they become more active.  His activity level really hasn't changed much in the past two months.  He takes a couple steps, he stands, he crawls mostly.  He plays with C.  His development seems normal, except for maybe his speech, but it's really early to tell for that.

We decided to switch GI doctors...ours were not being helpful, our appointments were three months apart and always lasted at least 2-3 hours.  But no tests were ever done to check his progress, severity of the reflux, not allergy tests...nothing.  At the very first appointment, when I told him E had MSPI, he told me he didn't believe food intolerances existed.  At that point, I didn't know enough to question what he was saying.  Instead, I was humiliated and intimidated.  At our last appointment in March, the doctor told us, word for word, that E would never grow big and strong unless he was eating soy and dairy.  I felt like he was saying that I wouldn't have a big tough football player unless I fed my kid crap.  Because, seriously, you don't need soy and dairy anyway.  E's food issues have taken our entire family on an incredible road to eating whole, healthy, and happy diets.  Happy in that I don't get bloated, I don't have indigestion or stomach pains, and we are losing weight.  It's a wonderful thing...but I digress.....(to read more about that, click here)

So anyway, we got a referral from our pedi and were able to get an appointment in just two weeks (unheard of in the GERD world), and saw the new doctor Monday.  He was wonderful!  He was kind, he listened, we actually talked to him and not some random other ten people first.  After asking us questions (and by the way, he got E's info from Children's before our appointment and knew what was going on), he decided E should have an upper endoscopy with biopsies of his esophagus, stomach, and upper intestines, and a lower flex-sigmoidoscopy to check for damage in the lower tract.  And we are scheduled for April 27th.  It's crazy how fast...after how slow.....it's just overwhelming.  In a good way.  So in the week and a half between, we are giving E little bits of dairy, soy, and wheat.  If eosinophils (cells your body releases to fight allergies) show up in the biopsies, we know his food intolerances are actually allergies.  And the reflux would then be a product of that.  Either way, that question should be answered for us.  Any course of action that would take E off the waaay too high of a dose of prevacid he needs to fight the reflux would be wonderful.  Especially since now we are only able to get the name brand, and it costs so much.  It is totally worth it to have him able to sleep and eat, but if there's a better way to control it all, especially if medication wasn't needed...wow that would be amazing.  Pipe dream?  Maybe...but who cares!  It's a good dream to have.

I know a lot of people followed his progress last year, and I am so grateful for it.  Any prayers or encouragement is so welcome.  Thank you friends!

15 April 2012

The Little Moments

A good friend mentioned to me today that she has been having a lot of little moments, where you relish the good things in life, and have this overwhelming feeling of being content.  She said it makes her more relaxed.  I thought I'd share one of these moments I had recently, and reflect on it a bit, since I could use a little relaxation these days.

Jon and I had gone on a road trip recently, about half a day's drive.  We were so tired that by the time we got to the in-laws to pick up E, it was late and we had been on the road and neither of us could barely keep our eyes open.  We still had an hour drive home, and had to stop and get C and the dogs at my mom's, get home and get the kids back to bed, and unload the car.  That feeling of having so much to do when you are so tired....it's not a good feeling.  On the interstate, Jon and I sat in the glow of the radio light and had tidbits of quiet conversation, and little E sat in his carseat, where he usually sleeps, and quietly babbled and readjusted, restless and uncomfortable.  Being jolted awake from a dead sleep can make it very hard to get back to sleep again.  So I leaned back from the passenger seat and held his hand.  And he held mine.  I felt his little body slowly relax, and the feeling of that tiny warm hand completely enclosed by my hand was overwhelming.  My heart grew that day.  The grinch has nothing on a parent, who's heart swells every time their baby makes strong eye contact, every time their child says I love you too or gives hugs and kisses freely, and every time their son, who unlike his sister loves to be reassured by touch, holds on long after your back starts cramping and the seat belt is digging into your hip. It is an amazing thing, and I am so grateful for just that little thing.

09 April 2012

I Heard It This Time

Sometimes I am just confuddled beyond belief about God.  What an enigma, and complete source of love and justice....how does it all balance into perfection?  I read this this morning: Psalms 31:7-8 -  "I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul, and you have no delivered me into the hand of the enemy; you have set my feet in a broad place."  He is not rejoicing because he has been rescued, brought out of his affliction.  He is rejoicing because he has not been ruined, not delivered.  Delivered?  God did not take him to his enemies and hand him over.  But instead, gave him a safe and wide road to walk on.  Sometimes that road gets pretty narrow, but God will not push you off, will not allow you to fall into the depths of despair.  You cling to him, and he will never let you go.  The wording here..."you have known the distress of my soul"...known means that God has experienced it, that he feels it and knows EXACTLY what you are going through.  And so much more.  I am just resting in this today.  Feeling complete and peaceful, being in Iowa City in the spring.  It is so pretty here.  The river, the hills, and the rolling countryside.  While the interstate drive leaves something to be desired, the beauty I experience here in my soul is well worth the drive.  Maybe it is being with an old friend that makes everything shine, but I am happy nonetheless.  And I am reflecting on his sacrifice, his utter despair and pain, and realizing that I have nothing to complain about and nothing to worry about.  I am but a sparrow, loved and adored, and completely safe and taken care of.  Even if I don't see it.  I know it to be true. 

But Who Am I Really

I never ran again.  I twisted my knee, then I got sick...and it all faded.  Maybe I will again.  Seems like there's always a reason not to, which means it is probably worth doing.  It is as big struggle for me, because I really don't enjoy it like a lot of people seem to.  I would much rather be swimming, but that costs money and takes a lot more time.  We just moved, and there is a great park and bike path half a block away.  So really...no excuses. 

But beyond that...this blog is for writing.  Yes that is a part of it, if it is a part of what I'm doing, but it isn't who I am.  I've never been a runner, and I'm not sure I ever will be.  I am all creativity.  I feel it coursing through my veins, and it makes my heart pump so hard I feel like it is going to explode a lot of the time.  Like it needs to get out, and splatter everything around me.  Touch it, make it something that is mine, and beautiful, and stark, and unique.  Something that can touch the soul of another.