Thursday, August 27, 2015

Quick Update

I have about five minutes for a quick update.  Seeing that it's 10 days after Elena's GI appointment, I need to give you the rundown.  So, appointment went as expected.  Her GI doc is great, but there's only so much she can do.  She did run several tests to rule out things like something with her G-tube, constipation and a more severe issue (ie gallbladder, liver, stomach, etc.)  Elena had a endoscopy several months ago, so we knew there wasn't anything terribly wrong with her esophagus.  So, we're trying an old med that we've done before to see if that helps.  But no real answers.

Elena also saw her longtime speech therapist this week, who thinks, for whatever reason, Elena's gag reflex has been heightened.  So, anything that may have not made her gag in the past, is making her gag now, hence her throwing up and gagging ALL THE TIME.  This definitely makes the most sense to us, as Elena has been realllllly gaggy for quite some time.  And she usually starts as a cough or a weird gag before throwing/spitting up.  So, there's that...which isn't necessarily the easiest problem to treat.

Elena had been doing a little better since her appointment, only having spit ups and mostly around her feeding times.  Then Tuesday at the JC, I got a call saying she had thrown up everything and more during therapy.  So, I guess the silver lining was that for once I didn't have to clean it up?  Yay?

For now it's just something we will be dealing with until it's better.  That's a tough one to swallow (pun intended) but such is life with child who has feeding/swallowing issues.  We'll just keep praying for her gag reflex to settle back down (such an odd prayer request!) and hope that between God and medicine, she'll get some relief.

I'll leave you at least with a cute video of Elena with one of her faves, Miss Lisa (her OT).  Miss Lisa has been with Elena since she was 6 months old and Elena LOVES her.  Each week, we start her session with B-I-N-G-O (one of her favorite songs) and bouncing (another fave) to get Elena to look at Miss Lisa in the eyes, on her left....a really tough task for Elena.  She knows this game, but is always such a stinker!  I took a video of it because every week, I love watching Elena's face during this exercise.  It just makes me happy.

Wednesday, August 12, 2015

Prayer Request

Guys, I haven't asked specifically for a prayer request in a long time.  I know so many of you keep Elena and our family on your prayer list regularly and we are sooooo grateful for that.  If you can over the next week, pray specifically for Elena's GI issues.  Chad and I are so incredibly frustrated and feel like the only thing left is to bombard God with prayers for this.

Most of you know Elena has struggled constantly with severe acid reflux and vomiting since her injury.  Literally for three and a half years we endured daily projectile vomiting.  We've been from doctor to doctor and everyone tries the same thing, then throws up their hands in surrender.  Finally in March, we switched Elena to a new formula that was actually real food blended up.  We were praising God, because for about three months we had NO vomiting.  It was a life changer.  For once we didn't fear the threat of a major vomit in public, in the car or at home.

Out of nowhere, a couple weeks ago,  Elena started vomiting at some point pretty much every single day.  I can't keep her bedding or our "puke towels" clean.  The gagging is incessant.  She's puked at the doctor, the dentist, the Jackson Center, the car, other people's cars, in bed, on the couch, on the babysitter, in the bathtub, in her feeding chair, on me, on Chad....everywhere.  She's pretty miserable around feeding times.  The worst is when she wakes up either from a nap or in the morning.  It's a guaranteed throw up.

We see her GI on Monday.  So in the meantime, please pray for both Elena and the doctor.  We need resolve both for our sanity and for our sweet little girl, who has to endure this.  We're all miserable.

Friday, August 7, 2015

Balancing Act

Lately, I'm finding myself really struggling to balance everything that we have going on.  I know this is a pretty typical Mom-struggle, but the anticipation of how we're going to manage our new fall schedule is really throwing me for a loop.  Just when I think I have it figured it out, I find myself back at square one.

On top of all this, I have MAJOR Mom-guilt.  I simply cannot do it all (though I like to think I can).  I'm realizing I can't be at every one of Elena's therapies (missing one killlllllls me) without totally neglecting Cal.  And Cal is at a really fun stage right now, where he is watching everything we do and loving to explore all things new.  I totally feel like I'm missing that.  This week alone, he was with a babysitter three of the five days.  Elena hasn't even started school yet.  It's such a struggle to be a present Mom with both kids at this stage.  It's a constant juggling act.

This is our normal, but my heart still aches for a "normal" normal.  Like, my four year old's life consists of shuttling from therapy to therapy, to appointment to appointment.  My heart wants it to be filled with tea parties, dress up, trips to the playground, to the pool.  Just once, I want to be in public, pushing Elena in her wheelchair, without feeling everyone's sympathetic eyes on me.  I keep fooling myself into thinking that as time goes on, that longing will go away, that I shouldn't be surprised when I tear up watching a child Elena's age.  It still happens though, a lot.  When it does, it stays with me for a few days, then eventually fades into the busyness that consumes our day until it pops up randomly again.    It never really gets easier, I guess, maybe just different.  I'll probably be writing these same feelings.....well, forever,

My current challenge lies in being the same Mom, differently, to both kids....if that even makes sense!  My job is so different for Elena than it is for Cal.  It doesn't matter how hard I try, I have to neglect one to serve the other.  And that kills me.  Which brings me to our current situation, how do I get Elena to all her appointments during the week and not totally neglect Cal?  He's at an age now, where taking him with me is pretty much out of the question for many reasons.  I'm doing my best to let it shake out for a couple weeks before deciding on anything.  The one thing I do know is that I can't be in two places at once, so it will most definitely need to be a balancing act.