What have you been praying for?

Not sure what you all have been praying for. Just after I posted the plea for more prayers for the spasms to stop, it seemed they actually got more intense. Grr...
Thus, we upped her evening dose again. And her bowels have slowed again. And her overall toxicity has increased again. (I can tell her liver is working hard as she has more breakouts popping up. Our therapist has also been monitoring this toxicity) And we wait for spasm control again. And we still see the spasms again. Not happy about this continuing. Often times when she is spasming, my eyes had been welling up with years as I pondering what is going on inside her brain, the damage that is being caused, and the effects on her future. A couple of things I have become apparent to me. 1) the reminder that those FEARS are not TRUTH. The truth is that I have one sweet little girl sitting in front of me that is making progress and trying to get her body to do new things. 2) She is more than likely completely aware of her surroundings while spasming. Instead of laying her down and just letting her spasm, I have tried to be more present while she is spasming by reassuring and talking to her.
So, to answer my most difficult question, "how is Maggie?" "We still don't have the spasms controlled yet, but she still seems to be making some forward progress."
We also went to the cardiologist on Monday. The original PFO (slight hile in her heart) is closing up nicely and it would not be causing the seizure issues. He said any heart related/blood flow issues are secondary to the seizures. As crazy as this sounds, I was somewhat disappointed. It would just be nice to have something to put our finger on. But if there was something wrong, the "fix" would most likely be more medicine or open heart surgery, neither of which we would be ok with. Shawn convinced me that it really was good news. I just can't let go of my suspicion of bloodflow/oxygen/pressure issues. Piotr also pointed out that she is "fixing" stuff every time we go to therapy. She is making good changes and getting stronger. In our world of instant gratification, I am to the point of looking for that quick fix. Don't think that's in our cards. But I'm thinking learning patience and endurance is. Hmm...
Right now we are on our way to Grandma and Grandpa Hennings' Ranch in Missouri. Tomorrow they are having a benefit ride and auction for Maggie on the trails at the campground. This is Maggie's first time to visit. Aunt Brooke, Uncle Tyler, and the girls live there now too. Plus Gma and Gpa Leyen, Great Aunt Linda, and Great Grandma and Grandpa are coming down to visit too! We figured Maggie better make an appearance at her own benefit. We're excited to see everyone, and we're only an hour away!!

Waiting for spasm control

I guess we are long overdue for an update.  I keep thinking if I wait a couple of more days, the content of what I share will change.  I would love to say, "the new medicine is effective and the spasms are under control."  Unfortunately, that is not the case.  As everyone asks, "How's she doing?"  My patent answer this week and the past month has been..."these spasms are still not under control.  We are waiting for the medicine to get them regulated."  Grr...  It's almost been 2 months since the spasms started and 4 weeks since we've started the medicine.  Originally our neurologist said it could take at least a month, but in the most recent conversation he said it takes some kids 1-2 months for the meds to have full efficacy.  Hmm...  There is just no good answer.  I would rather this medicine would kick in than us having to explore other options.  (That stinkin hormone therapy looms over our heads with each day the spasms are still present.)  Heck, what would actually be wonderful is if we didn't have to deal with these spasms or seizures at all!
Luckily the spasms don't seem painful, but they are a form of a generalized seizure, affecting all over her brain.  Grr...  I've joined a couple of groups for Infantile Spasms that have been a good chance to bounce questions around.  It is surprising to me though, how all over the place this can be.  Everyone has a completely different experience.  And, the outcomes are just as despairing.  Only 1 in 10 have full recovery, 3 of 10 develop autism, etc..  Our goal is to beat the statistics, and if not, to help Mags have the most comfortable and enjoyable life she can have.
The past couple of weeks we have spent all our extra energy working on strengthening muscles.  This means Maggie has spent a lot of time on her lying on her side.  Once she determines a direction to go, then I put her back on her side.  On her tummy she has been pushing herself up some and is getting stronger with lifting her head.  She got a new wedge for Easter and has been having fun getting a new perspective of things around her.  She's getting stronger!!  We just keep waiting for her to be able to stabilize her head.

Look at how long she is.  Big girl!

In other news...(I've committed to a level of transparency so those of you loving on us and encouraging us in this journey can better know how to pray for us.)  Mommy and Daddy have had days of major struggles lately.  My family jokes about being on Code Orange. (change of mood/stress level that precedes a blow up)  It's generally the warning code used to describe my Dad's tone in his voice, but Shawn pointed out the other day that the undercurrent of stress in our household has us both in a constant state of Code Orange.  That's not the best for our relationship or others around us.  Luckily, we have an amazing small group that has helped us recognize more the roots of issues, helped us to better appreciate one another, and prompted us to continue strengthen our relationships with Christ.
It is absolutely amazing to me the simple things that make life that much more bearable: The recent sunshine has been tremendous in boosting mood and motivation.  I was finally able to go for a run yesterday, and it felt so good.  My family needs me to do that much more consistently.  And, without a doubt, the most beneficial discipline for keeping me sharp mentally and emotionally is my spiritual relationship with the Lord and spending time in God's Word.  Where we are in life, it is so easy to get bogged down by all the "what-ifs", but God's Word is Truth that transcends all the possibilities.  He's got us in the palm of His hand.
A few lyrics from our Easter service jumped out to me:
From Mighty to Save:
So take me as You find me
All my fears & failures
Fill my life again

I give my life to follow
Everything I believe in
Now I surrender (I surrender)

 And, basically the whole song of Because He Lives:

Easter doll baby

(Chorus)
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives

 (Verse 2)
How sweet to hold
A newborn baby
And feel the pride
And joy he gives
But greater still
The calm assurance
This child can face
Uncertain days
Because he lives


(Verse 3)
And then one day
I'll cross the river
I'll fight life's final war with pain
And then as death
Gives way to victory
I'll see the lights
Of glory and
I'll know he lives


As the tears were streaming down my face, a sweet friend and momma of a little guy close to Maggie's age leaned over and whispered, "it wasn't very nice to Rachael Selmeski for us to do these songs today."

The kids weren't too thrilled with the picture taking!

Ok...a couple of other things.  We got the opportunity last week to meet our little neuro buddy, Everett.  How awesome to spend time with another family that gets what we are experiencing. 

And, finally, today we brought home a feeding chair from therapy.  We're testing it out.  If it works well, we will look into getting one to keep.  It seems to be helping support her more properly and better keep her diaphragm opened up.  If this can help feedings go better, that will allow us to utilize our limited awake time in other ways. Yeah!

Maybe if I actually updated more often these post wouldn't have to be an all evening endeavor.

Join us in ramping up the prayers for complete control of the spasms soon!