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!