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! |
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 |
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!
Praying for Ms Maggie and her AMAZING parents!!!! Hugs to you Rachael...
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