Friday, February 11, 2011

update on ACTH

Emily is on day 8 of her ACTH injections.
She just had 3 whole days of no spasms, only seizures, and then this evening she had a couple single, weak spasms.
It was a heart wrenching feeling.

We are pumping our little girl full of steroids that make her cry, swell, elevate her blood pressure and blood sugar and make her have an insatiable appetite.

She screams for hours on end. It is hard to not be able to help her.

She is just starting to swell a little and her blood pressure is just starting to climb, we are watching it very closely.

Her very loose muscles are getting increasingly tighter, we stretch her daily to combat this.

All of these things are what we are doing in a desperate attempt to stop her infantile spasms.

Infantile spasms are that bad.

Emily is having seizures but only when she is falling asleep or waking up and they are pretty manageable.

I am praying so hard that all of this is worth it.

It is hard on Joe and myself also. We are stressed and tired. Our only nurse has been off all week because of a back injury and like I said before we have no one else that knows how to take care of Emily so it is just us.

Joe had a death in the family and had to travel out of town for the night so it was just me and Emily. I was never so glad to see Joe come home.

I am trying so hard to pray and be faithful to God and trust that His will is best for us. I am not going to lie, it is hard. I know that God loves us and He loves Emily more than we do. I know that. Some days I just don't feel that.
Some days I feel so incredibly alone.
A sweet friend sent me a psalm she has been reading a lot lately and I have read it and reread it. Psalm 27.
Also 2 Corinthians 4:16-18 has helped.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

This life is temporary.

I can not wait until the day comes when I can meet Emily in heaven and she will walk up to me and hug me and tell me she loves me.
One day she will be healthy and without seizures.
One day we WILL defeat epilepsy. It will not control us forever.

Until then we will fight.


  1. Praying! I pray that these weak spasms were just the last of them, filtering their way out. I pray that you don't see anymore! This sentence brought me to tears -
    "So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."

  2. I hear all the time some things are harder before they get easier & I'm just praying so much that this round of steroids that is so hard on Emily - & you & Joe - will be the hardest thing she has left in her life. That it makes a different in the end - that the fight can ease up after this treatment has stopped.
    I'm amazed at all of your strength every day friend!!!!

  3. Amen to that...All of that!!!

    I hate the steroids, but it's definitely worth a shot if it stops the IS.

    I know how lonely and isolating all of this can be at times...look for those moments that God is revealing himself throughout the day...I know HE is walking you through this...he sees every tear shed, knows your heartache and pain...I am certain if you keep your eyes open and fixed on him, you will see his presence in small moments throughout your days.

    I too can't wait to run free with know my son outside of seizures and see his broken body whole...I imagine a beautiful garden where all of Gods littlest soldiers are running, giggling, playing as they would have here...we will all be rejoicing in that sight!!!!

    In the meantime, we never stop fighting, and we never stop praying for healing on this side.

    Praying for your precious Emily...

    Hugs...Deb and Hudson

  4. Praise the Lord that this life is not the end. We have an amazing Father who loves us and cares for us and knows our needs better than we know them. Continue to seek him, trust that he will graciously give you the strength you need to face each day, each minute. Keep reading his word and let it dwell richly in your heart so when emotions seem overwhelming you will remember what is true. He is renewing you day by day and will continue the work he has begun in you until the day of completion.

    Romans 5:2-5 has been an encouragement for me, too, so I wanted to share it with you.

    "Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

    Praying for you guys. :)

  5. Our son was diagnosed this week with IS and I found your blog. It looks like we will be going through some of the same stuff and the same time.