MaryGrace Update — Back to Ground Zero

I sent out a quick post yesterday asking for prayer and man, you guys came through big. Each and every comment, text, pm, and call meant the world to me. It is so comforting to not feel alone, so… thank you.

Thank you for your prayers, support, stories, and concern.

There have been seasons in my life where social media was not an option for me. I am so grateful that is not the case right now. I need the virtual hugs I received last night.

As for the update…
MG had 2 seizures within 30 minutes last night. They were just as awful as the previous ones.

The look of fear and terror in her eyes, the high pitch blood curdling scream, and then the lifeless little body… all the while I was just holding her helplessly in my arms.

She is doing fine today aside from being very lethargic.

All she wanted this morning was her blankey and her momma. After dropping James off at school we skipped our class at the gym  to come home for a morning nap. She went down without any fight.After talking to the neurologist last night I was devastated to find out that we do in fact have to start the 2 year time line over. I have better explained all this here and here.

The doctor also upped her meds by 25%, meaning she used to take 1 ML morning and night… now she will take 1.25 ML morning and night. Administering the extra meds is no biggie but I am bracing myself for the repercussions of the extra side effects.

If you have been on this journey with us you know that she had a hard time acclimating to the medication. She was extremely agitated and lethargic. I guess we will have to go see the horseys more often again. (It was her therapy when she first started the meds.)

Hopefully, since it was not a huge increase she will adjust easily.
Please be praying for that.

Agitation can be contagious in a house like ours… Especially since it is filled with 3 exhausted boys who are enduring their first week back to school.

I will continue to keep you updated.

Please continue to pray, even after the dust settles.

Even though I don’t write about it all the time… this is a concern that is constantly on this mommas heart.

Every time I leave her in childcare I fear that she will have a seizure and I won’t be there to calm her.
Every time she cries in the night I fear that it was another seizure and I cannot confirm it.
Every time I think about her future… school, work, driving, etc…. I am fearful.

I know all the Christianese answers to these fears.
I know my God is bigger, my God is good, and he has a plan… but I am a momma and sometimes I am just downright filled with fear.

And for the record… I think that I am allowed to be… it brings me to my knees, it makes me fall asleep talking to and pleading with the Lord, it makes me appreciate these sweet little humans God has entrusted me with, and it makes me beg Him for help as I feel so unqualified and inadequate.

Again, from the bottom of my heart,



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6 thoughts on “MaryGrace Update — Back to Ground Zero

  1. I’m sorry! Nothing is scarrier than watching this happening and then wondering when the next one will be!!! Lifting you all up today…PRAYING for peace, rest and healing!!! Pillows are a good place to scream!!!

  2. Will continue to pray for you and Mary Grace.How sad such a small child has to endure this illness. God has a plan and his plan is always right. I understand the fear you have for this child. Remember always you are covered with grace. Love you