I am so frustrated, devastated, and sad but the analogy that keeps popping into my head is Candyland. (I have a serious love/hate relationship with that game.) I felt like we were smoothly skipping down the rainbow colored squares and then BAM, pulled the Mr. Mint card, or in this case the “sleep seizure/language regression” card and had to go all the way back to the peppermint forest.
A few weeks ago, I let you know that my sweet girl had made it to the 5 month mark! She was making some progress on this wretched time table. I also mentioned that there were a few new concerns.
After expressing the concerns and linking them with some very strange sleep patterns MG’s neurologist concluded she has been having seizures in her sleep. He explained that sleep sometimes activates the electrical charges in the brain that cause seizures. Unfortunately, when the brain is in sleep mode it is not able to protect everything stored. Thus, the regression in her language.
I thought that cold and flu season was going to make fevers my archenemy, but so far so good! Instead, sleep is the enemy right now because for people with epilepsy, sleep problems are a double-edged sword; epilepsy disturbs sleep and sleep deprivation aggravates epilepsy.
We are just waiting on a call from her speech therapist to schedule her first appointment. (I will let you know how my strong-willed child does with being told to speak. At least with the physical therapy we were able to trick her a bit, however… there were plenty of days that she dug her heels in and refused to participate.)
Unfortunately, all of this means we have to restart the time table, adjust her meds and go in for an overnight sleep study.
Any other time my kids are sick, I whip into Dr. Mom mode and start up the home remedies.
I want to do something motherly that would fix it.
But this time I can’t.
I feel so helpless.
I just want to take this burden from her.
I know I am not in control,
I believe God has a plan,
and I trust He somehow loves her more than we do.
So once again, I ask of you…
Please keep her in your thoughts and please, please, please continue to pray for my girl.
I want her to have a healthy, happy future full of endless options and opportunities.
Please, please pray.
This mama feels helpless and is turning her face to the Creator, the Comforter, and the Abba Father.
If you share this post, will you please hashtag it with #PrayersForMaryGrace? Someday I want to show her how very special she is and how many people are/were praying for her.
From the bottom of my heart,
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