We’ve been off the leads for a while, but the 25 gluey electrodes are coming for Rhema’s head again.
It’s EEG time.
For those who may not know, Rhema was diagnosed with a rare seizure disorder at age 2. Landua Kleffner Syndrome is notoriously hard to treat, and Rhema has endured numerous hospital stays for long-term monitoring, countless EEGs and a myriad of anti-epileptic medications.
Last year it was determined that she was not improving on a high dose diazepam protocol. In fact, her EEGs were getting worse with tests showing her brain spiking 58 times a minute. We decided along with her neurologist to take her off all anti-seizure meds and just see what happened.
What happened was God’s amazing grace. Instead of regressing, Rhema has made tremendous gains this past year – emotionally, socially and academically. Perhaps more importantly she’s been able to retain what she’s learned – that has not always been the case. Many children with LKS suffer seizures during sleep. But she has had more nights of great sleep than ever before – a huge cause for rejoicing in our household! There have been very few outward signs of seizures of any kind. For a whole year! Gone is the girl in a fog.
So, friends, my prayers as we head into this 24-hour EEG:
1) That the technologist, Brandon, Rhema and I all survive the 90-minute EEG hook-up. It’s at least a 3-person job. Even though she’s been through it many times, Rhema gets so upset and scared – she fights us with everything’s she got. When she’s frightened she turns into the Incredible Hulk and can break out of those straight-jacket papoose things no problemo. Once a technologist nearly gave up mid-way through applying the leads and asked me to try another hospital. Today I plan to bring cupcakes for the EEG team, oh yes I do.
But it’s torture for my girl. The glue, the vacuum, the gauze, the sights and sounds, the lying down, the handling of her head. Torture. I’ve tried talking her through it, singing to her, kissing her hot cheeks, never knowing if I’m helping or hurting. I just hope she feels a little comfort knowing I’m there.
2) That we would get a good result. We desperately want to avoid another cycle of endless EEGs and drug trials.
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It dawned on me while writing this that I’ve never really asked for prayer outright on this blog. People have just prayed for us without me even asking. So many children and families have touched my heart through blogging; I’m praying with you, too. So comforting to know we can lift even the simplest concerns to the Father, and He hears.
Good luck little girl.
Thanks Erik!
I am absolutely praying!!
Thank you, Deb!
Once Ian had to get blood taken, and they sent us away because our own Incredible Hulk came out…we were sent to the pediatric blood takers at the hospital, and I enlisted multitudes of prayer…and as Ian sat there serenely, letting them take vial after vial of blood, the nurse asked me, “Is this different than last time?” and I, with awe at the power of God to tame my little beast gave Him all glory to every person in that room…I am praying you have the same experience, and that if that is not to be, that you will see God in every face, in every hand, in every moment, doing what is best for you and for your sweet Rhema.
=). Yes, anything is possible with God. I love your prayer. Thank you, Jett.
Our prayers are with you. My oldest also has LKS, although she did not have as many spikes as your dear one.
Phyllis, I didn’t know your oldest has LKS! Praying for you, too.
Prayers, prayers, prayers..
Thank you, Jude.
Praying, praying, praying!!!! I just prayed that God will comfort Rhema through this whole process – that he will give her peace and help her to understand that he is holding her and caring for her. I just prayed that God will give you and and Brandon and the hospital staff guidance and patience as the leads are being placed. I will continue to pray for you all today.
Beth, thank you. She’s had a rough morning so far, but as you once said: “…The prayers of a band of righteous bloggers is powerful and effective. – James 5:16.” Love that! =)
Prayers are being said in my home for all concerned. God bless.
Thank you so much.
oh of course I will pray too! Our five year old son (six next month) also turns into the incredible hulk for any medical procedure done.
You got it mama. Prayers galore from me. For the entire medical team and your entire family.
The first time my son (on the autism spectrum) went to the dentist, he was so frightened by the experience that we couldn’t get another dentist to take him for four years. My daughter’s dentist met him at a time when I was desperately researching special needs pediatric dentists, and pleaded with us to let her try. He went in and sat for an entire office visit – x-rays and a full cleaning, with the aid of a small amount of understanding and show and tell from the dentist. When it was his time, it was his time. May this be Rhema’s time.
Praying for your Rhema, Hope, Brandon and the entire medical team. Your readers, Your blogging your blogging gals, your friends, your family, lace our fingers with His and we hold all of you. We had to sedate Dawson to put on his Leeds. It was this time last year when when wee were on the similar overpass as you on this journey. I will never forget your sending me you tube links on EEG. You held my Dawson, my Dave and my Mae Mae and now and always we grasps our hands and hold you. Sending prayers, hugs, and love
I prayed through your post. Wish I could be there to bring you a treat or coffee or just a little down time. Big hugs all around.
Thank you for asking for prayer.
James 5:16 Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.
I am absolutely praying for sweet Rhema and your family….. God is so big and good and gracious and will provide.
Ask and you shall receive, my friend
Thinking of you and Rhema. xx
Praying for Rhema, you and everyone involved.
You are likely through it all as I write this. I’m praying for peace and joy as you return home and your mind goes back and forth between the big questions and the mundane, everyday tasks. May you feel firm ground beneath your feet as you wait for results.