I'm writing tonight from the EEG Monitoring Unit at OU Children's Hospital here in Oklahoma City. Henry was admitted this morning and will stay here for the next several days, hooked up to a continuous EEG monitor. This is where the strange prayer comes in . . . we NEED Henry to have seizures while we are here.
- We need these episodes to occur so that they are picked up on the EEG monitor.
- When they are picked up on the EEG monitor, the doctors are able to analyze them and will be able to (hopefully) do the following:
- figure out where the seizures are coming from
- how often they are occurring
- what parts of the brain they are affecting
- and hopefully, what triggers some of the seizures in Henry's brain.
The Child Life Specialist came in and explained to Henry every little detail of the continuous EEG. She let him smell and touch each item, which was exactly what he needed as a sensory-sensitive kid! I was so impressed (and super grateful!)!
Some of you may remember that Henry has a history with seizures and with seizure-like activity. We've seen this on and off since the fall of 2014 - around the same time Henry was diagnosed with PANDAS. Henry had an EEG a year ago which unfortunately DID show seizure activity, so we know Henry has them. We were incredibly grateful that the EEG picked up the bad signals within that short period of time (the typical EEG runs around 45mins-1hr and it doesn't always 'catch' a seizure). Since that time, Henry's been on anti-seizure medication. We've also done MRI's on Henry's brain to help understand the seizures and to give us reasons FOR the seizure activity.
What's strange is that seizures are NOT part of PANDAS or PANS. So basically, children with these disorders don't usually have seizures. It's very rare for them to have such brain activity, so the seizures Henry is having are even more perplexing.
While Henry's MRI's have both come back "abnormal", the doctors do NOT think his seizures stem from that particular abnormality. This is really confusing on several levels but instead of trying to explain it all and making you even MORE confused, I will just say this - the type of seizures Henry has aren't the type that usually present with his particular brain abnormality (insert heavy sigh from deep within my heart).
Child Life brought us a Hope Link Carebasket! At first, they didn't even know we were with Hope Link. It was so fun to be on the receiving side of this!
All hooked up! Henry keeps telling me that he, "looks so weird and gross".
I told him he looks cool, like a Star Wars Character!
Friends, you have been faithful to pray for us through thick and thin. Many of you have been praying for us and with us since the beginning of this roller-coaster journey with Ellie Kate, TEN YEARS AGO! We humbly ask for your prayers again tonight. Please know that we do not take this request lightly, as we know how busy your lives are and how burdened you already are with the heaviness of your own lives. It is such a humbling honor to have you pray along with us and FOR us, Friends. If the Lord leads, please join us in petitioning in the following ways:
- Please join us in praying for Henry to have multiple seizure activity while he is here
- Please pray that Henry wouldn't have any anger outbursts or any behavior that would prevent him from keeping his EEG leads on his head and body. In order for us to catch activity, he must of course have everything on his head and in the right spots!
- Please pray for CLEAR and DEFINITIVE results. We are asking for pure, cut-and-dry answers so that the specialists will know exactly how to treat Henry.
- Please pray for the time to go by quickly - for Henry not to get bored but for him to have a fun and exciting time here.
- Please pray for energy, health and ease of pain for me as I stay here with Henry this week.
- Please pray for our parents (Henry's grandparents) as they help drive Conner and Lucy to and from school and practices and drive Mike to and from work (he still can't drive bc of his entire foot/ankle being in a giant cast). Pray for energy, strength, patience, grace, provision, restful sleep, and protection for all four of them.
- Please pray for Lucy and for Conner as Henry and I are away this week and as big changes have hit our household once again. Pray that their daytime schedule can somewhat stay the same. Pray for PEACE over their bodies and minds.
Oh, Friends! How we covet your prayers! I'm in "survival mode" thankfully, and my mind hasn't been wondering to the "what-if's" or "why us?", which I am incredibly grateful for! I'm choosing to stay focused on the Father this Easter week, even though we are stuck here. It doesn't feel heavy or burdensome, and I know that's because the Lord has made it feel light. What a good gift!
Also, our friends have set us up a meal calendar for the next few days and weeks. Again, we do not take this lightly and we know some of you have literally been bringing groceries or meals for ten years now. Only someone in love with Jesus could serve and love that well for that long! Thank you in advance for loving, serving, giving, and praying for us. You will never know just how deeply your actions touch our hearts and how, with each act of love, just how sweetly you point us to Jesus.
Link to the Meal Calendar: http://www.takethemameal.com/meals.php?t=XTTH9220
Praying for those Seizures from Heaven!!!
Ryan
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