As for the happenings since my last update...
From Christmas until the first of February, Isaiah had approximately one fairly strong seizure per week. Thankfully, he rebounded fairly quickly from each of these episodes. Then, starting 2/10, he caught an illness of some sort. This caused his seizures to escalate from one per week to at least one per night for a week. With the exception of once or twice, these seizures have been longer and more severe than his previous seizures. And, he has not rebounded as quickly. Sometimes, he remains completely paralyzed for quite awhile afterward. Other times, he is able to speak softly but unable to move. After he becomes stable again, it almost always takes both Careese and I to get him to the bathroom, changed, and back to bed. Then, we anxiously watch as his twitching slowly fades into sleep. Despite our best efforts, the severity of the seizures has caused him to aspirate some. This has led to breathing issues on top of general weakness the following day. By the grace of God, he is still coming out of his seizures; but it is taking longer, and he is not coming out of them as easily.
It will not surprise you to know that, despite the rough nights, Isaiah still wakes up with a giant smile every morning at 7:30am. "Hi Momma! Hi Daddy!" Those smiles breathe life into us every single morning. The prior night's seizures have really been draining his energy though. Each day following a night seizure, he is pretty weak, fairly twitchy, and loses the ability to walk at least a couple times. It's certainly the weakest we've seen him since we left the hospital. He remains his remarkably happy and smiley self, just far less active with an occasionally strong headache. Again, the past three days have blessedly been better days.
Anyhow, we're scheduled to see his main neurologist in a couple weeks. We've been in regular contact with his pediatrician and pulmonologist. Of course, if he regresses, we will speed up his neurologist appointment...although we have been told that there isn't really much more they can do. They don't believe that higher doses of his existing medications will help. But, they didn't expect him to survive this long or for his rescue meds to continue working. Yet, here we are.
As for what to pray for in addition to the obvious...
Frankly, the week of seizures felt very much like caring for a terminally ill patient. We've gone from facing our worst fear at 3am to absolute elation at seeing a coherent smile at 7:30am to dealing with mundane normalcies of life (generally with a far less cheery attitude than our remarkable boy) at 9am to anxiously arriving at bed time...which basically entails laying still in bed, staring wide-eyed at the ceiling, and listening to the rhythms of Isaiah's breaths in the bed next to ours, praying to survive another night. For the record, despite the prognosis as such, we don't believe that we are dealing with a terminally ill patient. We believe this to be a bump in the road that was initially caused by an immune system response to illness. Regardless, it's really messing with our emotions...hence my whininess. Sorry. Well, not too sorry. I've read the Psalms. David was way whinier than this at times. Thanks, David. I feel better.
Anyhow, we appreciate your prayers. We're still watching God move large and sometimes seemingly stagnant mountains. And, knowing that there is still an army out there praying for us gives us a lot of joy...kind of like our boy's smiles do. So, thank you for walking and praying through this with us. You are a blessing. Yes, you. Thank you.
Oh, and here's a recent photo of a boy dancing with his beautiful momma...a boy who, despite recent setbacks, continues to defy expectations. Isn't that just the best?
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