I realized the other day I never updated the blog on JT's newest condition. Of course, one thing lead to another and I forgot to post. Then I realized again that I hadn't updated and, well, you know that little thing called life, just keeps getting in the way. So here I am making a point to update you all! The last few weeks have been a whirlwind.
Let me take you back a little to explain how we got to where we are. In the fall, after school one day, JT fell asleep on the sofa. No big deal. I didn't want him to sleep too long because I wanted him to sleep that night. I went over to wake him up. He was a log! Not only was he impossible to wake up but his face was pale and his lips had virtually no color to them. I called the neurologist. We hadn't ever seen anything like this before and it was kind of scary. The neurologist said to watch him, it could be a sleep apnea thing... if needed we could always do a sleep study. It didn't happen again, so we just left it alone. Then in the last few months it began happening more and more. He would kind of zone out, not really talk to you and go ghost white. He couldn't support his weight, he wasn't really holding his head up well... Recently it happened while he was in physical therapy. He did fine for OT then when the PT came in he went ghost white, lost color in his lips, non responsive... she said it was possible that he was having domal seizures. She said that it is common for children to begin having the at the age of 4 or 5. Well, Jt's began at 5. We came home, he napped, then he threw up everywhere! I was SO happy he threw up! I thought, "super! It's just a bug". Then it happened again about a week later. I contacted JT's pediatrician and took him in to see her. She got in touch with the neurologist and they scheduled an EEG along with some blood work. It happened one more time before I could get him into the tests. Okay, so here we are up to date. One morning, I took Jt into the hospital for his EEG. He was amazing! The kid was talkative, chatty, kind, held conversations with everyone he came across. He was on his game! I thought to myself "well, this is a bust, this kid was AMAZING the entire time! Nothing!" The next morning at 8am my phone rang, I knew who it was without even looking at it. I got on the phone and my jaw dropped as he spoke. "So, looking at Justin's test results I want you to know I read them blind first." What he means by that is that he didn't know whose they were or the child's history. "When I first read them, I thought for sure it was an epileptic patient. He was in seizure the entire hour and a half he was hooked up." WHAT?!??! Are you kidding me?? He was amazing! I was with him the entire time! We were talking, laughing telling jokes... HOW could he be in seizure the entire time??! The doctor continued "At one point he had a 10 minute build up to what I would have thought would have turned into a major seizure, but it went away." I am telling you! I could not even guess when that 10 min was! I was and am simply dumbfounded. The doctor continued, we talked some more about what this all means, when to call EMS what could happen to Justin if we don't get the seizures under control... (Basically, he will lose all of the years of hard work in therapy and may never actually walk.)
Right now he is on seizure medication. Since we have no way of knowing WHEN he is having a seizure, I couldn't tell you if it's working or not. Right now the doctor doesn't feel we need more tests. Right now he wants to get them under control. So, he we are, watching him like a hawk, praying the medication works! So far, we haven't seen anything that concerns us, but let's face it, with 5 kids going in different directions all day long I don't sit and watch him constantly. We watch him, we check on him, we continue to make him work and learn but it's impossible to know if the medication is working, at least from my perspective.
In August we will see the neurologist again. He said he would sit down, show me the tests and talk to me about it all. I am praying Jake can take the day off and come with me, he always has great questions that I never think of. I am also hoping and praying we can find a sitter to watch the rest of the army so we can go and learn and focus. So, that's that and those are our prayers!
- The medication works and JT has no more seizures
- Jake can come to the doctors apt
- We can find a sitter to watch the rest of the kids
Thank you all for your patience and your prayers! We know Jt is in the Lord's hands!! There is no doubt about it. He is simply an incredible little boy who loves the Lord with all of his heart! God is going to use Justin for greatness, for His glory! This is just part of his journey, his story.
Thanks, be blessed!
