Praise God

We caught an episode on the EEG!  Like I said in my last post, Leeland has had an episode every morning since November 25th. Well, he didn't have one this morning. Definitely a low point for me. Kyle came home from work to watch Leeland so I could go to Hill's Christmas party at school. When I left, Leeland was down for a nap. When he woke up, Kyle was playing with him and he had a three minute episode. Kyle was able to push the button on the EEG that will allow the neurologists to pinpoint the time when they read the EEG. I have never been so relieved, but now I want one more. Praying to catch another one in the morning and to hopefully get some answers and help for our sweet boy.

What's Going On

Thank you all for all the comments, prayers and support. Leeland's last EEG showed no change from the previous EEG's. He has a "spike" on his left temporal lobe that has been present since birth. He did not have any "episodes" while hooked up though so we left with no real answers.  I think I said this in my last post but these episodes that he's having look like seizures. He has consistently had at least one a day sometimes more since November 25. After the EEG on the 6th, we left frustrated that the neurologist was not willing to do a longer EEG on him since most of these episodes occur  upon waking.   We  went to the Bell Center for our regular appointment right after his nap and while working with the therapist, he had an episode. I was able to video it and send it to the neurologist, practically demanding for him to do something. I had to go set up for Hill's birthday party and while my sister and Kyle were loading him up in the car to head to the party he had another episode. Overwhelming is an understatement. While at Hill's party we were able to coordinate with our pediatrician to put some pressure on the neurologist. We received an email from neuro that he agreed that the episode looked like a seizure and wanted to begin a seizure medication.  We headed straight from Hill's party to the after hours pharmacy at Children's so we could start medication that night.  He has been on the medicine for almost 2 weeks and there has been no change. He has an episode every morning within 30 minutes of waking and they all last close to 5 minutes and are completely heart wrenching.   He is normally pretty fussy and sleepy afterward.   I tried to give the medicine time to get in his system before I started harassing his neurologist again, so yesterday was my breaking point.  Neuro said that if these are seizures, he would expect there to be some sort of change in the appearance of the episode by this Friday, but in the meantime wanted to do a 48 hour ambulatory EEG. Basically he will wear it at home and there is a button for me to push when he has an episode.  Hallelujah! So, that's where we are now, sitting in the waiting room at Children's waiting to get hooked up . Please continue to pray for answers and our trust in God's perfect plan and timing. (Please don't judge spelling or grammar. Writing from a phone in a waiting room plus my ADD just really isn't the best combo)

Update

I thought I was going to get to do an update on all that's been going on the past few months, but instead I have a prayer request.  Leeland is continuing to have episodes that make us scratch our heads.  Because I am the only one who sees these "events" most of the time, it has been a heavy weight on my heart and mind.  I email and call his Doctors, I try to take videos, I forward those along, I go see new Doctors.  Basically, I have been shouting from the rooftops since Leeland was 3 days old that something isn't right.  Most agree that something isn't right, but no one can put their finger on it, and we have basically been pushed out the door and told to "wait and see" by most every one.  Well, Leeland had an episode yesterday in Target of all places.  I went to video it and of course my phone died.  I emailed his neurologist and told him exactly what happened.  I was basically told to ignore it.  I had a major meltdown last night because I feel like no one is listening to me and if they are, they aren't willing to do anything to help the situation or to help us find answers.  Today of all days, Hill's Birthday, Leeland began having an episode in the car.  I was able to capture the whole thing on video.  It was the first time that I feel like I actually caught what I've been seeing on a video.  All of his doctors agree that the video is concerning and they want to move forward with an EEG.  Hallelujah!  While EEG's are absolutely miserable for all of us, I am relieved to know that something is being done.  This will be Leeland's 4th one and I am dreading it for him.  He is scheduled for a work in EEG on Friday, which means we will be at the hospital all day, just waiting.  Hill's birthday party is on Friday afternoon, the movers are moving our storage unit into our house on Thursday and we are supposed to move in the rest of our stuff on Saturday.  PLEASE PRAY FOR US!