Skip to main content

EEG #3

Beckett had his third EEG one day last week, which I went into completely fine. I knew what was going to happen, and I was ready. I fully expected to receive a message from his neurologist shortly after saying "great news, normal EEG!" Well that's not what happened.


I know there are many people who care about Beckett and are curious how he's doing. Lately, I've been putting posts together at the end of the month that are a complete summary of everything he's faced in that month. I feel like with this, it needs its own post because of the information that we have. Part of me doesn't want to put it out there because then it's real and people know, but the other part of me wants it out there because more people can pray for him.


This morning, I received the results from his neurologist. She told me they saw seizure like activity, and she wanted to know if I had noticed anything at home, which I have. From someone who knows nothing about what a seizure looks like, I have seen things in Beckett that I think might be but at the same time, I was never sure because I have never seen it before. I've told Regan multiple times that I feel like I'm seeing it and that I'll bring it up at our next follow up (at the beginning of December), but this EEG gave me confirmation that what I'm seeing is in fact seizure activity.


The next step is to complete a 48 hour EEG at the children's hospital which we will be getting done as soon as possible. The EEGs that he's had are such a snapshot being that they're only one hour long, so by doing a 48 hour one, they'll be able to see more of what's happening in his brain to see if they can catch an actual seizure and start him on an appropriate medication. 


Seizures are one of the more serious parts to his diagnosis and it's something we've been warned about since we were in the NICU, but I really didn't believe it would happen to him. He's almost 10 months old and there's not been any "obvious" seizures so I thought we were out of the woods. That was naive of me because I know we are never out of the woods. Having this result is really difficult, and today was a hard day, but we are on the right path to getting him the help he needs.



Until the end of the month...

Comments

  1. Could not love you or Beckett any more than I already do.

    ReplyDelete

Post a Comment

Popular posts from this blog

Ketchup

Lots of things have changed in the last 6 months! We left our therapy clinic and it was heartbreaking. All our therapists in Washington have been monumental in Beckett's journey and there's no way he would be where he is today without them. We left all our neighbors on Dakota Ave that turned our time there into the most memorable of our military time. We packed up our house, and headed home to Texas! The first six weeks being in Texas were a whirlwind between airbnbs, hotels, families houses, while trying to find a house to buy, and Regan starting his job. So during that time I didn't try to accomplish anything for Beckett beyond getting both boys established with a pediatrician. Most of the other doctors Beckett needed to get into had to be sent referrals by his pediatrician anyway, so that was the best place to start. Their pediatrician is very sweet, but we've had a few hiccups with her office and their knowledge of Beckett's diagnoses which has been quite shocki...

Three-esta

In November, we had Beckett's Special Education evaluation. It was quite a crowd. In addition to me and Beckett, there was the Diagnostician, a Physical Therapist, Occupational Therapist, 2 Speech Language Pathologists, 2 Vision Teachers, and a Teacher for the Deaf. Prior to this meeting, we were sent questionnaires to fill out regarding Beckett's development so they had some sort of idea about what where he was at when they did get to meet him.  After their introductions, all the specialists observed Beckett's movements, and interactions, while they all took turns asking questions about his development that were specific to their individual evaluations. I answered what felt like never ending questions while they all fawned over Beckett, and they sent us on our way. As the diagnostician was walking us out, I had a little check in the see if she thought he would qualify for Special Education services. She was nodding yes, as she made sure to tell me she'd let me know onc...

NAPA Knows How

Our time at the NAPA Center was truly incredible. I had seen online a handful of accounts I follow of kids doing intensive therapy, and I was definitely intrigued but I wasn't sure where to turn. A fellow Liss mom had mentioned the NAPA center so I went to Google to do my research. At the time, registration had closed to get into an intensive session for 2023, so we were waitlisted, which was totally fine since we were still in Washington and getting to a session wasn't really feasible at the time. When registration for 2024 opened up, I applied, and waited to hear. A few weeks later I got the email that he was selected to attend an intensive session in Austin the summer we arrived back in Texas, which couldn't have worked out better.  We figured out how we were going to make it happen between work, school, and getting settled into our new house. One of my college roommates that is still a dear friend lives in Austin, conveniently about 20 minutes from the Napa center, and ...