Liss[encephaly] is More

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...

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 ...

It's been a minute since I shared an update on Beckett. We're finally getting some nice weather here and are able to spend more time outside comfortably,  so that's been a great change in the last couple weeks, as we are spending our last weeks here in Washington.  After initially receiving his hearing aids, we noticed a lot of high pitched noises from the aids, so I brought it to the attention of Beckett's audiologist. After being assured that was not the way they should be, we went back in and got some new molds created, and those came back a few weeks later. Thankfully, they no longer were making any noises. It's amazing the night and day difference he is when he's wearing them. When he's not wearing them, he's very quiet, much more docile, his arms are up higher as he's compensating for his lack of awareness to his surroundings. When he's wearing them he's much more vocal and engaged with his outside world. This change is he most noticeab...

For a long time now I've been wanting to put a medical binder together of all his paperwork from specialists, testing results, anything that may come in handy for someone else to have but also a great resource for future reference. As I was online printing off all the documents I wanted to put into this file, I came across this list pictured above; his diagnosis list (and not even the most updated one). When you look at this list, and you compare it to who Beckett is today, he is far exceeding anything I could have predicted based on his extensive diagnoses.  His first trip around the sun, I truly would have thought we would be lucky to get a decade together earth side. He had so many hardships, his EEGs were showing seizure activity, he wasn't progressing much in his physical development, and it was quite taxing on us. One year ago, he couldn't sit independently, and was just barely rolling over. It 's interesting because on one hand I'm grateful for all these diag...

We had the absolute best visit with Erin and Charlie, complete with game nights, Lego building, human playgrounds, ringing in the big 2-8 with my favorite local restaurant (and people), and a Thanksgiving turkey that was less than delicious. Shortly after they left, my mom came and she helped with all the things! She watched the boys so we could finish our Christmas shopping, and forced us out on a date (which I admit its never easy for me to leave Beckett, but we don't have the chance to do it often, so we try to take advantage.) Beckett is so motivated to move. He has taken steps independently from me to Regan across the playroom, can stand on his own for about 30 seconds, and has even gotten himself up to standing from sitting a few times. He has been at this spot developmentally for awhile, but he is clearly driving this ship and has his own path he's forging.  His main choice is to crawl everywhere, so we try to keep our shoes off in the house as much as possible. Since Be...

He's still doing all the same great things in PT and OT. He's trying so hard to stand independently, loves to hand us toys, loves to climb into our bench seat at the bay window and watch out the window, still walks along the couch holding on, and is even starting to take a few independent steps, but understandably very nervous! His therapists feel like he's sort of plateaued in his physical development for a little bit because he is becoming more cognitively aware. He's starting to understand cause/effect in play and he focuses so much during therapy on those things while being in difficult physical situations to work many things as once. We're continuing to work with his AAC in speech, and he really enjoys touching the screen, mostly for play, nothing for communicating his needs or wants. He does understand what we are saying though, and that's clear. Regan frequently asks for kisses and he will bump his head into Regan's each time he asks for one. He clear...