Liss[encephaly] is More

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

I didn't post an update in August because I was a little behind as the end of the month approached, so I figured I'd just wait until the next month. SO, we've got a 2 for 1 deal encompassing August and September. Beckett's coordinator through Washington's Early Intervetion program came to check in with us and update his IFSP (Individualized Family Service Plan- basically an IEP for kids not in school yet). We went through all his original goals we had set back in February when he was initially evaluated, and discussed what his new goals would be for the next six months in terms of gross motor, fine motor, speech and feeding. Some main goals he had included, sitting independently, rolling over, vocalizing wants, using open hands for play, and eating solids by mouth. Going forward, we will continue to work on vocalizing wants, using open hands for play, eating solids by mouth, and we will move on to working toward taking independent steps.  We've been working on B

We started the month meeting with his new Neurologist. We went over his and my medical history a little bit, how we learned about him being born with congenital CMV, and just kind of how we got to where we are today. She was wondering why we had an MRI before age 2, and I let her know that since he was having a sedated ABR, I wanted to get updated images so he would not have to be sedated again in a few months, and she agreed that that was a good idea. We looked at his new images and compared them to the images from when he was born, and I was finally able to see those images from birth. I remember his initial appointment with neurology back in March 2022, and his first neurologist really shooed us away. I could now see just how smooth his brain was at birth and it is wild to finally see. Some main takeaways from the updated MRI: -The images have more definition, but definitely still have lots of areas where he is lacking folds. -There is a part of his brain called the cavum septum whi

Beckett had his 15 month check up this month complete with the final round of many vaccines. He did great! She made sure we had gotten our appointments with all our specialists set up and the ball rolling with all those things, which we have! We will check in again with our pediatrician for his 18 month check up.  In the weeks leading up to Beckett's sedation, I was growing increasingly anxious. Since he was born, we've had a lot of doctor appointments. I have been there for every single one. Every appointment, every procedure, every study, everything. For this hearing test and MRI, I was not going to be able to go back with him and I was having such a hard time with that. Not only am I with Beckett all day everyday, but I don't like when other people watch him. I shed lots of tears, and I was very worried. All the nurses that were prepping him were so great, and so caring. They kept us together until the last possible moment, and I only cried a little bit! Thankfully, I ha