Skip to main content

It's gonna be May (for a few more days)

Oh man the last few weeks have been crazy! Me and the boys went back and forth to Houston a few times while Regan was gone. We returned home in time for Beckett's latest infant massage appointment where the therapist gave me exercises for his back to add to our regimen.

The next two weeks, Beckett had a few appointments that we had to reschedule since we got Covid. Lincoln and I both got it from Regan after he got home from NTC, and I was extremely concerned about Beckett. One of the most important things Beckett's doctor advised us of before we had him was our awareness to sickness, specifically Covid, so we have been extra cautious. Apart from Regan going to work, we really don't go out anywhere or see very many people in order to protect Beckett. I'm a homebody anyway, so it works for us, but I was very scared. When Lincoln came down with it, I made sure to keep him distanced from Beckett and not touch him, and I was wearing my mask because obviously isolating wasn't an option. For 10 days after our positive tests, we continued that and when our 10 days were up, Beckett was still healthy and not showing any signs of it 🙏🏼

We had our first physical therapy appointment and since we were recently recovering from Covid, we decided it would be best to have a telemedicine visit. His physical therapist showed me some different things to do with him that would help him work toward his three goals: bringing his hands together midline, being about to hold his head up while having core support, and turning his head equally to both sides. During our appointment, he was able to follow a toy while his head was turned to the left all the way to the right and not even two days later, he brought his hands together to his mouth. He's behind, but I feel that he's definitely going to be able to reach these goals!

Next up was his weight check so we can make sure he's getting the correct dose of his medicine. He weighed 11 lbs 11 oz! He also had his lab work done to make sure his white blood cell count was sufficient to continue his medicine, they also checked his liver and kidney levels. I love our lab and I'm so glad we don't have to deal with LabCorp anymore because they make the process so smooth. Since he has a variety of different tests done on his blood, they need a good size sample. While he may scream during the draw, it is over rather quickly. They have been doing it through his arm, not his foot, for two months now and it's going much better! Only a few more blood draws for him!

We had an appointment with Infectious Disease, and we went over Beckett's weight gain and blood work. He's gaining weight "beautifully", but his dose does not change this month. His liver and kidney levels were all good, and his ANC was 1120, which is good enough to stay on his meds! We discussed his upcoming follow ups with neurology, audiology and a few others. He also put in an order for us to see radiology next month and have another ultrasound done on his head to see the state of the calcifications in his brain. Dream scenario, they'd be gone, but if nothing else, hopefully there is not any more of them. He did inform me that in July when he gets off his valganciclovir, his CMV viral load will go back up to >3,000,000, which is what mine was when I was pregnant with him, therefore that's what he was born with. That means there are certain populations we will just have to stay away from for the two months after he finishes his treatment so everyone can be as healthy as possible!

We had our second Physical Therapy session, and I'm very grateful she now comes to our house to help Beckett work on different skills that maybe I wouldn't think to do with him. This month he brought both his hands to his mouth which is a big step in his development. He doesn't do it frequently, but he is capable. He is holding his head up so well and I am so proud of him! We worked on some great exercises to help him bring his hands together, some exercises to help him keep his head looking straight rather than arching his back and looking behind him, and even some stuff on his tummy to help strengthen his core and head control! I'm very excited to keep working on this with him and see how far he can go!

This weekend Regan is going to Oklahoma for a bachelor party so me and the boys are going to go to Houston for my Grandpa's 90th birthday! We are very excited to see our family in Houston, before returning home for some big appointments in June!



Lincoln's face in this photo is so good


Comments

Post a Comment

Popular posts from this blog

Year end close out deal

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
Post a Comment
Read more

Little fall update

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
2 comments
Read more

The final countdown

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
Post a Comment
Read more