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 noticeable when we are out in public for sure, as there's more that his senses are able to take in.
When he started walking in January, we went down to PT once a week instead of twice. One less appointment a week, woohoo! He's been doing his PT/OT at the new clinic that's closer to our house than the previous downtown location, and he is absolutely loving it. There's so much there for him to explore. We love our Tuesday mornings with our therapists. It's a little for him, and a lot for me I think! 😉
He's been drinking his Kate Farms from a bottle since I stopped nursing him, and we've never made progress beyond a bottle and he can't drink from a bottle forever. With that said, we're trying to get him to put his mouth around a straw, and drink but we've made little to no progress. One thing I've noticed about him is all of his teeth have poked through the gums but they aren't continuing to grow down. After doing some research, I brought it to the attention of his therapists, and they agreed it's most likely from his lack of oral stimulation. His OT ordered a device that is similar to an electric toothbrush just without the bristles, and by massaging his gums hopefully it'll help his teeth come in more. She also recommended asking his dentist about his teeth development and seeing if something else is going on, because the fact that his teeth aren't coming in could be preventing him from progressing in his eating. I don't feel in my gut that that's the cause, but it doesn't hurt to ask!
In Speech, we tried out using an AAC (an iPad with a program for him to communicate by touching images on it), but he wasn't very receptive to it. We gave it back to the clinic, and maybe we'll try to introduce one again sometime, but for now he's using his buttons he presses when he wants his bottle, and when it's time for bath. We'll also introduce one for bedtime soon, since he's grown accustomed to pressing these and getting the exact result. He's also got his famous "ah" sound for anything he wants to say.
Vision therapy continues to come see him, and gives great ideas for him to compensate for where he's lacking, but he's grown to really understand where he can see, and turns his head often as a result. We're working on getting him to look down as he can be unstable around surface changes since he can't see them.
We've been meeting with his hearing teacher as well, and it's great for another play space for him to explore. We've been trying to introduce a few signs (bottle, shoes) as those are our most frequently used words he understands.
His amazing Physical Therapist is also a professor at a local university. She's teaching a core course on pediatrics, and during the lecture week they discussed Cerebral Palsy, she had Beckett come in to the clinic for her students to see what he's doing, and how Cerebral Palsy effects him personally. We discussed his diagnosis, and how we got where we are today. The students were able to ask questions about his case specifically. It's always enjoyable for me as his mom to see people genuinely interested in him.
Stepping Stones created a commercial for their website, social media platforms, and as a way to encourage parents with a recent diagnosis. They asked 4 families to participate and we were one of the lucky ones. They filmed Beckett in his natural environment in the clinic, and interviewed us and his physical therapist. Beckett is a fan favorite over there, and we were so honored to participate in this project!
I follow the Lissencephaly Foundation on Facebook, and they made a post looking for parents of Liss kids to assist in a project. They are making a Packet of Hope, to give to the parents of newly diagnosed kids with their testimonies. I commented and offered to assist, and was one of the chosen parents so I will be putting together a page about Beckett and how this diagnosis, while life changing, is so much more than what you read on the internet.
CMV Awareness month is in June and there is a worldwide virtual walk on June 29th. We will be having a meet up with family and friends at a local park to walk the 5K, and end it with a treat for everyone!
We are now 7 weeks from the big move. It was so hard to leave Texas, and I didn't think it would be hard to leave Washington, yet here we are 🤯 We are getting all the logistics planned out. All the major things are taken care of, but moving all of Beckett's care is daunting. He is going to get back into Early Childhood Intervention, and will have to be reevaluated when we get to Texas. That's probably the most critical piece because that is who will help him transition into PPCD when he turns 3, which is only 6 months after we get home. I've decided what pediatrician we're going to use as well, and now I am working on scheduling all his specialist appointments as quickly as I can so we aren't too behind for the rest of the year! Texas, here we come!
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