Its April, Fools

We have finally started seeing the sun a little more this month and have been able to enjoy a lot more playtime outside.

Beckett had another swallow study done this month because myself and his feeding therapist were worried about the possibility of him aspirating based on all the different symptoms he was experiencing at the beginning of the year, but it took a few months to finally get an appointment. He had a swallow study done in July 2022 that was completed by a radiology technician, and it showed essentially that he had a delay in his swallow. This time, it was being interpreted by a speech therapist, while the images were taken by a radiology technician. In the study, I brought his usual Kate Farms formula, prune juice/water combo, and a banana puree from home. Kate Farms is a thicker liquid, so he's been able to drink it just fine, but anything else he drinks has to be thickened. During the swallow study, we started with the juice/water mix without adding any thickener to see how he was able to swallow that consistency on his own. Then he drank some thicker juice, some Kate Farms, and some banana puree, all to see how well he was swallowing it. My main focus during the study was just to get him to swallow. I was not paying attention to the screen, because I knew we would go over the images once it was complete. After all was said and done, the tech (who was capturing the images) left the room so I could go over the results with the Speech Therapist. She showed me some images to see how exactly he was swallowing and I could see the way the liquid pools at the back of his throat at each gulp when he is drinking thicker liquids. He needs the thick liquid because he not only is at a high risk for aspiration, but it's as if in his mouth, he has to have the thicker stuff in his mouth for his brain to recognize that he needs to swallow. When the liquid is thinner, it can slide down his throat easier on its own without his brain recognizing that there is fluid back there and he needs to swallow (therefore he is risking aspirating) Its imperative that he stay on thick liquid, but he can practice drinking water for play. (I will not be practicing that because I know he aspirates and he just gets even more sick and that is not fun for anyone involved).

Regarding the swallow study results, he has a follow up with ENT so they can put a scope down his throat. In the swallow study, it showed that he his laryngeal structures (which keep food from going into his lungs) are smaller than normal. This could be because he is globally underdeveloped, but we need to see if that is something that can be causing his swallowing difficulties. It's mostly informative, and if they are smaller than normal, hopefully they will grow stronger as he continues to develop, just like the rest of the muscles in his body.

*not sure if all that information was confusing, but basically he has a delayed reaction with his swallow, needs a lot of information in his throat in the form of thick liquid/puree to trigger the swallow reaction, and when he doesn't swallow quick enough it causes him to aspirate which could be because the structures in his throat are smaller than normal. 

Beckett was chosen from his clinic to participate in a DMI (Dynamic Movement Intervention) masterclass. It was a course training a bunch of therapists from his clinic in this type of therapy. They would practice all the different techniques on dolls during the day, and then in the afternoon we came in so they could practice on Beckett, and a few other kids. DMI is going to be a great addition for his therapists to use. 

He has finally reached the 35th percentile again, which is what we've been aiming to do since we moved here and his weight gain issues started. In the last week or two, he has started sleeping so much better, and that is all hugely because of his nutrition. It's wild to think that it's been 15 months without good sleep! He is receiving everything he needs from his Kate Farms formula, with the addition of purees. Now that he has reached his weight goal, his nutritionist wants us to start weaning back the formula, to put more emphasis on his purees, but since we are finally getting sleep, I am apprehensive to do that. The main concern would be that he gets too big for his mobility, but at this point he's doing great! With that said, I am going to wait a few weeks and see how he continues to gain weight, then decide what to do with his nutrition. 

Speech therapy has started bringing an AAC (Augmentative and Alternative Communication) device to give him another way to visualize commands, and point on the device to try and communicate. Its very new, and I don't expect him to be choosing the correct command immediately, but it can be another option down the road. His favorite way to communicate is still through screaming "ahhhh" so he is heard by others. Its especially funny when there is a lot of noise in the house from all of us talking, and then he just chimes in with his own input because he's not quiet about it!

Since his PTs and OT are all trained in DM| now, they are able to use it in their sessions with him every week. He has made such great progress! When he isn't wanting to be held by me, he is wanting to be in his walker so he can move everywhere. When he is laying on the floor, he has been trying to pull himself up on things, but doesn't have the core strength to get himself up quite yet. He got fitted for his gait trainer and that should be in by the summer so he can start using that to walk instead of the walker, as it will force him to use to correct movement, and not let him sit into it as much. 

 

Next month we have our much anticipated sedated ABR and MRI. I'm very nervous that they are going to say that Beckett is in fact losing his hearing, but that is a problem for another day. For now, we are going to enjoy our much deserved sunlight!