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Kasai’s Journey

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Kasai’s Journey

Welcome to Kasai’s Journey! Catch Updates here! Kasai was born at 24weeks 0days! Weighing 1lb 3oz. On January 1st,2024. He Spent 395 days in the NICU. Our fighter🩵💙

And has fought for his place here earth side every single day since he was born.

04/20/2026

April 20th, The appointment today went pretty well. They are all very pleased with how he is doing! Pulmonary wants to take him off his sick settings and wean him back to his normal settings now that we’re in the clear. His pulmonologist also recommended us decreasing the amount of water in his balloon that is cuffing his trach,as long as the vent doesn’t alarm. Which will hopefully allow him to try and push more to make noises. They also took a trach culture today to see what he grows when he’s not sick. Just to check on his trach. They also ordered labs,mainly standard labs…like blood gasses,electrolytes and vitamin levels. We will get those when we go to get his labs for this new medication from neurology so he’s not getting poked so much. However his pulmonologist also ordered a sweat chloride lab,which has to be scheduled. This lab is just precautionary as Kasai has grown a bacteria in the past that is on the rarer side to grow unless you have CF (Cystic Fibrosis). She doesn’t think he has CF,as it’s standard testing when a baby is born and he didn’t have that marker then. But with him being premature and having other lung diseases they want to just make sure again. All in all,every team seems to be think Kasai is in a really good spot besides the seizure stand point which we are actively working on. We’re excited to start the wean process again and get him off these sick settings. We will let you all know about labs when we get them,as well as his culture. As always,Thank you all for your continued love, support and prayers.

04/17/2026

April 17th, Yesterday Kasai had a Complex Care appointment. Not many changes just leveled out his feed as his “diet” was working so now they want to give back again. They added 5oz of formula. He is 31lbs and 2ft 9in! Our boy is getting big. It’s so crazy because around this time last year he was short and stubby…now he’s growing tall just like his dad! Complex Care is very pleased with how he’s doing and will follow up again in August! He has his first Aero-Digestive appointment Monday which will include ENT, Pulmonary and GI. They want to all meet together to make sure they’re all on the same page about Kasai’s Care. We’re interested to see how that goes. As for today he got a bath,fresh trach ties and is now chilling outside for a little bit! As always thank you all for the continued love, support and prayers!

04/12/2026

Outside enjoying the nice weather on his travel vent with no tank!!! ❤️

04/11/2026

April 11th, Just thought we’d share some updates about how it’s going with his medicine change also a few random pictures of him! He’s been a bit more tremory, feisty/moody and picky with touch (not really wanting to be messed with too much). However he has had really good awake periods. Still taking naps sometimes lasting a few hours but some lasting 30mins-1hr and having 4-5hrs awake in between. Which is way more awake time then we experienced before. He will be increasing the dose again tomorrow, so we will see how the next two weeks go. Then we will increase it for the last time on the 26th. And he will be off the old med on may 10th as long as the wean continues to go well! He’s also had a few issues with his oxygen saturation for a few weeks on and off BUT we’ve had the concentrator off since 6pm yesterday!! Slept through the night without it on and has been fine without it on all day today. So just vent settings for going on 24hrs!! Another really good sign!! National Seating & Mobility also reached out to us about his wheelchair/stroller and we will be doing his final fitting on May 5th!!! If everything fits him properly we will be bringing it home!! Our boy is doing amazing and we can’t wait to keep getting him these new tools to help!! Next up talking about a stander!!! As always, Thank you all for the continued love, support and prayers!

03/26/2026

March 26th, Kasai’s Neurologist called us today with some news about his EEG. Last time Kasai had a 24hr EEG was back in august when he was on just Keppra and the results from that were that he had 20 seizures in that period of time which is still more then they would’ve liked. Which made them add on Trileptal later in October. He gradually increased that med over time to the dose they wanted him on and then we had this repeat EEG on the 24th of this month. In late January we had an incident with Kasai that we had never seen before and sent in some photos and videos that we could get thinking it was a bigger seizure that we had never seen. His doctor at the time couldn’t rule it out as she didn’t see the full thing. Instead we scheduled this 24hr EEG to check on his seizures bc of that incident as well as wanting to see if the Trileptal had helped. So fast forward to the phone call today,she told us they had seen at least 80 seizures from 1pm-8am. We decided to come up with a plan to try a different medication in hopes that it can help bring the number back down. Or we will start losing more and more interactions with him. We decided to try a new med called Valproic Acid. We will slowly wean his Trileptal while slowly increasing this new med. It has its own risks as Trileptal and Valproic Acid don’t always do well interacting with each other and can mess with his liver function and blood count. So we have to monitor him a lot during this process and he will be getting labs done after a month of being on it to make sure everything is looking well. She also wants to repeat a 24hr EEG in 3 months to check on the seizures. That will give his body enough time to adjust and go from there. A lot of this makes more sense on why he’s been so sleepy on and off. However it’s been really difficult to tell because he’s also teething which as many of you know kicks ur butt. It’s gonna be a long few months trying to figure things out but we’re hopeful and hope that we can help him get better and have less seizures. Unfortunately not what we wanted to hear but we are glad it was caught and that we can try other things to help. Thank you all for the continued support,love and prayers. We will keep you updated!

03/25/2026

March 25th,Kasai is home! They didn’t say much, just waiting on a call about the results from his EEG. He had a long few days and is now home sleepy. Gonna let him rest some and then give a good bath,fresh trach ties and pjs when he wakes up! Kasai’s Meemaw also got him a sticker for his feed pump! Cute little bluey characters in the background,we love it! We will make an update when we get a call! Thank you as always for the continued love, support and prayers!

03/24/2026

March 24th, We came to columbus today for Kasai’s 24hr EEG to check on his seizures. We will be staying overnight and be back home tomorrow as long as everything goes well! They will have rounds in an hour just to check in and go over what we’re doing and how’s he been since the last one. Hoping with the second med they added a while back that they’re more controlled now. But we will see! Thank you all for continued love,support and prayers!

03/20/2026

First time in the big bath with his bath chair🥹
Our baby just keeps getting SO big😭.

03/18/2026

March 18th, Kasai seen ENT today! Just wanted to check on his stoma sight and find other ways to fight his breakouts. They gave us another type of silver meplix to try the next time his neck breaks out. They also peaked in his ears an said they’re looking good. We also talked about scheduling an appointment over the summer to meet with Pulmonary, GI, ENT, OT/PT/Speech therapy as well as a feeding specialist to just all try and get on the same page and find better ways to help Kasai. So they will be calling to schedule that. While we were in columbus we also stopped at National Seating & Mobility to pick up bath chair!! We are so excited for this,it’s gonna be a big help during bath time. His wheelchair is set to be assembled on the April 8th,so we’re hoping to get that by mid april! We also got to try out Kasai’s new feed pump holder his Meemaw got him. It works so much better! Even holds a syringe to pull air off his stomach so we don’t forget it! Lots of big things and we’re so excited to get new equipment! As always thank you all for your love,support and prayers!

03/02/2026

March 2nd, Kasai had his Yearly GI follow up on to look at his g-tube! We got to see one of our favorite Surgeons/Doctor…Dr.Thakar! He always checks on more then Kasai…Even told us to tell all the grandparents hi. He’s the sweetest person ever. He said everything looked good! They didn’t have to change the size of the tube or anything just changed it out because they remeasured it. All in all it was a good visit! Thank you all for the continued support,prayers and love!

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