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.

01/09/2025

NICU Awarness Month!! 🥺🩵

Enjoy a picture from each month since Kasai was born. Watching him grow has been such a blessing! Kasai was born at just 24weeks weighing 1lb 3oz and is now 20 months today (15.5 months corrected), weighing in at 30lbs! He’s had a total of 14 procedures since january of 2024 and 2 admissions since january of 2025. He’s been in PT & OT since he left the NICU. Has a VA shunt,a gtube,and a trach/vent set up. He has seizures that are being treated and the meds are working! He has BPD which is being monitored through pulmonary. We’re waiting to discuss his sight and hearing. He has hand splints and feet braces to help correcting. Kasai also definitely has quite the sassy personality if you’ve ever met him! With everything he’s gone through,he’s stayed strong and beat so many odds. We truly couldn’t be prouder as parents or more grateful to have our sweet boy. Thank you all for continuously showing support,sharing posts and making sure we know there’s always love for kasai. We started this page to involve family and friends that live far or weren’t able to see him. We’ve since then grown a small community for Kasai, one that we surely appreciate. We’re truly blessed to share our journey and we’re thankful for you all!

31/08/2025

August 31st,Home sweet home at last❤️

31/08/2025

August 31st,Sorry for the late update we ended up stuck in the hospital a little longer then expected. Kasai ended up dropping his sats friday morning to low 80s and needed bagged to help come back up. They ended up running some labs and messing with his vent some to see if they could figure out what was going on. As he also had a higher heart rate. Turns out he was fighting a trach infection similar to the one he had back in april,which is very common. He was started on antibiotics and has been doing better since! All other labs and tests came back normal! Good news is,his seizure meds are working as the EEG showed no sezuire activity! We’re not sure what the spams are from,though we have an idea. Back in late june early july,we seen the early development clinic and they did bring up cerebral palsy but said it was to soon to diagnosis him. We’ll definitely be talking with everyone again and trying to help kasai manage the best we can! Thankfully we are on our way home today! We will be finishing this weeks antibiotics and talk with pulmonary about when to see them again soon. Unfortunately due to being in the hospital we missed our complex care appointment so we will have to reschedule it as well because we have a lot to go over with them. Again sorry for the late update it was just a lot to be hospitalized again and trying to get answers. Thank you all for the continued love,support and prayers!!

28/08/2025

August 28th,We had an early columbus trip today as we had his 24hr EEG admission this morning! He will be here until tomorrow around 11:30am. Hoping to get some answers and see if we have to make any med changes. He was awake most of the car ride,fell asleep 15 mins before we got here and slept through most of the EEG wires being placed. Of course he’s not a happy camper,being back in the hospital and having the extra wires. But it’s only a few hours! Don’t miss the alarms here though. Tomorrow we meet with complex care as well,to go over a bunch of things and check in. Hopefully all goes well tonight & tomorrow. Thank you all for the continued love,support & prayers!!

23/08/2025

August 23rd,Kasai practiced some weight bearing in his jumparoo! Had his braces on for some more support and did very well!! He’s also been very interested in some screen time,trying to limit his times but he enjoys it. He’s been watching Leapfrog learning shows, bluey, and some movies every so often. He really loves shows with songs and stays wide awake for them. However we also have noticed more seizures while he sleeps and they’re hard to pin point when he’s awake so we called neurology. They would like us to come to do a 24hr EEG on the 28th. He’s also been more sleepy and we don’t know if he’s growing,catching something or the seizures are wearing him out. Thankfully we see complex care the day after his EEG to make sure we’re covering all our basis! We’re making strides but how can you make strides without a little push back? We will sort this all out next week and give an update! All in all we couldn’t be more proud of his progress! Thank you all for the continued love,support and prayers❤️

17/08/2025

August 17th,Today we tried some sensory learning! We tried headphones with his leap frog learning videos playing at a good volume! He seemed to do pretty good with it but was very confused,staring around trying to figure out where the other sounds went. As they have noise cancellation. Then we added some toys to his toy bar. A ball with different textures,beads an two different sounding bells! He played in the chair for about an hr,with his feet braces on and uncuffed (no water in the balloon in his trach). He did really well with that! We finished our day off with a nice walk at Maumee Bay,which he fell asleep! But it was a good temperature with the breeze by the water and we brought his fan to keep him comfortable. All in all,today was a pretty good day! Kasai definitely had a good weekend! Thank you all for the continued love, support & prayers!!

17/08/2025

He likes to hear the water 🌧️

17/08/2025

August 16th,We talked with Kasai’s OT & PT about his braces! OT will be in charge of his hand splints which she wants him to wear mainly when he’s sleeping for now because he’s tightest when waking up and when winding down. We will work on wearing them during the day for 15-20 mins at a time as he gets more used to them. PT is in charge of his leg braces and would like to start with 20-30 mins 2-3 times a day (even if he falls asleep with them on like he did in this picture). And we’ll gradually work our times up and maybe have them on while he sleeps as well for the same reason as his hand braces. He’s definitely adjusting to them and if he looks uncomfortable or his heart rate gets high they did say we can take them off so he can calm down. He’s done pretty well so far and we’re pretty proud of him! We can’t wait to get to a point of weight baring on his feet which we have started as he’s shown interest in trying to put weight on his feet. Which is a great sign! But with everything he has going on it’s gonna be tough journey. He’s definitely come so far and we truly couldn’t be happier. Thank you all for the continued support,love and prayers!

11/08/2025

August 11th, Kasai got his hand/leg braces fitted!! He has two different pairs of leg braces,they’re pretty similar. One just has two pieces which makes it thicker so he can’t push his toes down as easily,the other is thinner. He has one pair of hand braces which will help him keep his hands less tucked. They also came with attachable rolls which can be placed in between his hand so he can practing grabbing. It also helps open his hand a little more. We are excited to talk with his OT & PT about when we’re gonna use them and how often! We see both of them this week as well. We’re very proud of how far kasai has come and excited for all the new equipment helping him thrive just a little more! Thank you all for the continued love,support and prayers! ❤️

05/08/2025

August 5th, Kasai has been having amazing awake periods!! We had him up for 5 hrs straight the other day and he’s been doing good with taking cat naps and then bouncing back ready to move, stretch and play! Of course he never misses a 5pm nap though! We also went to his Pediatrician the other day and everything looked good! Kasai has been stable been between 29-30lbs,since they took away his 1am feed which has been good progress for his weight chart/curve. He’s definitely going through a grow spurt. He’s 30.5 inches!! Still no teeth,we plan to talk to complex care on the 29th about his teeth and where to go from there. He doesn’t like to chew on anything so i think that’s a big road block. But we will get it sorted out! We also plan to talk to them to see when we’re going to see the eye doctor again as he hasn’t seen one since his last eye procedure. PT,OT and early development as well as us are curious about how much he can see. We believe he can see some but don’t know how much. We’d also like to schedule a hearing test again and see how that goes. All in Kasai has been working pretty hard and we are super proud of him. Thank you all for the continued love,support and prayers❤️

01/08/2025

Some pictures from his 1st Zoo Trip🥹❤️

01/08/2025

Zoo🥹🫶🏼

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