Kasai’s Journey

02/27/2026

February 27th,Kasai had a Neurology follow up today. We spoke about his meds and activity level today. A few months ago complex care talked about wanting to wean his diazepam and we waited and wanted to talk it over with his Neurologist. She thinks it’s good to try to wean it and see how it goes to help with his fatigue. However we have to watch for signs of increased irritability or stiffness as those are the two main signs he may need to stay on it. Luckily it hasn’t been weighted adjusted since the NICU so we’re hoping it doesn’t affect him to much. We will discuss this with complex care in a few weeks. Today they also weight adjusted his Keppra and want to do a repeat overnight EEG within the next couple months. Also Kasai weighed in at 33.7lbs and he’s 2ft 9in!! Our boy is getting big!! Everything else is going well,now we head home! As always thank you for the continued love, support and prayers!

02/14/2026

Happy Valentine's Day from Kenzie and Owen - a family that has a lot to say about the impact of Valentine's Day and RMHC ❤️ "We're celebrating the three of us making it past more than one Valentine's Day. We've had three together, one of which we celebrated outside the Ronald McDonald House."

It's Valentine's Day and we still haven't hit our goal of raising $5,000 for the families staying at our house. Your donation helps support families like Kenzie and Owen. As we hit different milestones on our way to $5,000, we will be sharing sweet surprises with the families staying at Ronald McDonald House Charities of Central Ohio.

If you're willing and able, help us share the love by donating today! Donate with the link below ❤️

Donate Here: https://bit.ly/3Mk4tyP

02/14/2026

Happy Valentine’s day!! Kasai loves you all❤️

02/04/2026

His procedures went well! They didn’t have to do anything extra and they did not feel the need to place ear tubes today! His hearing test was the same as last time. They would still like to try to do a behavioral ear test on him in 6 months,hoping to get more answers but for now they will just go off of how we feel about his hearing since we are with him everyday. He definitely does respond to sounds and noises,they just can’t see how much he takes it with all his brain injuries. He recovered well and is back in our care. I also wish nurses would take their time sometimes, Kasai got blood all over the bed and needed cleaned up by me because the nurse didn’t apply pressure for long enough after taking his IV out. Other than that everything was good today. We look forward to sharing more updates when we can. Also the 2nd picture is pretty cool it shows u where his lungs split to themselves. Thank you all for the continued love,support and prayers❤️

02/04/2026

Kasai just went back for his procedure! They said it all shouldn’t take to long,little under 2 hours. He was wide awake this morning and then realized he was in the hospital (second pic 😮). He really stared at the hospital crib like “i know you guys did not bring me here again”😭. We will update you all when he’s done! As always,Thank you for the continued support,love and prayers!

02/04/2026

Just an update before we head to bed. He took a bath,did trach ties and started his feed while falling back to sleep still with no extra oxygen! He has sat 97 and above occasionally dropping to 95 then coming back up over the 3 hrs! We’re gonna keep trying this with him as he tolerates it. For his first time,3 hours is amazing and we know he could’ve kept going but we have to get ready for bed. We couldn’t be prouder of him! He didn’t have his pulse being monitored in the bath but as soon as he got out we put it back on and he was still satting at 97!! Can’t wait to talk to pulmonary and keep working towards goals!!❤️

02/03/2026

February 3rd,Today we did OT at 7am,PT at 1pm and then jumped in the car and headed to Ronald as Kasai has a procedure tommorow. OT was good,he was wide awake and was very interactive today. He’s becoming better with Oral Stimulation even while being mad about his teeth buggin him. PT was also a good session,he was a little on the sleepier side but he did hold himself up today better then has before!! (first picture) The drive was long as always but we made it! He of course slept the entire time and is knocked out still. Tommorow he will be having a routine Bronchoscopy,he will have a sedated hearing test and he may possibly get ear tubes. His procedure will start around 9am and we’re hoping for the best! We also noticed he’s been satting pretty well again 99-100% on 1 liter of extra oxygen. And so we were told we could turn the concentrator off and see how he does for periods of time without the extra oxygen. Granted he is on sick setting until sicke season is over but there not much higher then his regular settings. So we decided to try it as he’s setting at 100% and can’t just sit at 100% and he has currently been satting at 99% for 17 mins and going without that extra 1 liter!! We’re excited to keep doing these trials and see how he handles them and hopefully go back to normal setting soon and continue to do trials. This is very exciting for us!! As always thank you all for the continued love, support and prayers.

01/30/2026

A year ago today Kasai graduated the NICU, after a long 395 days. 361 of which we stayed at Ronald Mcdonald in columbus to stay close to him. Ronald Mcdonald was once just a place we heard of and then it became a place we needed. They welcomed us with a room to take breaks in and get rest away from the monitors. A place to shower and take care of ourselves while taking care of our son. They became a HUGE part of our life and still are! Today we decided to give back. Blankets, toys, food, drinks, pop tabs and more. Thank you to all who donated and all that helped out. We truly are greatful for the friends and family that helped us give back. You guys were a huge part of why today was able to happen. Also a big shoutout to the Northwood VFW 2984 for donating money as well as other things. We truly couldn’t be more blessed to give back.

01/24/2026

January 23rd,We traveled to columbus today for a seating and mobility appointment to discuss the options of seating for his wheelchair/stroller. Today we met with a group of people who specialize in the seating and who all collectively wanted to make sure that we’re making the right choice for Kasai. They all agreed and now we wait for it to go through insurance. We should know if we’re approved for it in 6 weeks and then we will have the equipment in 2-3months after approval. They will appeal is case if he isn’t approved but with his medical complexity we all don’t see them saying no,as it’s to better him and his condition. As always thank you all for the continued love,support and prayers❤️

01/23/2026

Yesterday, 2 years ago i held Kasai for the 1st time. After 20 days of life,he finally got to be embraced by my warmth,my love and my heart. I always heard holding your baby for the first time was a moment like no other….after 20 long days we both finally had our moment and it was the most special feeling in the whole world. The second picture is from after his last shunt surgery when i finally got to hold him again after letting him rest for a few days. And the final picture is one of us from last week. I couldn’t be more grateful for this little boy. The strength he poured into our lives,The happiness that he created in our hearts and The love that surrounds him. He was our blessing in disguise and we couldn’t more lucky. Your fight is forever our fight sweet boy,mommy loves you!❤️

01/15/2026

Share if you can,donate if you can! Anything and everything is appreciated!! This family needs all the love,support and prayers they can get. Their baby was only 3!! They are asking for help to cover expenses to help lay their baby to rest. She was in the hospital for a period of time,which we all know is a lot as is especially with medical bills. Praying for this family as they navigate this difficult time. Rest Easy Baby Girl❤️‍🩹

My name is ShaRon, and I am reaching out on behalf of my beloved granddaughter, Zhari… ShaRon Cowson needs your support for Support for Zhariyah Dunn’s Family

01/14/2026

“You hear that he said good job let me go to sleep”😂
(from his PT session this morning,practicing his rolls)