Kasai’s Journey

02/12/2025

Tomorrow is December 1st! Who else has Christmas anxiety 😬
Elf in the incubator is solely to raise awareness for prematurity. Every year people think I am making a joke of it, but every year I say the same, "Babies born this small are no laughing matter." Putting real life objects like these out there for perspective gives people a slight grasp onto the size of some of these babies. Pictures don't always do that.

27/11/2025

Last Thanksgiving,
Kasai’s 1st Thanksgiving,
We spent in the hospital. Today we are fortunate enough to be home, surrounded by family! Our family couldn’t be more thankful this year, to be home and experience our “1st” holidays at home. I hope you are all enjoying or enjoyed your family time and have taken a moment to look around at your friends and family and be thankful for what you have in front of you. Happy Thanksgiving from our family to yours! We are thankful for your love,support and prayers!

25/11/2025

November 25th,Kasai had his audiology appointment again today,however we did not get an results because he fell asleep again. They did say his right ear is a bit congested and want us to follow up with ENT,so we will do that on december 8th. They did want to add a sedated hearing test onto his bronchoscopy in december as well just to see what that says vs what it said in january. Kasai also got his glasses today!!! He is adjusting but so far seems to be in complete awe of everything. We’re not sure how much it helps him see but he definitely seemed overwhelmed by everything when he first opened his eyes so i think he can definitely see more now! We are so excited for this chapter and to see how the glasses work for him! Thank you all for the continued support,love and prayers❤️

21/11/2025

November 20th, We are navigating the teether rollercoaster with Kasai. Ontop his BPD already making him hot and have hot flashes teething has been worse. We’ve kept his little fan on him but also make sure he doesn’t get too chilly. He’s living n loving the clothes free life at the moment. Had to give a couple doses of tylenol the first few days but he’s been doing better! Orajel before bed has been a big help for him,as well as some atropine drops to cut down the drool. He has also reached 4mls on the new seziure med which has made him pretty sleepy on and off but he seems to be tolerating well! We see audiology next week and hopefully he stays awake for them. We also get his glasses next week!! Which we can’t wait for,we’re so excited to see how he responds to them! All in all Kasai has been doing well,just wanted to share few pictures and a small update our life has been crazy the last month but we’re all doing good!! Thank you all for the continued love,support and prayers❤️

19/11/2025

11/11/2025

For those of you who follow Kasai’s page,please show this boy and his family some love. My family and i follow his story and this family has given us strength through our journey. Seeing how hard this Mama advocates and how hard her baby fights gives me so much warmth in my heart and so much hope. Praying for this sweet boy as he’s been in the hospital for awhile❤️‍🩹
Creed's Journey

This is a story of God's grace and mercy. This is Creed's journey. Also my journey of becoming a spe

10/11/2025

Safe to say he likes it the buzz buddy. This is something his old OT used to bring with her and he used to not let it go. So i’m glad they got him one🫶🏼

10/11/2025

Trying some oral stimulation!

10/11/2025

We met with Help Me Grow today and they gave Kasai a few things! A Buzz Buddy,which is used for oral stimulation for kids that don’t put stuff in their mouths or don’t eat by mouth. It’s to help him not lose sensory to the mouth. Also a back massager and a vibrating pad that he can use for naps and to sleep. Kasai loved his vibrating chair which he’s growing out of so we’re glad to have these other vibrating tools that he loves!! He would not let the Buzz Buddy go😭 Safe to say he is enjoying the tools! I’m gonna post a few videos in a different post as it won’t let me here!

31/10/2025

October 31st,Happy Halloween to Everyone!!
Kasai had a Neurology Appointment today followed by a Kidney Ultrasound/Nephrology Appointment. Neurology was following up on his seizure meds as well as his EEG from august. Turns out the hospital team wrongly informed us. They did still see seizures on his EEG,just not anything they haven’t seen before. He has “Focal Tonic” Seizures,meaning the seizure starts on one side of his brain not both sides at the same time. It also means he stiffens a limb and stretches it out awkwardly while going through the seizure. His Neurologist recommended starting him on another medication and will discuss other options once we get a new EEG in a month or so. She also diagnosed him with Quadriplegic Cerebral Palsy with pretty much max severity. Which just means he has CP,it affects all of his limbs and he’s at max severity. We knew this was a high probability with Kasai’s brain injures and prematurity. There is no medicine to help,just continuing therapies and helping Kasai live his life to the fullest. As for his Kidney Ultrasound,it looks good! The bubbling and debris he had when he was very premature seems to have resolved. His Nephrologist seemed very pleased with his exam,his ultrasound,his previous labs and his blood pressure. She wants us to turn in a urine sample just to make sure the proteins and everything looks good,as they don’t have a recent urine analysis since april. Otherwise Kasai had a great week of appointments an we can’t wait to get home,unpack and enjoy being back in our own beds. Thank you all for the continued support,love and prayers.

29/10/2025

October 29th, His eye appointment went well! This was the first time Kasai actually interacted with one of his doctors! Of course mommy had to keep talking to keep his eyes open but he did it and did so good! We found out Kasai is very near sided. She recommended glasses to help his vision be less blurry and see a little further. So we fitted glasses,i couldn’t get a good picture but i got a decent one. He’ll be getting his glasses in a few weeks!! I think he looks so stinking cute in glasses!! We can’t wait for him to see better and see his reaction🥹! Thank you all for the continued support,love and prayers!