We will finally be discharged next week! After a long hospital stay of over 3 1/2 months, we still don’t have a diagnosis. Krew was medically transferred because of a respiratory virus that turned into brain swelling causing seizures. He’s been on multiple medications & we’ve done all the treatments/procedures possible. With multiple opinions from neuro specialist & 3 different hospitals in OC & LA after reviewing his files they all said they don’t have a cure for his brain We are still waiting for the exome genetic chromosome tests to come back in May/June for any abnormalities to understand why this happened. Hoping when the test results come back, we can get more answers to help handsome little krew krew
He’s lost all ability to walk ( he’s 34 pounds, wish me luck carrying this big ollll boy ) & can’t eat on his own so he’s on a feeding tube. His body & eye movements don’t really connect so he’s physically all over the place. From being a “normal child” to “disabled” it’s hard to grasp all of this because it’s a whole new lifestyle I have to learn about He will be in physical therapy classes daily & still in school a couple days a week. My family & I have consistently been researching extra therapy’s, home remedies. organic feeding meal ideas, deciding on a home nurse to help out etc. If anyone has any recommendations I’d love to hear I know this isn’t the outcome we all expected but my little man is still here with us & Im so proud of how strong he’s been. I’m still praying he will regain his strength/motor skills it’ll just take some time to fully heal
I just wanted to say thank you x 100000 to everyone who supported us through this. I love all of you guys so so much. I couldn’t have done it with out all the love
-Chloe, Kash & Krew
