Hi guys, so two days ago, Krew started on the immunomodulators that were given from a specialist in California. He was either going to be given the doses in two days rapidly or two doses is in over two weeks. I chose to do them in two days because every day he is struggling, so just really trying to see some progress. But today he finished both doses. He had no complications and no immediate emergency medicine needed to be given. Yay! Were not supposed to see any changes physically or neurologically for at least two to three more weeks. He is acting a little more calm which is amazing. Normally he’s all over the place yelling or squirming around. He’s still on his feedings every four hours and he’s given his meds three times a day about a total of 12 difference ones. He’s healthy physically and gained some good weight! I can’t believe how much he’s grown from the beginning in December! We’re starting today to eat puréed foods. We are still waiting for a couple of the genetic tests to come back. It’s testing over 700 chromosomes to see if anything in his brain is missing or not normal. Besides the cerebellum we already know that has decreased & he won’t ever get parts back. Hoping the results come back soon! So we can go about treating anything else specifically.
Thank you for all the donations. It has really helped me through this. I haven’t worked since the beginning of this so it’s been tough thankful to have you guys. Keep praying for krew krew it’s working ⚡️✨ I’ll do another update in a couple days love always chlo
