Been a little while everyone I’m so sorry. Taking it all in! Over the last week we’ve seen some changes in little krew krew. We had to wait to let the vaccines settle. He’s started doing some abnormal twitching daily & overnight. We did another EEG still no signs of seizures. We are doing the MRI today to double check before we start the treatment Tommorow to see if anything new has happened since prior MRI. For the new treatment that was recommended from the specialist in CA, starts Tommorow. We’re doing the highest based on his weight to be done in 2 days rather than separate 2 doses in 2 weeks.
He’s really limp and still can’t walk. He’s gained so much healthy weight, now 33.6 & is so tall! His arms & legs are looser now not so stiff. Making progress there! He still has the feeding tube & on many different vitamins for the mitochondrial disease cocktail they call it.
Trying daily everything I can to help him out of bed, keep him busy, giving him all the extra cuddles, take him outside etc & beat this silly thing getting our krew krew. Pray that this is it for my baby boy & we can be sent home together soon after this. We love you all for the support keep praying for him! he can feel it! love always mama Chloe xoxo
