On Sept. 18th our lives were changed forever. We found out that Alyvia had a tumor in her brain stem, it needed to be removed immediately. We came down Sept. 24th to Primary Children's Hospital (in SLC) to get the tumor removed. The neurosurgeon felt the surgery went well, and that he was able to remove all the tumor, the tumor was a grade 1 (they are graded 1-4, 1 being the lowest and benign) However, Livie had complications after the surgery. She aspirated (we still aren't sure how or why) and she got incredibly sick. She was sent to the PICU (Pediatric ICU) where things went from bad to worse. Her lungs were so sick and full of fluid that she had to be put on life support to keep her alive, over the course of the next couple of weeks she had a lot of bad things happen to her little body. She had an air leak in her lungs, blood clots, and swelling on her brain. She was in critical, unstable condition for 2 weeks, we didn't know if she was going to pull through or not. She is a strong little girl though, and she kept on fighting. We are now past week 6 and her body is definitely healing, she is off life support and breathing on her own (yay, no trach!) she is able to swallow and protect her airway!! (So no more aspirating.) Health wise Alyvia is doing okay, she hasn't seized for a while, her lungs are looking better, she doesn't have any more air in her tissues (so no more air pocket around her heart) However, she is very unresponsive, she is in her own little shell. It is so hard to see her like this, so unlike her self. She doesn't talk or focus on things, she just looks right through me most of the time. She does not talk. I know Livie is in there.... I guess I just need to give her more time. She has already improved so much. I just really miss my baby girl and her fun little personality.
**update: We found out Alyvia has Cerebellar Mutism and that is why she has been so unresponsive. CM means there was damage to her nerves during brain surgery...because of this Livie can't talk or see. She has cortical blindness. She will have to re-learn many things. Her brain needs to heal. It usually takes months for people to regain their previous abilities, (speech/eating/walking/etc) Some people never do recover. However, Livie is talking again and eating on her own. She is making baby steps every day.