Hello Im back. We are home again and although she is congested still, she is breathing good and happy to be home. The rest of our hospital stay turned out better. We got our favorite nurse Stephanie for both wed and thur. Wednesday night Baybes whines during her seizures turned into a screaming cry along with little jerks like before. But at the same time she is down to 1-4 seizures a day, a month ago she was recorded having 50 a day or more. That is amazing and I have to give thanks to the diet. Its crazy because in the bible when people were reported to have "fits" which is what they called seizures then they would fast until the seizures were gone. THis diet mimicks that same effect. I will add some info about the diet later for anyone curious. Now the next step is to hope that when we do start taking meds away that they dont come back. It would really suck for her to have to stay on the diet and the meds because of all the side effects are gona add up eventually. She could end up with kindney, liver and gastro area problems, heart problems and many more. She was really alert for the few days she was in the hospital really sick. She woke up early and stayed awake all day and then stayed up til after midnight. Now shes back to her old sedated self and sleeping most of the day. I have decided that being trapped down in my room with her was not good for either of us so we have now moved upstairs and I have given up my bed for a mat on the floor next to her bed. I have to say that its alot easier to be up here in one spot with her thousands of medical supplies. OMG I woke up this moning and pulled up Baybes shirt and she had little white chunks on her belly and her belly tube wasnt attached. The tube was tucked in between her legs and she rolled over to me and pulled it off. I was worried that the whole to the inside of her was going to be clogged cause the thing was just hanging out open all night. But the confusing part was that there was not a drop of liquid anywhere so it had ot have been after her formula ran out or else it would have squirted everywhere. ANd for whatever reason her belly didnt leak out anything either. So I just gave her a new tube piece and fluched it through a bunch. I did vent her belly and got a big burp so she must have been sucking air through the hole. Haha and gross at the same time, I know.

Im gona hope and pray that we get to stay home for a while and make everyone be more careful when they come around her so she doesnt catch anymore viruses. Time to focus a little on getting kids into some extra activities and taking care of myself. I feel like such a huge relieve off my shoulders taking a break from school, It is sad but had to happen I know that. I am very thankful for the talk I had with the social worker at the hospital. SHe really made me feel better about the whole thing. She made it seem like it wasnt that serious like I had built it up in my head.

Thank you to Tianna for making that post for me I was so mad while I was at the hospital I started having trouble with the screen on my laptop and by the end of the day it looked like black ink leaked all through it. I am hoping to be able to get some of my stuff off of it but not sure how. Probably going to have to hook it up to the tv. So the bad part is that if we have to go to the hospital again I wont be able to blog. I did find out that Kristy Heely mad it so that Baybe will be followed by our favorite neuro Doc Jason. It will be him and Dr Roberts that we will start having clinic appts with if we ever stay out of the hospital long enough. Im also excited to get her back working with her physical therapist Kathy and her eye therapist Mary. We both really miss them. They have such a great support system through all this. They have gone out there way to come see her in the hospital and are very understanding when I accidently forget to tell them we are back in the hospital so they show up at my house and Im not there. Unfortunately this has happened quite a few times but they never get bothered by it and I am soooo thankfull. Mary is a great advice person because she has adopted like four kids with disabilities that all had feeding tubes and every single problem that Baybe has. She even has a dog with seizures. Hope you all have a good day.