We made it at home a week

The last few days have been interesting. Baybeblues seizures have totally changed. Now when I see her flickering her eyes I start patting her on the back like we used to and it keeps her from clenching up and holding her breath. Then she goes into like a state of panic instead and does a little whining cry and then its done. I will try to video tape one of these new ones but mostly I have been worrying about getting them to stop by patting on her back. If I dont start patting soon enough then she clenches up. Yesterday Baybeblue only had one seizure all day, granted she is very sedated still from being on the diet and the meds at the same time so she is sleeping all day and only having awake time in the afternoon and evening. SHe is alert and seems to be happy during this time and is becoming very clingy to me and even whines a little when I put her down. Last night the pump drove me crazy again and Im not sure what is going to be able to happen with that. The medical supply place says that they only have one other pump and it is not portable so that really sucks. I need it to be portable because she is on constant feeds. But the other problem lies in the bags because Im suposed to be able to take the whole bag and pout it into the fridge if I have to leave and ten hook it back up later, but the pump wont let that happen. When I hook it back up it is clogged and wont work. This is not good only because insurance is only supplying me with one bag a day and I am using atleast two a day because it keeps clogging and theres nothing I can do to fix it. Im not sure what is going to happen when they run out but I dont think I can just go buy these from a store.

Had big one week appt yesterday and everything is going great. They said I did a wonderful job caring for her bed sore and its almost gone already which is amazing, they normally take two weeks minimum to heal. THe burn on her toe from the pulse ox is ok and isnt infected or anything so just stinks to have but is healing fine. Baybe overall was healthy and doing good. I aasked if we could please get her off some meds now because her seizures have reduced and she is just soooo sedated but the Doc said that I have to wait til Friday and talk to our neuro nurse that takes care of everything Kristie Heeley and then she will let me know if I can take any off. I dont understand why they wouldnt atleast want to try taking her off of some but I have to trust them.

My mother is coming to visit today and I am very excited to see her and to have a nice, peaceful mothers day with no trips to the hospital. Il let yall know tomorrow whether we can take some meds off and how it helps or hurts her. Have a great day.