I got a video of her new seizures, should be first video on here now. There very strange but no clenching or breath holding.
Today is the day I will talk to Kristie heeley the neuro nurse to decide if we can take some meds off. My Mom is here and everything is going pretty good. day before yesterday Baybe had 4 seizures, yesterday she had only 3 and bothe nights there was no significant seizures enough to set off alarm. Also I found an old container of Keto cal formula that had a sticker on it that said the formula needed to be shaken every two hours. SO I decided to split the days formula into seperate bottles so every few hours I put in another well shaken bottle in the bag and for whatever reason it worked and we slept the whole night with no alarms from the food pump and she got all the formula because it didnt clog, it ran until it was gone. Yahh hopefully Its fixed and not just a flook, or fluke whatever.
Layla and Taylor are doing great too. We are back to only stressing about boys and clothes and Taylor ruining every pair of pants he has from playing soccer in the mud everyday at school. I love the little drama because Its not there when the big problems are. Im workin now on trying to get them both into an extra activity just for them. We are debating between Karate and hip hop dancing. Im leaning torwards the dancing because then they can dance for me and entertain me. I could watch them dance and sing all day. They have some videos on my youtube of them doing there stuff. You can get to the other videos by clicking on the video itself again while its playing. I am loving having all my kids home and safe.
So the stupid blood ketone test strips that I need to give the dietician some exact results as soon as possible is not covered by my insurance. The company said to go to a pharmacy and buy them myself. I went to a pharmacy and a medical supply store and nothing. I got online and called every pharmacy and nothing. I called prov med supply back and they said they do have some(why didnt they tell me that before?) but they cost 50 bucks for 10 test strips. I have a feeling they might not let me make any med changes until they have the results to these test strips. Hmmm!!
Still struggling with my school work a bit. I just really need to figure out how to take the summer off so I can just hang with the kids. I just gota go like a steam train and get through this term strong and hope for the best. I cant believe there is only about a month left of school, this term is just flying by. I am still a week behind and I need to catch up before finals. AHH. Ok I got this! Im really loving my child health class, I wish I could just take all classes like this. The hard part is that there is nothing that I could do employment wise that would come from taking these classes now. I will always have Baybeblue by my side and that is the way I want it to be. I will have to change gears in the next school year to find a career that will accomodate for Baybe and her schedule. Any ideas would greatly appreciated. I would love to just give advice to women. I want to just help every women in the world be a better person an be happier. That would make me feel good.
Im still dealing with the fact that we are not letting the situation that happened at legacy go. I want to know the truth about what happened to my daughter!! I feel sometimes like I am the only one who really cares about getting to the bottom of things so this doesnt happen to someone else. People need to know about the healthcare system and how scary it can be. They are just people too with there own agendas. Its a long process I guess.
Love you all, Thank you so much for all the support. You have no idea how much it means to me just to see that people care. It has made me feel so different about life and the world. Hope you all have a great day.
Friday, May 8, 2009
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