Well we have been out of the hospital now since before August. No more injuries, illnesses, or broken bones thank goodness. Basically what has been happening starts out with the fact that the last two meds that they had Baybeblue try was the lamictal and the zonegran. AND those meds did nothing but increase her seizures to the point where she was having 40 plus seizures a day. As soon as we knew the meds had been on board long enough to help if they were going to then we removed them. This now left her on only the 3 doses of clonazapam a day, and also some other suppliment type meds like ranitidine for refluxe, faradantin for preventing bladder and kidney infection, potassium, and a very small amount of vitamin D. I gave it a few weeks and Baybeblue was screaming and crying and seizing for hours everyday. I started calling the neurologist to see what the next step was going to be. I told them that since the last two meds were kind of there last option ideas that I was interested in starting the process to go see a new neuro at a new hospital that may have some new ideas. They told me that since Baybeblue has had a second opinion before that this would be difficult to get the insurance to agree with. They then told me they would talk and call me back with info on what to do. After waiting another week and watching Baybe suffer waiting for them I decided to try my own theory. Since it seemed that every med we tried seemed to increase her seizures and everytime we removed one she got better, I wondered what would happen if I removed the last med...the clonazapam that she had been on since she was 2 months old. So I decreased it first by removing the mid day dose, I immediately saw a decrease in seizures, then I removed the morning dose and for the first time ever Baybe actually went several days without a single seizure. Stoked by this info I decided to take the last dose very slowly. We spent a week enjoying our new reality of alertness with Baybeblue. Not on any sedating meds during the day she was alert and happy and singing n dancing in the car, trying to get up, demanding to be held. I had already done all the research about withdrawing off of clonazapam and no that there are risks of doing it too fast so I watched closely for any symptoms and just took the last dose off very slowly. She even came down with a bad cold and although normally this was something to freak out about, and I did a little, I took her to the hospital and they gave me an inhaler for her but said she was fine. Off the meds she is stronger and was able to fight off the cold on her own outside of the hospital. Then she had a few days of increased seizures, of course again I thought the worst but after doing like 50 full examinations of her I found that her very back molor was trying to bust through the surface and her whole gums were swollen up like a big bubble. A little anbesol and problem solved. So now she is done and off of all the meds. She still has a few seizures a day but they are isolated and she recovers quickly and doesnt seem to be too affected by it. The benefits right nwo far outway the negative. She is so happy and alert it is amazing. She watches me walk around the room, she recognizes her favorite people and she is trying so hard to get up and talk. Yesterday she got a new walker which we havent used for a while because of her bones. But even the therapist says that it doesnt make sense but her bones seem to be stronger too. Then while laying on the bed the therapist rolled the ball to her and said throw me the ball and Baybeblue rolled it back to her, it was soooo awsome. Since then she played with the ball all night and has been rolling it ot me all morning. What amazing concentration and commitment. Her tooth is better and her cold is better and she is stable and happy. We had our most recent calcium check a week ago and havent heard anything back which is a good thing. If its bad they call me that day. So even though we are still on a mostly saline diet she is stabel with her calcium too. Now we wait for endocryn to figure out when n how we are going to start weaning her off the saline so we can see if the calcium spikes again. Other than that life is truckin right along.
Lala and Taylor are doing great, full of drama but great, lol. Taylor is the little ladies man. Either its a great day because he didnt get in trouble and he has a new girlfriend, or its the worst day ever cause he broke up with his girl and got a dragon ticket :(. Either way he is healthy and has every reason to be happy. Lala is about the same as well. Friends rule her life right now so she pretty much spends her days cleaning her room so she can have privilidges. SHe had goten a bunny for her bday from my good friend Tracy and her family. It was a great gift and the bunny was already grown and fixed. But with a few weeks we realized that the bunny hated everybody and didnt like to be loved or held. soooo we gave the bunny back and got the two cutest bunnies in the entire world. They are dwarf long fluffy hair cute as heck babies. Everybody is very happy about them except tay who now wants his own bunny! NO!! Taylor is starting basketball right now, and Lala has decided to take a break from Dance and is now talking about wanting to join a cheer squad so were looking into that.
Me, Myself, and I... Im doing pretty well actually. I met someone new, well kinda new. He is someone that I have been friends with for a long time but we never really thought of eachother as more than friends. We started hanging out a little bit and he asked me out on a date. Before we could even go on a date I said actually I need someone to take me to my sisters rehearsal dinner and wedding... So for our first date he got to meet my entire family and be my date with alot of people watching lol. I cant imagine how nerve racking that would be with my family, they are wonderful amazing people each one of them so that can be overwhelming. Kevin did amazing he made good first impressions and everyone fell in love with him. Even my Dad likes him and that is the first time that has happened. So far things are going great, it has been a month since the wedding and we are still dating. He is a machine designer for his family company and also a photographer on the side which is soooo fun. He is very smart and funny and full of energy because hes um 22. Yeah hes 10 years younger than me but he is possibly more mature than I am. The kids love him and he has really brought something extra to the table in this family. LITERALLY since he is an amazing cook and has ben cooking me dinner almost everynight. The kids even love his food which is huge cause they are very picky. He has totally bonded with Baybeblue, All I wanted was someone who acknowledged her when they walk in the room and he goes far above and beyond. He loves her and plays with her and actually understands her. Im not saying that I can predict what will happen in the future, but this is pretty much a miracle that I would find someone like him. I will be cautious and careful and at the same time enjoy every minute of it, because I have been through so much with men and I so deserve this. Thank you Kevin for coming into our lives and showing us what love from a man is suposed to feel like. Not to mention how cool it is to have someone to share with everything that is happening with Baybeblue. Ill add a few recent pictures, Im sorry its been so long since I blogged, I wont wait that long again, but the distraction has been a good thing :)
