Swimming Against The Current

Monday morning I went in for the first part of my DBS surgery. It was a very scary morning. I went into the operating room and they put me to sleep to shave my head, do a CT scan and attach the frame to my head. I had to be awake after that so they woke me up and oh my god the pain in the back of my head was unbearable. I started crying that my head hurt so they gave me some pain meds and the pain went away right away. I remember the doctor moving my foot and arm all over the place and it was pretty tight. I kept saying I was freezing because it was so cold in there so they kept layering on the blankets. I asked the dr if he was almost done and he said not too much longer and shortly after that he said "We're turning it on!" So, they told me to move my foot and it felt so good to wiggle it. Then they said "How about your hand?" and I opened my fingers right up. I remember it perfectly and it was so amazing. They were very happy with the results. They put me back...

For everyone that knows a little girl: i have started my own business making hair accessories, tutu's and flip flops for little girls. (I have also made flip flops for adults!) You can find me on Etsy or on Facebook under Mandi's Bowtique. Please check it out and pass the word!! I can make any size or colors you would like! :) p.s. Im leaving in one week to go to MA and having surgery in three weeks AHHH!!

Sleeping at night is getting harder and harder. When I close my eyes all I can picture is getting my head cut open and all I can hear is the drilling. When I look in the mirror all I can think of is in a month all this hair will be gone. When I look at Hailey I just want to cry because taking care of her is going to be so difficult. But then I think about how difficult it is now to pick her up, and how much support and family I have that will help me take care of her. And in the long run, when I can hug Hailey with two hands, this will all be worth it. It is so scary, but I am doing this for her, and I will get through it. The first surgery is scheduled for April 25th. I am heading to MA April 11 to prepare. I am having an evaluation on the 12th, pre-testing on the 13th and a MRI under anesthesia on the 14th. On the 15th my sister is having a 31 gifts party for me so I can maybe get some scarves to wear on my head. My family is so wonderful, I love them soo much and I dont kn...

It looks like I will probably be having the surgery. I am waiting for Ryan to hear back about doing a rotation in MA so he can be there with me. I have a pre-op evaluation scheduled for the end of April and I'm waiting to hear back about a surgery date. I am very nervous but think this is the best thing to do right now, and I am hoping for a fast recovery and to be feeling much better very soon. Kristy, Gary and the kids came to visit these last couple days and we had so much fun! We hung out by the pool a lot and went to the Red Sox/Yankees game last night! It was a lot of fun and our kids were a big hit and were taped twice! Hailey has been doing very well. She is almost 6 months old already! I can't believe how time flies. She loved having Zach and Libby here, so much that she's been sleeping for 4 hours because she wouldn't sleep when they were here!

Last week I went to MA for an appointment with my neurologist and with a neurosurgeon. My neurologist explained to me that DBS was my only option. We've tried so many medications and botox so many times and my symptoms never improved. Since Hailey was born, things have gotten worse and there is a lot of hope for me with this surgery. I met with the neurosurgeon the next day who agreed with the DBS. She explained the surgery to me. I will have to be there at 6:30 am and the whole thing should be done by 1:30. I will need a frame put around my head and an MRI and CT scan. They will also need to shave my whole head. I will be put under anesthesia while they cut my head open but once its all set I will be awake when they put the electrodes in. I will need to spend 1-2 nights in the hospital and cannot lift anything for 2 weeks. One week after this surgery I will need to go back in to have the pacemaker put in. The wires from my brain will connect to the pacemaker and a few w...

Ever since I heard the words "Deep Brain Stimulation" for the second time from a second doctor, I have been reserching it a lot. As much as I want to know everything possible about it before I go through with it, I don't know if it is such a good idea to be watching videos of it. I watched a show the other day about a girl with dystonia who had DBS. Her's was much worse than mine but her hand looked very similar. They showed her in surgery and when they told her to move her hand, she just opened it. It was a miracle. Although she's not cured, she can now do so many things she never thought she'd be able to do again. My left foot is now pretty much curled in most of the time. I can still walk but it turns in. I have spasms so frequently that I just don't bother mentioning it anymore. It's very annoying. My neck also twitches now to the left at times, mostly when I'm stressed out or thinking about this surgery!! Well, I'm going to MA a...

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying...