Skip to main content

DBS Scheduled

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 know what I would do without them. They have made me the person I am today and they have been there for me through so much. I can't thank them enough for all they've done.

Hailey is doing well. She is eating her fruits and veggies now, sitting up on her own and will be 6 months old already on Tuesday! Wow, time flies. I am having a blast with her. She is my world, my everything and she is perfect in every way.

Ryan is also doing well. He has 3 more 6 week rotations and one 4 week rotation left and he is done PA school! He is looking at maybe doing a rotation in MA in May s he can be there with Hailey and I. I hope it all works out. He is such a wonderful man and I am so happy to have him in my life.

Comments

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 comments
Read more

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...
Post a Comment
Read more