The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!
Sunday, October 21, 2012
Hi ho, hi ho it's back to Cleveland we GO!!!
We made it safe and sound! So far things have went much smoother than last time. For starters they got her IV in on the first try!!! Last stay it took 8 times. I have been so anxious over that silly IV. You really shouldn't loose sleep over things like that! But they got it and Bailey was so brave!!! It's amazing how brave she really is. She knows Exactly where we are and what they are going to do. They will come in with something and before they can say anything she is telling them what is going to happen.
The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!
The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!
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