A little bit of everything...
The Vigabatrin has NOT stopped her seizures. We go up to 750mg today (250mg in AM and 500mg in PM).
Yesterday, we saw signs of another tooth coming in. This time it is the right front tooth. Her left front tooth is not quite all the way in yet but the little white nub is getting bigger. I guess this is why Sophie has been so crabby the last week. She has been much happier yesterday and today!!!
Sophie is now able to pull herself up to a kneeling position. The other day, when I went to peek in on her, she was kneeling and looking over her crib. How precious!!!
We leave tomorrow morning for our trip to Detroit. Our schedule is as follows: Tuesday - check in and get settled in; Wednesday - FDG PET scan with EEG at 9:30am (water only after 4am due to she will have to be sedated - not going to be a happy baby); Thursday - 24 hour video monitored EEG begins at 3:45pm; Friday - meet with pediatric neurologist at 2pm. I was so excited to get this appointment that at first I did not think about what was going to happen. Then once we got everything confirmed, it hit me - they would not being doing all these test if they did not think that there is a chance they would find something wrong with Sophie. Then I got scared. I know it is better to know but...
Here is a brief description of a PET scan -
"PET (or positron emission tomography) is a medical imaging tool which assists physicians in detecting disease. Simply stated, PET scans produce digital pictures that can, in many cases, identify many forms of cancer, damaged heart tissue, and brain disorders such as Alzheimer's, Parkinson's, and epilepsy. Technically, PET is a medical imaging technology that images the biology of disorders at the molecular level before anatomical changes are visible. A PET scan is very different from an ultrasound, X-ray, MRI, or CT, which detect changes in the body structure or anatomy, such as a lesion (for example, a sizeable tumor) or musculoskeletal injury. A PET scan can distinguish between benign and malignant disorders (or between alive and dead tissue), unlike other imaging technologies which merely confirm the presence of a mass."
This is the PET scan that Sophie is getting -
"The most common form of a PET scan begins with an injection of a glucose-based radiopharmaceutical (FDG), which travels through the body, eventually collecting in the organs and tissues targeted for examination. The patient lies flat on a bed/table that moves incrementally through the PET scanner. The scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals, which are processed by a computer to generate the medical images. The bed/table moves a few inches again, and the process is repeated. This produces the digital images, which are assembled by the computer into a 3-D image of the patient's body."
The Vigabatrin has NOT stopped her seizures. We go up to 750mg today (250mg in AM and 500mg in PM).
Yesterday, we saw signs of another tooth coming in. This time it is the right front tooth. Her left front tooth is not quite all the way in yet but the little white nub is getting bigger. I guess this is why Sophie has been so crabby the last week. She has been much happier yesterday and today!!!
Sophie is now able to pull herself up to a kneeling position. The other day, when I went to peek in on her, she was kneeling and looking over her crib. How precious!!!
We leave tomorrow morning for our trip to Detroit. Our schedule is as follows: Tuesday - check in and get settled in; Wednesday - FDG PET scan with EEG at 9:30am (water only after 4am due to she will have to be sedated - not going to be a happy baby); Thursday - 24 hour video monitored EEG begins at 3:45pm; Friday - meet with pediatric neurologist at 2pm. I was so excited to get this appointment that at first I did not think about what was going to happen. Then once we got everything confirmed, it hit me - they would not being doing all these test if they did not think that there is a chance they would find something wrong with Sophie. Then I got scared. I know it is better to know but...
Here is a brief description of a PET scan -
"PET (or positron emission tomography) is a medical imaging tool which assists physicians in detecting disease. Simply stated, PET scans produce digital pictures that can, in many cases, identify many forms of cancer, damaged heart tissue, and brain disorders such as Alzheimer's, Parkinson's, and epilepsy. Technically, PET is a medical imaging technology that images the biology of disorders at the molecular level before anatomical changes are visible. A PET scan is very different from an ultrasound, X-ray, MRI, or CT, which detect changes in the body structure or anatomy, such as a lesion (for example, a sizeable tumor) or musculoskeletal injury. A PET scan can distinguish between benign and malignant disorders (or between alive and dead tissue), unlike other imaging technologies which merely confirm the presence of a mass."
This is the PET scan that Sophie is getting -
"The most common form of a PET scan begins with an injection of a glucose-based radiopharmaceutical (FDG), which travels through the body, eventually collecting in the organs and tissues targeted for examination. The patient lies flat on a bed/table that moves incrementally through the PET scanner. The scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals, which are processed by a computer to generate the medical images. The bed/table moves a few inches again, and the process is repeated. This produces the digital images, which are assembled by the computer into a 3-D image of the patient's body."
Through all of this, Sophie has never stop smiling!
Please keep Sophie in your thoughts and prayers this week.
3 comments:
I love the pictures.... the way she's looking over the side of the crib like she's planning a prison break!!
All our love and thoughts are with you on your flight to Detroit. Give Sophie a hug and kiss from her KC fan club.
Love,
Barb
totally random comment: i found your complaints about the "runtime error" and am having a similar problem myself. Some (but not all) people report my blog shutting down on them. Did you ever figure out how to solve the glitch??
I just wanted to sincerely apologize for the insensitivity of my blurting out the tech-related comment. To be honest, I didn't even check the subject matter of your post.
I will indeed keep your brave daughter in my thoughts and prayers!
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