The video monitored EEG went pretty much as expected, the only difference this time is they used a type of super glue to keep the wires attached to her head. The tech was awesome with Sadie. She took us back to the room where she laid Sadie down on a hospital bed and wrapped her in a blanket burrito. We decided to use the glue instead of the goo because one tug would pull the wires off. The tech mapped out her head with the red grease pencil and then prepped each of the 26 spots for the electrode wires. Each wire has a small metal disc attached which is then placed in the goo or in our case she laid it on her head covered it in gauze and squirted the glue on the metal. Immediately after that she used a small air blowing thing and held the end to blow on the glue so it would quickly dry. The glue smelled like super glue, which she said it was similar to. After all 26 spots were finished, she wrapped Sadie's head in gauze. She wrapped all the wires together in gauze too and attache that to really really long wire. All of that was put in a backpack and we were sent into "the room." It was the size of a really small bedroom. There was one twin bed, one recliner hospital chair, on child size table and two chairs, a TV, and a sink. There were two closets which held too many toys and too many small parts. No child needs to dump a box of miniature sized legos all over a room. But we did. And the rest of the toys came out and made a huge mess.
Bill and I took turns going out for a break. Our main objective was to keep her in view of the camera and make sure she didn't pull out the wires. We succeeded!!!
Four hours later, she had a couple of her "episodes" and we were back to the other room to remove the electrode with straight Acetone. So much for all my organic food and not exposing her to chemicals. We were sent home. We expect to get some news Tuesday!
Her head has been pretty sensitive, obviously and she looks like she has a bad case of dandruff because the left-over glue hasn't come off yet.
Another test behind us.
Saturday, September 5, 2009
Thursday, August 27, 2009
Wednesday, August 26, 2009
Wawa park
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Sunday, August 23, 2009
Neurodevelopmental Pediatrician Appointment
Dr. Montgomery was more than excited about Sadie's progress, since our last evaluation......at which time he had noted that everything with her seemed poised and ready, but patience might be best....he seemed confident, then, that it would be a matter of time before she started reaching some of the expectations he has for her.........we had begun to grow very concerned and anxious.
After this weeks evaluation, he described her progress as 'explosive' and referred to her as now being considered as 'stimulable' (in a nutshell, more aware and respsonsive), which is huge, with respect to how she will be perceived by therapists, etc.! Being 'stimulable' and still being in the more formidable age range, should help us secure more aggressive therapies, through school, etc. He referred to her as an ideal candidate for the new, Pilot program (Reverse Mainstreaming), that we have her set for at Birdneck Elementary this year, and encourages us to continue everything that Lisa has focused on (ie, Assistive Technology devices around the house to help with communication).
He's a great doctor, who is optimistic and realistic.......and loves Sadie......and seemed genuinely excited about where she is now and who she may develop into to, over the next few years.
Daddy.
After this weeks evaluation, he described her progress as 'explosive' and referred to her as now being considered as 'stimulable' (in a nutshell, more aware and respsonsive), which is huge, with respect to how she will be perceived by therapists, etc.! Being 'stimulable' and still being in the more formidable age range, should help us secure more aggressive therapies, through school, etc. He referred to her as an ideal candidate for the new, Pilot program (Reverse Mainstreaming), that we have her set for at Birdneck Elementary this year, and encourages us to continue everything that Lisa has focused on (ie, Assistive Technology devices around the house to help with communication).
He's a great doctor, who is optimistic and realistic.......and loves Sadie......and seemed genuinely excited about where she is now and who she may develop into to, over the next few years.
Daddy.
Wednesday, August 19, 2009
Seizure or Behavior
Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past month I have been noticing them more frequently. I assumed it was her quirky way and just part of a special needs personality. I think we all know what I mean when I say some people with special needs sometimes have quirky arm movements like tics. I started to get worried a few weeks ago when one night they happened at the rate of 1 each minute lasting for over 25 minutes. She would even hand me her cup of milk to do this hand arm mouth clinch movement and then get her milk back from me when it was over. I called the neurologist the next morning and she got us in as quickly as possible (2 weeks away). Ironically, Sadie also had an appointment with a pediatrician in her doctor's group for a penny size skin rash that next day. Dr. B was lucky enough to witness one of her movements and said it looked like a partial seizure.
This leads me to the appointment with Dr. F (the neurologist) yesterday at the hospital's EEG lab. After describing to the doctor these movements and also showing him a very short video of one off my blackberry. He concluded that he just couldn't say for sure. That she does have ataxia (drunken walk) and tremors (she is shaky) and she may just be having behavioral stems. When he described a behavior stem and I asked him if it was similar to us stretching or yawning or getting the shivers. He said yes. He said she might be doing it because it feels good and that we should try to remove her from the environment (if she is sitting then we should lay down) and that might make her comfortable and she won't do the behavior. He proceeded to say that partial seizures come in clusters and he asked if I see more than one at a time. A cluster is anything more than one. I couldn't conclusively say that they always come in clusters, but I do know they are more frequent when she is tired. Sooooo, Dr. F determined that he couldn't rule out behavior OR partial seizure, but one way to find out was to have another EEG, yay!!! not! Dr. F's nurse called when we got home to let me know that the doctor didn't want another routine EEG (she's had 2 already) that he wants a 4 hour video monitor EEG. Yes folks, I did say 4 hour not full hour.
So on September 3 we will be arriving at the hospital at 7:30 am after sleep depriving Sadie (putting her to bed at midnight and getting her up at 6am). She will have her little head mapped out with a red wax pencil and then gooey stuff put on each of the "right" spots and 26 wires smashed in the gooey stuff on her head all the while she is wrapped in a papoose/blanket burrito so she can't move. All of which takes 20minutes. Then we will be put in a small room large enough to hold on twin bed and one recliner chair and asked to hold her and play all in the hopes that she also falls to sleep so they can read her brain during wake and sleep. Oh and her little head will be all wrapped up in gauze and she will look like she just had brain surgery all except for the 26 wire pony tail that will come out the the back of her head and be attached to an EEG monitor for the whole 4 hours. The nurse did say that the 4 hour is a minimum and that if they saw "stuff" going on that she could be hooked up longer.
Many thanks to Nanny, she will be watching Shelbi Wednesday night and most of the day Thursday.
Yay!!!
This leads me to the appointment with Dr. F (the neurologist) yesterday at the hospital's EEG lab. After describing to the doctor these movements and also showing him a very short video of one off my blackberry. He concluded that he just couldn't say for sure. That she does have ataxia (drunken walk) and tremors (she is shaky) and she may just be having behavioral stems. When he described a behavior stem and I asked him if it was similar to us stretching or yawning or getting the shivers. He said yes. He said she might be doing it because it feels good and that we should try to remove her from the environment (if she is sitting then we should lay down) and that might make her comfortable and she won't do the behavior. He proceeded to say that partial seizures come in clusters and he asked if I see more than one at a time. A cluster is anything more than one. I couldn't conclusively say that they always come in clusters, but I do know they are more frequent when she is tired. Sooooo, Dr. F determined that he couldn't rule out behavior OR partial seizure, but one way to find out was to have another EEG, yay!!! not! Dr. F's nurse called when we got home to let me know that the doctor didn't want another routine EEG (she's had 2 already) that he wants a 4 hour video monitor EEG. Yes folks, I did say 4 hour not full hour.
So on September 3 we will be arriving at the hospital at 7:30 am after sleep depriving Sadie (putting her to bed at midnight and getting her up at 6am). She will have her little head mapped out with a red wax pencil and then gooey stuff put on each of the "right" spots and 26 wires smashed in the gooey stuff on her head all the while she is wrapped in a papoose/blanket burrito so she can't move. All of which takes 20minutes. Then we will be put in a small room large enough to hold on twin bed and one recliner chair and asked to hold her and play all in the hopes that she also falls to sleep so they can read her brain during wake and sleep. Oh and her little head will be all wrapped up in gauze and she will look like she just had brain surgery all except for the 26 wire pony tail that will come out the the back of her head and be attached to an EEG monitor for the whole 4 hours. The nurse did say that the 4 hour is a minimum and that if they saw "stuff" going on that she could be hooked up longer.
Many thanks to Nanny, she will be watching Shelbi Wednesday night and most of the day Thursday.
Yay!!!
Monday, August 17, 2009
Speech eval
Sadie had an AWESOME person do her speech evaluation today! I'm so excited to work with her and Sadie!!!!
Sent from my Verizon Wireless BlackBerry
Sent from my Verizon Wireless BlackBerry
Friday, August 14, 2009
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