Friday, November 30, 2012

Sleep Study, Rett Syndrome and my girl

This week we had another sleep study for Abby. Since her Rett Episodes of tremors and jerks almost always happen as she is awakening we need to find out what is going on. Or at least the doctors do. Personally I think it is all Rett Syndrome and kind of it is what it is. Sleep disturbances come with Rett Syndrome but Abby's can be pretty rough.
This is my pretty girl while we were waiting to be admitted. She loves the hospital. Little weirdo.
Love this face. She looks like,"Say what?" She has Disney Princess eyes. Just adore her
Being hooked up to wires,straps,transmitters,EKG's and she's having a good time
  
Seriously? Hour later and she is still happy with tape and glue all over her head and face


                                         Oh Look a gauze hat and wire pony tail. Still having a ball


      A wire down between her eyes and taped down and into her nose. Is she complaining? Nope


OK seriously now. Tubes up her nose and running into her mouth and she's giving me the cheesey face. I have the best kid in the entire world

It took a while for her to fall asleep. More because she wasn't in her own room I think but shorter than at home where she can roam and play in her padded bed. I think her sleep was pretty normal for her. They tested how many times she wakes. Whether or not she stops breathing. Leg movements. Heart rates and o2 levels.

I did not sleep at all. I am pretty sure I was just starting to drift when they came in with their wakey wakey routine.

The tech said it would take up to 6 weeks to get results and suggestions but she was pretty sure Abby has Restless Leg Syndrome and that is what keeps her awake. I immediately asked if her leg sensors went off pretty hard 4 times and she woke up. They couldn't fathom how I knew that. They had come in 4 times shining lights on her or messing with wires. 4 wakes, 4 startles, 4 tremors. Rett Syndrome. Nonetheless I had to take her to the lab to get poked for iron levels.

Hoping someone that knows Abby or anything about Rett Syndrome is the one who reads the report. I hate to think of putting her on another med that will make no difference for something that can't be fixed. Not fair to her. She cant be medicated better. Not for some things.

I blame her father for her up all night routine. I'm pretty sure he's part vampire.

I will keep you updated!

Terri




Sunday, November 25, 2012

Rett Syndrome, Testing and Abby

Dear Abby's TEAM, My name is Kate Ahern. I have a master's of science in intensive special education and am both a practicing special educator and assistive technology specialist. My focus is on Augmentative and Alternative Communication and of particular interest to me is Rett Syndrome and augmentative communication. I have reviewed multiple tapes of Abby using various methods of augmentative communication and demonstrating knowledge of basic concepts. It is clear to me that Abby retains a higher level of motor ability than many girls and women with Rett Syndrome. Although she does not have the ability to use her hands to point or select she does, clearly, have the ability to use her eyes and her nose for communication. She is able to use eyegaze controlled speech generating devices with either her eyes through eye gaze tracking or her nose, by touching her nose to the screen. Apraxia is perhaps the most disabling part of Rett Syndrome. Essentially apraxia is a problem with intentional motor movements. The cruelty of apraxia is the more intent the person has the harder it is for her to move with deliberation. This means we must take particular care in how we ask girls with Rett Syndrome to communicate. We must be careful to let them use the skills that work best for them, in Abby's case her eyes and her nose. We also must be sure not to fall into the trap of testing and asking questions. Like any child the girl with Rett Syndrome wants to please. Abby wants to please. But when we test her and ask her questions, especially without much "wait time" we put them in an impossible situation - they want to please but their apraxia makes that next to impossible. In the past the assumed route to success in apraxia like this was so much drill and practice that the motor movement became automatic and the apraxia had less of an effect. We know, through research, that this does not work in Rett Sydrome. Instead we must use motivation to overcome apraxia, create such excitement that the apraxia is overcome with the sheer energy of the girl. We can do this with animated interaction, music, highly preferred topics of conversation or items and by using our abilities as educators to "read" what will excite the girl. We can also do this by asking "cloze-style"/open ended questions instead of multiple choice style questions. We also can do this by giving the girls a variety of communicative intents in a speech generating device. Instead of only requests and choices (which cause anxiety in that the girl might make the wrong choice) we can add jokes, comments, questions and other less anxiety provoking things. As educators and therapists I know you want what is best for Abby, for her to reach her highest potential. Please contact me so I can help in any way with Abby. I am happy to converse by email, review video tape and in other ways assist. Thank you, Kate Ahern, M.S.Ed. Ahern TEC; Haverhill, MA