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




Tuesday, November 27, 2012

Car Santa has a holiday surprise for family whose van was stolen on Thanksgiving Day

Car Santa has a holiday surprise for family whose van was stolen on Thanksgiving Day

An incredible outcome to our van being stolen on Thanksgiving day.

Like it says in the video the police found our van in a not so savory part of town. I wanted to go down there immediately to see what I could salvage and see the condition but the officer told me it wasn't safe and I could go look at it on Monday at the impound yard.

At the impound yard they make you pay the tow fee. Even if you are a victim of crime with a report. I was shocked to find out that you also only get 10 minutes on the lot. 10 minutes to decide if you are going to take your vehicle,gather your belongings or junk it. It had been wrecked..not bad but still. The ignition was gone. There were random pieces of the car in the car. I didn't want to but junked it so I could pay the tow fee.

I know I spent the first few minutes just....pissed I guess would be the best way to explain it. Everything was gone except for an umbrella and the tire pressure gauge. 2 boxes and 2 bags going for donations to Goodwill. An extra diaper bag. My husbands backpack,  tool box and a tool bag. Abby's car seat. My friends camcorder we had borrowed to tape therapies. I still don't know how to tell her it's gone. Think Ill wait till she asks and just throw up on her shoes and hope that changes the subject.

Fast forward to last night. The reporter, Mitch Weber, who absolutely rocks and his cameraman, Rex who also rocks, showed up for a follow up story about the car being found. Rex diddled around here for an hour taking video and making excuses to why Mitch wasn't here. We talked and joked around. No big deal.

Mitch finally shows up and asks us a few questions. All those what now and I'm so sorry kinds of things. I remember feeling bad for him because he felt so bad and looked so sad. You can tell he's a fixer.

At the end of the interview they wanted us to come outside for a last shot. I should have hear that bell ringing then but I didn't. Ole clueless Terri.So we wrapped Abby up and headed out the door. The second our door opened it was like Paparazzi...thanks to a neighbor with a pro camera that shoots everything. I couldn't see anything while coming down the ramp but flash flash flash. I could never be a celebrity. I don't know how they walk with all that. I turned and Mitch stepped out of the light and had keys in his hand and Santa was next to him and some other people and a Van with a big sign on it.

I was floored. Absolutely floored. I think I tackled poor Mitch after Santa got his hug. I'm usually Miss Chatty Cathy and I was speechless. Didn't know how to say Thank You or do a dance so I just stumbled my way through.

Piece of advice. Never play poker with Mitch Weber, He was good. I had no clue.

Children's Mercy is working with us to get Abby a proper car seat so the biggest worries will be taken care of. The rest we will have to replace in time but for now we couldn't be happier.

Thank you Car Santa, Mitch,Rex,Terry and everyone from KSHB. We really appreciate it!

Merry Christmas!


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

Friday, November 23, 2012

Family's van equipped with special needs car seat stolen on Thanksgiving

Family's van equipped with special needs car seat stolen on Thanksgiving

The above link is the story of how our van and many of our items were stolen on Thanksgiving. We discovered it as I was almost ready to serve dinner.

I have had phone call after phone call and message on how people can help. I can honestly say that I don't know what to say. I understand as I would want to help a friend of mine if they were going through the things we are.

I had some people suggest a couple of fundraising sites and I checked into them. They charge ridiculous fees and I just don't see someone making money off of our problems so here is what I have come up with for now....

We are in process of setting up a Special Needs trust for Abby that can pay for anything she needs. The papers have been drawn up and we are just waiting to sign them and we have contacted the lawyer to move up the process ASAP. It already has a name. Abigail M Vejrosta Trust.

What we can do for now is take donations for this through Paypal. All donations or gifts will be held in this account until the bank has opened the trust.

If anything else comes up or a better solution I will let you know as soon as I can. If you would like to contact me you can do so by emailing me at vejrfam@yahoo.com.

Donations or gifts can be made on the right panel of this blog or by clicking HERE.

Thank you,

Terri,George and Abby