Grace for Rett » Grace's Life with Rett Syndrome

Seizures and Torture Devices

Grace finally received delivery of her new standing frame. Our dining room is now a landing pad for wheelchairs, eating chairs, standing frame, car seats, and tumbleforms. We should really have dining

room insurance incase someone breaks their neck upon entering our house.

The standing frame is just what it sounds like. A device you strap her into in a standing position. This encourages weight bearing through her legs and aids in proper body functions like drainage of kidneys which requires an upright position. I don’t know if she likes it in there but she doesn’t complain.

Last week she also received a sleep system which is a rather complicated bed device to keep her in the proper position while sleeping. She has ‘frogging’ of her legs and this device is a little cocoon to nestle her into.

We can’t be sure but she may have had a mini seizure a few weeks ago. While in her kitchen chair, her head fell back and her eyes were twitching and rolling around. This only lasted for 30 seconds and her dr is only concerned if it’s a regular occurrence.

This week has held many appointments for grace and next week, we have even more. We saw the hospital paediatrician and in two days well see the main consultant where our first concern to voice is the fact tha grace is taking in far less fluids than she should be. She will only drink from a bottle and she seems to be losing her sucking reflex. It’s such hard work for her to empty a bottle that she only finishes half now and she only does it twice a day.

Also this week, the first visitor came to view our home in regards to the council building an extension for Grace or otherwise modifying our home to make it more suitable for our new lifestyle. The main point for praying into is that the planning permission would be successful for adding on a whole suite on the back of the house. This is iffy as we don’t see any neighbours who have one so this could be due to the council not approving such plans and they give no preferential treatment in cases like ours. Other modifications will be ramps outside, door widening, etc. Even though this is being pushed through rather quickly because the therapists can’t believe the steepness of our stairs, the length of the hallways and the teeny tiny bathroom, the whole process will still be 12 to 18 months.

“Fun fun silly willy “-Pinky and the Brain



Michael - July 22, 2010 - 6:07 am

I love you Grace!

Loretta Steele - August 5, 2010 - 12:45 am

Wow !!!! Grace is so beautiful !!!!!
You would never know that she has Retts by looking at her in this picture. Love you Grace!!! SENDING YOU BIG HUGS AND KISSES
XXX000 XXX000 !!!!! : )

Kathie Ridge - August 5, 2010 - 6:32 am

just wanted to let you know that Gracie is very beautiful and she has great courage.for one so young.Beth you have a talent for taking great pictures.you are truly blessed.are they getting close to a cure for this or atleast to help with some of the problems,that she has.I have to admit I don’t know any thing about this.what causes this.any places where i can get more information? love Kathie

Sue Dales - August 5, 2010 - 11:22 am

Hi Elizabeth, thank you so much for doing this it is so informative and helpful to the rest of us. Though I knew most of it, there are certain reminders contained within that myself and some friends will pray into on Gracie’s behalf.

Susan - September 2, 2010 - 5:27 pm

Oh my, she is GORGEOUS!!!!!!!!!!!

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