Everyday is a miracle

Everyday is a miracle, unique, magic and so beautiful. In a flash, life change and transform, bringing in her metamorphosis a multitudes of different aspects of herself. Enjoy the changes. 

Chaque jour est un miracle, unique, magique et tellement beau. En un instant, la vie change et se transforme, amenant dans sa metamorphose une multitudes de differences dans ses aspects. Prenez plaisir dans les changements.

Cruise vacations

I just went on cruise for 4 days in Mexico. It was the seventy birthday of my grand mother Jennifer. My ant Shannon helped me fligh with my sisters and my two cousins to LA , where I took place on the Carnival cruise. My dad met us there and more ants and uncles.It was a big party. You can see me all excited in the arms of my daddy. Next to him in black my sister Gabrielle, and my grand mother is the one looking down behind my sister. I am back home now, to Sandpoint with my mom who  missed me very much.

The life of my stuffed animals

I like to sleep with my " babies " (that is the way my mom call them). The white rabbit is from my sister Gabrielle, the monkey is from my dad and I choose myself the little cat in the middle last year at the Shriner Hospital. 

They sleep like that  curled around my neck every single night. I have more babies, but these ones are my favorite. Carver thought they were neck warmer...! He is kind of funny...!  No Carver, they are here to please me, make me more comfortable and reassure me. He wonder if I really know that  ....! 

But I do love them very much,  as you can tell, and my mom is right when she creates a loving atmosphere around me. 

When my body control me

When I was very young, I was able to use my hands and fingers. I loved books and turned the pages myself. I was also able to control my fingers and pick even a small cheerios. That was long time ago, I was between 4 to 10 months old. After those great time, my hands went to my mouth, I became absorbed by the stereotype, and this is when my body start to control everything I wanted to do. 

As Barbo Lindberg describe so well, " it is not themselves who rule their bodies and emotions: rather, it is the other way around..." 

So here I am, ready to go swim, my mom took my gloves off, and my hands are stuck deeply in my mouth!.

This is certainly not what I wanted to do, like many of others movements that happen to me all the time. 

I am slowly getting accustomed to my body own control, my eyes abilities to focus is becoming much better,   I handle to have my hands takes off from my mouth, with gloves or Bamboo braces ( see post Bamboo braces ), and by knowing myself better, it  has allowed me more purposely intents. You can't imagine in which kind of chaos I have to live, but if you are patient with me, reassuring, slow, observing, loving, and can create a safe environment filled with rhythm it will help me to do better, everyday a little bit more. 

Well being

The well being of a Rett Syndrome girl is something primordial to her health.

Keep her very clean

Pamper her...with essential oils, we like  Frankincense and Lavender

Buy or make pretty napkins fold in a triangle to go around her neck

Give her massages and a lot of  warm bath

Make her hair look pretty

Tell her she is the most beautiful girl in the all world

Look for comfortable clothes, we make our pants 

Everything has to be comfortable

Put layers of clothes, that can be take off

Give healthy food, fruits, veggies, grains and meat

Touch her, talk to her

Plenty of kisses

Give her specials stuffed toys for the night 

A lot of water

A lot of care

A lot of love 

High chair

      

I got this high chair 3 years ago. My mom was not sure that I will be able to sit correctly in this chair, but she thought it will be the best for me.

 I need to tell you that when I was younger, my mom, hold me on her laps for every meals. Breakfast, snack, lunch, snack and dinner. Holding myself on a high chair became difficult around 15 months old when my syndrome went full blow. At that point, my mom wanted me to have a good posture and support, and holding my balance was so challenging that I was not able to focus on the food properly.... 

My mom did what her instinct told her to do, holding me on her laps until I can do it by myself again. By being on her lap allowed me to feel supported, I was not scared of falling, but I was still working my muscle to maintain myself. My mom body was moving with mine...

I have an excellent  trunk , neck and head control. I spend most of my time on the floor. My legs and feet are my problems, but I am so happy to be so strong with my upper body. To get back to the chair, I got a wooden baby high chair for some years, it was working well, until by feet were not touching the wood support.....I was getting to tall for a baby high chair. My mom knew about this Swedish designed high chair, and she thought that it will be the best, because it grown with you by moving the wooden parts, seat and feet support.

At first I got a little scared and was shaking on my chair, but my mom got someone to add woods bars on my trunk sides...and with a short time I got use to my new chair. 

I think that I have a great position, this chair that you can get from  http://www.keekaroo.com/highchair.html

can be ordered with a cushion that helps support me since I do not have very much fat on my body, it is very comfortable....no pain there! 

When we eat out, I am starting to be able to keep myself on a normal chair, so it is great to feel able to be like everyone else. 

What is her thinking?

It is hard to know what go on in Alexandra mind....In these two pictures we can perceive two different expressions and emotions. Pictures are catching those moments so well, because they happen all the time, but so fast that we do not see them. Alexandra is twelve and it still hard for me to understand or know what she understand or know. Like Doctor Rett said " their eyes talk...", I can comprehend these words more and more. I believe today, that she is understanding more than she can let us know, her eyes are so bright and full of intelligence. I think that she is trapped in a physical body who do not want to do to much for her. 

I want to treat Alexandra with great respect for who she is, and acknowledged the part she plays in her life. I will encourage parents of Rett girls, to talk to them a lot, and give great attention to their needs. They need allot of pampering. They are special, and it remind me think that when young children meet Alexandra they like to ask, " why she is like that?" and I like to answer them ..." because she is half fairy..." so they look at her with bigger eyes and smile to her in awe. 

Car Seat

Alexandra has been using her Britax car seat for 7 years . It is very comfortable and still fit her very well. Medicaid covered the cost . A link for  information at   http://www.showeryourbaby.com/brtrplspneca.html  

She love to go on a car ride, it calm her Rett related breathing problem, she can watch the surrounding by the window and enjoy a passive ride. 

Two minutes later she is falling asleep. The belt is actually not secure properly, the middle point should be higher, we just didn't put it well. I had to put a box, one of this basket from Pier 1 that I turned upside down.  It allowed her feet to be touching something. I think this chair is very good.  Have a great day.