Bone Marrow Transplants ---with caution

Please read the letter of Monica Coenraad, RSRT executive director, about how to approach the new find of Dr. Kipnis and his team. 

http://rettsyndrome.wordpress.com/2012/03/28/bone-marrow-transplants-proceeding-with-caution/

Their are important insights.

For the young mothers and fathers II

• Be soft with yourself . Be patient, it is a great challenge, but you will succeed. 
• Do simple step toward making life easier. Do not add to your plate. Ask for help... so much to learn on that subject. Do what you can, feeling that you are doing your best. 
• Your daughter will change when you will change. 
• Make her life beautiful, filled with love and care, it is a devoted work that I enjoy very much now. 
• Remember, let go of judgement, expectation and victim feelings, become knowledgeable, strong, loving, and more compassionate.  

For the young mothers and Fathers

I remember the time when it was difficult to accept Alexandra condition. Very difficult..... She was not what I wanted or expected. I found out about myself along the way who I am and who she is. 

It takes time to heal, and let grief go away. So much to let go! I had to take some conscious steps to accept and these are my recommendations. 

• Each time you think she is not what you wanted, switch your thoughts right away to a thought of acceptance. Like : She is beautiful. Watch yourself closely, do not let yourself go to depressives thoughts. 
• One things who was making me sick, was when I was thinking of all the things she will not be able to do., and I will not be able to do because of her condition. So stop this. Be vigilant with yourself. One important step is to not compare her with the others, but to recognized her qualities. 
• When I started to watch my negatives thoughts and started to replace them by positives ones everything changed.
• My recommendations is that you start to see all the small good things you can found about her. Tell her how cute she is, how strong, how interesting, how intelligent,how sweet, How much she is doing well. 

Rett Syndrome Research Trust

Rett Syndrome Research Trust

Bone Marrow Transplant

http://vimeo.com/38697609

http://rettsyndrome.wordpress.com/2012/03/18/bone-marrow-transplant-stops-the-development-of-symptoms-in-model-of-rett-syndrome/

Please read and watch this new incredible find.

ABM method #1

Some past years I heard about Anat Baniel Method. Someone gave me a DVD to watch and I felt immediately drawn and interested by the work of Anat. But, so hard to keep up with all of those new information's we received for our "different" child....it often take us months or years to process, understand what therapist tell us and most important make the right choice for our daughters. 

Alexandra receive very little therapy, my experience is often disappointing with the proposed approach. I feel very sure with my instinct and care for her, I do not fear her challenges anymore, accepting who she is. Our societies have made incredible progress in the care and integration. I have no doubt that the help, care, school education, transport, dialogue, material Alexandra is receiving has made the great and healthy child she is now and still I often do not agree with what therapy is bringing to us.  

Alexandra was born twelve years ago, and every years I see improvements in services and news products. 

But this is said, the medical approach , PT and OT knowledge still far behind what should be looked at.

When I take Alexandra to a pediatric specialist doctor or PT, they never look at her in full. Rett girls have a huge handicap with their body, the health of their physical  body should be of one first interest! Most place will just look at her legs and spine, on a small and uncomfortable table. Doctors are not interested to see if your child can make small movements with their body. They just look at : she do not walk, so......! This is very sad to me, because Alexandra can move allot, she has a tone of small movement to her repertoire and after all she is a full human being with incredible potential . Anat Baniel seems to pay deep attention to movement, because movements means life. http://www.anatbanielmethod.com/ more coming on the subject. 

Beautiful Girl

                          Alexandra you are so lively! 
                            A bright light in our life
                             We love U very much. 

Going out and about

Alexandra loves to go out. She gets kind of bored at home because she is curious about discovering new things. So most week-end we get in the car and go to the big city to get filled with new sensations and images. 

In the streets of Spokane WA, the KidsRock wheelchair is great and comfortable for Alexandra. I made her crochet sleeping bag just for the wheelchair, it works very well, because her legs can stay warm. 

Alexandra is happy in a coffee shop, it is pack with young students on their computer, chatting, and she delight herself on watching....is she looking forward to her teenager time? 

Experiences with Bamboo Brace

Alexandra is wearing her Bamboo Brace at http://professionaltherapies.com/PT-Bamboo-Brace-Adwords.aspx   It allows her to freely experience sensory game like; a box of dry beans.  

Alexandra does not show interest on wanting to touch things, but with her Bamboo brace she demonstrates that in fact she want to feel and experiences new sensations. 

She even wanted to put her foot in it. If you observe these pictures, you will see her engagement with the activity, her desire to do, and success and happiness when she is able to achieve her intent. 

Alexandra is smiling at herself, she trough some beans out of the box. The game was fun for 15/ 20 MN. I stopped when she was done. You can become friend with Bamboo Braces  @: www.facebook.com/TheBambooBrace