The story continues

August 2006



The time has come again to tell you what has been happening for us in the last six months. It was a period of “Wind and dizziness”. Our two month rest (Honeymoon) after the last appointment helped us to reorganize our life with the program and make the necessary changes. We had the opportunity to go on vacation for two months.

We traveled around the state of Chiapas in car, bringing with us a small mobile stove to be bale to cook Rosa 's special diet. Rosa and Maria had the opportunity to see many places which they had only seen in photos and books.

Maria liked swimming in the ocean and Colon Lakes best, while Rosa affirmed, through facilitated communication, that she liked the museum at the Palenque archaeological site the best.









 



 



 

OUR ACHIEVMENTS AND DIFFICULTIES

PHYSICAL AREA

Rosa 's walking is improving continuously. She continues walking 90 minutes a day in three sessions and in three different environments, of which she most enjoys environment B (inclines and descents). For this walking session we go to a neighborhood that has these characteristics.

Rosa now walks with headphones due to her sensibility to sound. We look a lot for the best ways to protect her. After trying different types of earplugs we found that the headphones were the best option. She no longer jumps every time a truck selling water or gas passes by (these trucks are known for the loud noises they make).

Rosa increased considerably the distance of her walking sessions, reaching 1500m in a half tour. However, her mood varied a lot due to some unstableness of health during this period.

Her manual ability is improving constantly. Rosa continues hanging from her bar with a little help and now can support her weight for 30 seconds. She now joins her thumb and index finger to pick up small objects such as fruit or other food with much more frequency.

This ability, called cortical opposition will be of great importance to her and will mean, among other things, her transition to independence (to be able to dress herself, work, etc.)


 


The free gravity program continues with rolls and car wheels. Hanging from rubber ropes, she does these activities which make her seem like a circus acrobat.

They are helping her to stimulate her vestibular system and as such her balance has improved a lot.

The new Biofeedback program which consists of deep tactile stimulation of certain muscle groups was something new for us during this period.

These massages work with legs and hips among other areas and have helped to improve Rosa 's posture when walking.

 


 

PHYSIOLOGICAL AREA

Rosa continues wearing her respiratory machine at night. She also continues 60 respiratory masks a day, which help her achieve better oxygenation, and 6 cross patterning to improve coordination.

In this period Rosa began a new inhalation program of a mix of oxygen and carbon dioxide. The inhalations brought an immediate improvement in all areas: language, physical and intellectual. But they also produced counter affective results. Rosa started to demonstrate aggressive behavior, much more than is usual for a six year old girl. We had to suspend the treatment for a month and restart it with a lower frequency.

Rosa 's health wasn't so stable in this period. She didn't have any grave illness, but she suffered several times from a cold and small intestinal infections. We think the rainy season and the mosquitoes also had a negative impact.

The best news is that Rosa finally found peace with her intestine. For years Rosa has suffered from frequent bowel movements which don't let her rest and meant many diaper changes, bothersome smells, etc. Through a rotating diet, observing the reactions caused by each food, we finally found the perfect diet for her.




 

INTELLECTUAL AREA

The intellectual area always has a lot of surprises for us. In this period Rosa received a new home made Spanish book daily. The books have approximately 20 pages and the illustrations are separate from the pages with text. The text size is big and no page has more than 30 words. In this way Rosa can read independently and with great speed. The themes are more sophisticated every time. In this period she was very interested in subjects such as religion, different cultures, history, artist and scientist biographies, as well as the animal world.

Now the information we give to Rosa has to be very specific to catch her interest. She also likes documentaries and high content movies.

She now studies German and English, with English being easier for her. We had a visit from an English friend who is a German teacher. He was very surprised at the ease with which Rosa answered his questions and he translated from German to English and vice versa. He communicated with Rosa in English and she demonstrated very good understanding.

Rosa also continues seeing intelligence BITS with specific information about every BIT. Works of art, tourist spots from around the world and animals catch her interest.

Rosa is starting to write with facilitated communication, noting letters on a chart. After some initial difficulties she is doing it pretty well, she now writes words and pairs of words and we can now know more of her thoughts and feelings. Her understanding level in all areas of life is much higher than we had imagined possible.




facilitated communication

 

SOCIAL AREA

Rosa 's biggest problem in life is that she can't talk. It's possible that this is the reason for her social problems she has now. Her behavior is apparently of a very young child. We still can't allow her to go around by herself without her throwing things or kissing the dog. She is very hyperactive, sometimes angers easily and is aggressive, but who wouldn't be if they couldn't express themselves in accordance with their intellectual age.

Rosa learns quickly everything she is taught but she can't express herself with the same ease. We work hard practicing the facilitated communication. She is advancing well. Little by little she is overcoming her impatience and her joy is great on the occasions in which she can communicate something that was important for her, even if it's something simple like, “Mom, I want to leave”.


Rosa is showing her new teeth

 

For our family every day is a small battle, overcoming obstacles that grow like weeds in every instant. Darinel does the program in the mornings, and I do it starting at mid day.

Paying so much attention to Rosa also gives us more sensitivity to Maria and her needs. We appreciate her help in all areas. In spite of the mountain of problems we have, there is none that keeps us from following this way of life that is saving Rosa 's life everyday.

As always, we have received a lot of support in this period. Many thanks to the patterning volunteers and the friends who helped with the intellectual program and with translations.

 

 

 

 

It's always awkward to ask for monetary donations to help us resolve the expenses of the following appointment in Philadelphia , but it is one of the obstacles that we have to overcome. We will travel on September 9. We hope for your help and comprehension. Even if it's a little that you can give, every bit helps us a lot.


Sincerely, Elke, Darinel, María y Rosa
August 2006

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