My sweetself

Every Monday my mom volunteer at my school to take me to the pool. Now, seems like I look forward to Mondays, because it is such a surprise to see my mom there, waiting for me to come out of the bus with all my classmates and teachers. I love the water...and I love my mom.The pool is to cold for me, but she takes me to the hot tub and then... that is when we start to share such a good time. ....my mom love me. She just chose this picture even if it is a little blurry because it speak of the way I look at her...so much love between us. 

                                                             Those are really our happy times. 

My mom is an artist

My mom is an artist, she paint beautiful imaginary scenes. She perceives a microscopic and infinite world, where life express itself in a triumphant beauty. She uses watercolor paper 300lbs or cottons canvas to paint with acrylic. 

Celebration toward the day, was part of a set of 4 paintings each with a different view of Morning, Day, Evening and Night. She is often influenced by season and time of the day, mostly related to natural events and  time. 

This is her studio. The old garage in the back yard was transformed into a gorgeous art space. She comes here every day that I am in school to work. 

This painting is called " Circle of Life". It symbolize that life has no beginning and no end and that every part of the creation has a purpose. It measure  30 inch X 30 inch with acrylic on canvas. 

   

My mom exhibits in galleries and in the summer, she is part of a Studio Tour. People come to visit the house, the garden and the studio and my mom shares with them her way of working and display. 

Drop of Sweetness , 30 x 30 acrylic on canvas is very energetic painting with a lot of details, it is also soft and neutral, it show an hummingbird looking for his food. 

Immutable Laws, 23" x 22" , Mixed Media on watercolor paper, speak about  the natural world containing the elements of water, air, fire and spirit. The simple truth of the unchangeable laws of nature. 

You can see more of her work at    http://catherineearle.blogspot.com/     or like her page on Facebook at Catherine Earle Art  . 

Apraxia and action

Ma grand- mere vient juste de m'envoyer cette boite de music. Je suis interessee, mas c'est tellement difficile de commander mes movements! Ceci est due a mon apraxie. L'apraxie est un signe clinique qui décrit une incapacité à effectuer un mouvement ou une série de mouvements sur consign.  Pour une petite fille atteinte du Rett syndrome, je crois que c'est la chose la plus handicapante. L'apraxie est tres, tres frustrante. Pour etre honnete je deteste l'apraxie. Cette impossiblite est tellement forte dans moi, qu'elle me paralyse totalement. Je sais, je veux, je comprend, mais je ne peux pas....imaginez si vous pouvez... Comme toute chose je me suis habituee, mais quand meme , imaginez recevoir un nouveau jouet, vouloir le toucher et meme l'observer, rien que ca, et ne pas reelement pouvoir.  A ce moment la ma respiration s'augmente, mes apnee deviennent plus fortes, ma tete se tourne a l'oppose, ma main jette la boite a music (comme si je la voulai pas...) je n'ai plus de patience , je ne comprend meme plus...enfin, vous savez... Tout ce qui est difficile ou qui engendre trop de memoires sur mon apraxie, est si difficile pour moi, que des fois je prefere ne meme  plus y penser....

My grandma just sent me this music box. I am very interested, but it is so hard to direct my movements! This is because of my apraxia.  Apraxia is a disorder caused by damage to specific areas of the cerebrum. Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements,^[1] despite having the desire and the physical ability to perform the movements. For a little girl with Rett Syndrome, I believe that t is the most handicapping thing you can have. The apraxia is very, very frustrating. To be honest, I hate apraxia. This impossibility to carry movements is so strong in me, that she totally paralyze me. I know, I want, I understand, but...I can't ... imagine if you can....Like everything got use to it, but anyway, think to get a new toy, you want to touch it, or even just observe it, and you can't. At that moment my breath change, my head turn in the other direction, my hand through the music box away ( like if I didn't like it...? ), I DO NOT HAVE PATIENCE ANYMORE, I EVEN DO NOT UNDERSTAND ANYMORE ...well you know..... Everything who create difficult memories due to my apraxia, will not please me anymore, I prefer to not think about it anymore... 

But observe those pictures, I am looking, I am interested , I am trying.

 Mais observez ces photos , je suis interessee, je voudrai essayer.... 

Alexandra often give up on activities, so much that it is hard to understand her. We have been playing with balls, she is able, to send it with the reverse of her hand, or with her feet, I have to keep the game fun, happy and going . Sometime it is even better if I kick the ball everywhere, make it more fun, more fast, she get in a more reflex time, and actually can play and enjoy the game. 

 Tres souvent Alexandra ne veux meme pas jouer. Nous jouons avec des balls ou ballons, elle arrive a la relancer avec le revert de sa main ou son pied, mais il faut que je garde le jeu tres vif et amusant. Des fois, c'est mieu, si je tape le ballon avec mes pieds, vite, et partout, elle a besoin de moin penser, et peux enfin s'amuser. 

My Homeland Sandpoint Idaho

My Home is in Sandpoint Idaho. I have been living here for the last 10 years. I love it. Sandpoint is situated at the border of the Lake Pend Oreille a vast body of water in the Northern Idaho Panhandle. It was the home of the Kalispell Indian people until the beginning 1920. Local animals included, moose, mule dear, elk, black bears, bobcats, coyotes, bald eagles, hummingbirds, ospreys, Canadians geese. A true wild place. Our community is very strong with 7365 people living in the town, it is easy to know many of the villagers and get a friendly feeling. 

  

View of the lake Pend Oreille. We are one hours from the Canadians border. In the summer everyone enjoy the leisure of swimming in this beautiful sitting. 

This picture was taken during the fall. We really have 4 seasons and each one show an extreme contrast. I can't decide which one is my favorite.... 

Winter in Sandpoint. The Third Pier is just a block from my house. My mom likes to take me to this spot, spring, summer, fall and winter. We also have a ski resort called Schweitzer Mountain , are we lucky? 

Sunset at the City beach park. A place where we like to go in the summer. Hope you enjoy my homeland. 

Painting with the Bamboo Braces

My mom is a painter, and I personally love art. We have art all over the house and I have always looked deeply into the forms, effects and colors of a painting. It mesmerize me. This year my mom decided to have me make a painting every Sunday. I am wearing my Bamboo Brace for the occasion. The bamboo Braces  by Professional Therapies are made of a like swim suit fabric, they Velcro around the arm, and along the inside of the elbow you can tuck in  a piece of a plastic bar who come in many thickness and strength for me to not be able to bend my elbow. I am using the size one ( for the inside bar), who still very soft and allowing some movement. Please see where you can get the Bamboo braces made by these wonderful people. http://shop.professionaltherapies.com/the-bamboo-brace.html 

Voila, one of my painting, my mom gives me a watercolor paper that is wet, and she squeezes two colors out of a type of finger paint, or tempera. The Bamboo Braces help me keep my hands stretch out on the paper....and not in my mouth !!!  : )

I make small movements with my hands and fingers, I like it, but it is also difficult. It takes a lot of energy and concentration for me, so the session is pretty short. I have made ten paintings. All with different mix of colors. I mostly use the Bamboo Brace for painting and others activities who involve touching things. Like a box of beans, or sand, or a ball with texture. In these pictures I am wearing the Bamboo Brace preschool, but we just got some new ones of the early grade size. Much better for me.  

Thank you to  http://www.professionaltherapies.com/Default.aspx

Gloves and face rash

Alexandra started to wear acrylic gloves/ mittens many years ago. At first only one glove was necessary for her to not put any hands in the mouth, but now she needs two gloves and she brings both hands anyway to the mouth. But she likes it and we like it. She actually wears her gloves from morning to night. We have many mittens that we change when they are getting wet. She likes it, because it relaxes her. Her hands are less violent in her mouth, it absorbs the saliva and she somewhat more at peace. 

Alexandra with both hands in the mouth, typical of her manifestations. I was hoping that it will change, but it still there. Sometime more then others time. The mittens allow her to be more present and open. She does not mind them , at the opposite it bring her centering and calmness.

 

Going through Alexandra picture to make her portrait collage, I realize how much her face was marked with red rashes spots. At some point, years ago it got so bad, that she got infected on a cheek. I have some different idea of the cause.

 # 1 I believe that digestion problem will cause rash on the face. When she was young the doctors didn't recommend us Miralax, a powder for constipation. Going to the bathroom was a real problem, and I think that it caused her a lot of her redness on her cheeks, plus much more unconformable feelings, more stereotype of the hands and more cries. ....I know that it is overwhelming to care for our little one so much and for everything, but if you are reading me, please put huge efforts toward their constipation problem. If she is more content you will be much more happy too. 

Seems like Alexandra is also reacting to some specific food, the saliva from the hands in the mouth add to the rash situation.

 # 2   Some food allergies? 

 # 3  Stress will cause rash so lets do anything to have them comfortable, calm and content. Be careful their stress can be caused by to much happiness too, Barbro Lindberg talk about it in her book  http://www.amazon.com/Understanding-Rett-Syndrome-Practical-Therapists/dp/088937306X  

The other thing I will recommend and it has completely stopped the rash, is the use of http://www.bachflower.com/Rescue_Remedy.htm " the rescue remedy cream" from the Bach Flowers. A miracle on Alexandra face. 

Alexandra faces

The last twelve years of Alexandra filled with many moments to cherish. You are loved Alexandra.Your maman

Jogger Stroller for special needs kids

Alexandra has two others strollers after her wheel chair. This one is a jogger stroller made for special needs kids. It is bigger than a standard jogger stroller. It is called a AXIOM Mobility Chair, this is the size 2. It is better than the wheel chair for going on long walk or country style paths. It is not has good has it can be, the sitting at the hips level is not tilted to a 45 degree angle so Alexandra has tendency to slide off, but happily the belt secure her in place. I do not like the shoulders straps, because they are not well place too, and Alexandra love to be free to move to a straight sitting position. I cut the straps and sew them back into a better place , as you can see I put something ( the pink towel) under her upper legs to create a 45 degree angle. I also had to make a cushion to go under her feet for a proper seat. 

The stroller is good anyway, just have to be adapted. On the first picture the stroller has a single front wheel  but in the second pictures we used the two wheels to navigate better in town, crowd or stores. The stroller fold very easily, kind of flat, but it keep its length. It is pretty light. 

Here Alexandra is sitting and holding herself in a sitting position, she is secure by the hips belt only. 

I am planning to get an upholstery person to fix the stroller better than what I did. Make a small slanted 45 degree cushion for the seat and a slanted cushion for her feet. The other stroller we have is a MClaren stroller that we really like too. I do not have pictures yet, but will show in a future post. I bought the Axiom from http://www.adaptivemall.com/ who ordered from  http://www.adaptivestar.com/  and it took very long to come, the factory was changing ownership. But the company was very good. Please do not hesitate to contact me for details and experiences with this product. 

I am growing and changing

I am twelve for 2012 , that sound very good to me..! I am growing and changing, I feel with every year who pass, so much better. So courage to the new little ones, and courage and strength to their family, life will get better soon... we are wishing you care , love, positive attention, more strength and more courage for 2012, and maybe a cure for us all.. : ).      

My seizures # 2

Please read my seizures first.....this is next. So the rash was not from the drug, but anyway I was looking drug when my mom had to augment the dose....we finally got it right, no more seizures and lower dose, I take two pills a day, very easy to take, small it melt in the mouth with my food, each one is 25mg. Drug can be a relief, even when we do not like them. I am seizures free for a year now, I do not feel drugged and do not looked drugged, and I actually feel better than ever. We hope that this ideal setting is going to work for longtime, lets cross the fingers! 

  I have to add that during all of this, my mom went into super mom action. She also contacted a Homeopath who's daughter forty years old has Rett Syndrome, he gave me only one treatment, who seems to helped, she also in the same time, gave me a treatment with the Bach Flowers for my emotions and started to use the Rescue Remedy cream on my face.....she did a lot and we do not exactly know what worked, but I changed and my skin on my face never got a rash again. She put the cream often on my cheeks, Carver call that, the 24 hours SPA, but in the meanwhile I look much better and feel much better.

Retts' mom have to brainstorm about Rett symptoms all the time, interesting but hard work. My mom likes natural things, when we visit doctors she always trust her intuitions, and we often leave their offices with nothing from their knowledge. Personally I trust her and I think she knows when she has to try something for my best interest. I am doing really well, she attend to my needs in details, at all time, with so much care. I am responding with grace and contentment to her love for me.

Thank you to my mother all the mothers on earth.         

My seizures

I started to have seizures for the first time two years ago in January 2010. My mom and I were so happy and proud, I was a Rett without seizures.....we had no ideas actually what seizures were. But never to late, in December 2009 just for Christmas time I got something like the swine flue! Fever, cold symptoms, and more high fever , my mom took me to the doctor and with some antibiotics I felt better very fast.....until two weeks later January 2010 when I got my first ever seizure waking up, I was with my dad. 

He called my mom right away, and he told her that I looked strange, that my eyes were wide open, I was shaking and felt asleep again and again with some of those weird episodes in between...?

Welcome to seizures world! I soon was having seizures one and off in the morning just when I wake up, shaking one's and then gazing one's in the afternoon, always very close to my nap or awakening time.The doctor said that it seems likes I was having seizures and we scheduled a EEG. This was not necessary, I didn't get seizures during the EEG, but the physician that day was wondering what was going on when I was holding my breath....!!!! My mom and my pediatrician didn't want to start me on med, you have to know that I had never taken any med yet, I was healthy and meds were scary. They started me on vitamins B6 one a day, it worked really well, I stopped having seizures for 6 months. Then we had to go to two B6 pills, until 6 months later when my seizures came back. You are not suppose to play with B6 it can be harmful, so we had to try the meds and my mom was very anxious at the idea...

 In January 2011 we tried Keppra, it was the one without too much risk...but it made me so druggy, I was not holding my balance well, I was looking drugged...very drugged. I was not the same person anymore. My mom took me off of those after three days. So we tried Lamotrigine or " Lamical ", but this one was maybe going to give me such a rash that I can be forever disfigured with a horrible red marks on my beautiful face..? I am not sure I minded all of this but my mom did, and she was like a good mother watching for any sign...For the details, you know that us Rett girl, get saliva rash very easily on the face, we can also react to some food, so of course I has a rash, and she took me to the doctor to be check every two days.  See next blog Seizures #2