Make a Wish

In May 2012 we contacted Make a Wish foundation http://idaho.wish.org/. Alexandra wish was considered. and in May 2013 Alexandra is getting her wish granted...Make a Wish had a fun party for her, we are all flying to France June 21st.

Late story and Make a Wish!

           Make a Wish  Foundation takes

                     Alexandra to France...

Make a Wish  Foundation  Idaho took us to France in June 2013! It was one of the most amazing gift Alexandra received and thanks to her and Make a Wish we all followed in her journey to South of France to visit the French family.  

Alexandra and her mom at " les Jardins de la Fontaine" in Nimes. One of her mom favorite place, Alexandra like it too!

At the beach, it is the first time that we are traveling with Alexandra wheelchair. It was the best, we took the plane , the train and rented a van. Kids Rock wheelchair. 

Alexandra just enjoyed going out to the most remote towns. Here in Saint Guillem du Desert, she is all smile.

Can you believe that Alexandra is traveling all the way from Idaho USA to France and its monuments. Here Le Pont du Gard more than 2000 years old  Roman aqueduct. The place has been paved and Alexandra wheelchair went everywhere. Grandiose.  

Alexandra with her cousin Marianne, they both delight on the crowded and touristy streets. 

Marianne , Alexandra and older sister Gabrielle, au Grau du Roi France, playing teenagers....

                       Thank you , Merci, Make a Wish!

                   http://idaho.wish.org/

Too Cute

Alexandra smile has changed. She got a permanent front tooth pulled a month ago. The lesson is that sometime, maybe very often, you are the one who has to ask or tell your doctors what to do!
Her teeth were becoming cluttered and no one was saying anything! So I ask , and I was sent to my orthodontist. He told us to pull one teeth and it immediately made a big difference, because the one from the top was clutching on the one of the bottom. It was kind of a difficult decision, because you are never sure that you are doing the right thing...but I trust him, and I also trust my own intuition. Like her smile? Too cute.

iPad for Rett's

Alexandra got a iPad some months ago. It was offered by our  running team for Autism by " Laughing Dog Brewing" in Sandpoint ID. We didn't know  that the iPad will be interactive enough to interest Alexandra, teaching her for the first time, causes & effects. If you can, get a iPad for your daughter...

We first started with Fish Pond , who even with  gloves( if they humid enough ) allowed her to scared the fish away, hear the water ripples  watch the scenes with interest and surprise as the fish come back! 

Than we added stories and music games.

                        

I am going to give you a list of the apps she likes. I just introduced a ABC teaching app that she can not  use by herself, but she likes to watch it and have me talk about it. We write her name, play flash cards and what is important overall is  her attention to the activity. Alexandra is severely impaired with the Rett syndrome, her hands are constantly in her mouth and she has strong breathing episode. But the good new is that she can activate a iPad enough that she is active with something!

List of the Apps we like! Alexandra is 13 years old, but really even my oldest 16 years old and her friends enjoy any type of game on the iPad.....and myself too. 

Music Sparkles,       Miss Spider's Tea party        Animal Peekaboo               Virtuoso

Songs for Kids         Dooddle Buddy                    Write my Name                  Uncolor

Peek a Zoo              Letter School                        123 Kids Peekaboo           Sound Touch

R- tap Drums

Book Holder

I have finally found a book holder for Alexandra in December for her birthday. She loves images and to have someone reading to her. It was difficult to have the book flat on the table , where she was not able to really see the images and text, plus she was getting the lights reflection . I knew that a book holder had to exist, so I went on Amazon and found this sweet bamboo book holder for less than $30. It was under the category "cooking book holder". We love it and she does too!

A little thing who makes reading easy, and bring so much more educational and happy time to Alexandra. 

Medications side effects?

I suspect that Alexandra was having some side effects from her seizure medication for the last 8 months! She was on Lamotrigine for a year already, but some spare seizures came back, so our doctor decided to add Onfi. Alexandra takes very light doses , she is so light in weight and sensitive to medications. Anyway, I took a very long time to have her on the full dose of her last medication the Onfi, just watching effects and if seizures were presents. 

The seizures never disappeared, but were only like what I call twitching seizures, or she was having a real seizure every twelve days or more and not with a lot of effects. So I thought that the new med was kind of working, until last month when I had reach the complete dose level of the recommendation and Alexandra was still having seizures once and a while.

 I told the neurologist that Onfi was not working, and after a visit he decided on another drug, Depakote. We had to slowly switch,and stop the Lamotrigine and Onfi and this is when it became clear to us that our true Alexandra was finally back!

The differences is hard to describe, I kind of talked in early post that Alexandra was strange and different , but that I was not sure what it was.....but now I am pretty sure that it was a side effect of the medication. 

She was overall never really there. Hard to catch because our girl are always kind of strange! Some days are fantastic and some days just do not work! But there it was even more, it was a very light veil between her and us. A not able to reach out veil.

Now she is all there, her eyes and her smile are very present, and she want to listen and be part of everything.  I am so glad..... 

So be careful, and watch closely, I have just learned a lesson. 

Massage with Rett girls

I massage Alexandra often. For this I use Olive oil, Coconut oil and Lavender essential oil.  This is simple and maybe the safest and less expensive. I take a little plate where i pour the three. I sometime use only one or two . I pour two or three drop of the lavender that I also use for her bath mixed with Epson Salt. I send Alexandra to school with a small pot of the coconut oil so they can massage her hands during the day. From the time I start to use the coconut oil Alexandra stop having redness or problem with her skin on her hands. I like it very much , because it is fine if she put her hands back to her mouth, Coconut , Olive and Lavender oil are safe to be digested.  I put some on her face, but also on her little derriere when I change her diaper. No rash or sore and she always smell very good. Once a week after the warm bath, I massage Alexandra full body. I do a instinctive gentle massage. I try to get in touch with her body and gently massage her everywhere. I insist on the wrists and ankles, hands, fingers, feet and toes. I also do her belly, her front shoulder, legs, arms. I reach under her hips to the spin  to relaxes  a little her basin.  I massage her back when I can and finish by her ears and a small touch to her face.