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. 

Happy Holidays

Bon Anniversaire Alexandra

Alexandra turned thirteen year old last Tuesday the 11th. She had such a great time! Her school friends made beautiful paintings of castles, her two helpers gave her kind cards and little things she likes, hair clips, bandannas,  books. In the evening we made her favorite dinner " Une Poule au Pot", her grandpa and Jackie came, her sister, myself and Carver all enjoyed sharing the promising new year to a young lady....

                    Happy Birthday Alexandra

Alexandra is much calmer

It will be Alexandra birthday very soon, December 11th she will be thirteen. How time goes! Seems like her and I have been living for awhile together, and got very accustom to each other. She has not entered puberty yet, she seems to be at a 6/ 7 years old stage. This blog is about some of the changes who have occurred in the last month and half. 

Alexandra had a strange summer, she was somewhere else, very autistic, always a little tense, not present. At the beginning of the school year, I was trying to figure stuff out and did a bunch of blood test (see previous blog) something we had never done. Nothing came out as said, except a low level on vitamin D. I start to think that the eternal problem with constipation, who has been taking cared by Miralax for some years now, was after all not truly great and that Alexandra was still suffering from constipation without me be aware. ( after three or four days I didn't remembered when was exactly the last time...) 

I bought a daily calendar journal and some color stickers and start to keep track of any bowel movement and seizures. In the same time I got some enzymes ( at each meal) for digestion recommended for her and start to give some (lactobacillus acidophilus, bifidobacterium bifidum, lactobacilus salvarius) from Fortefy( one /day)

keeping track of the BM shown me that as I suspected her BM were very irregular, so I start to adjust the Miralax in consequences something I never really understand before. From than if no poop,  more Miralax that evening, poop and we keep the normal dose( I only allow one day without poop)   Result is that Alexandra is much more agreeable  has less of her breathing episode, seems less stressed. Also if Alex is not comfortable I can be more clear that her BM is maybe the cause or not. 

Alexandra last month and a half was not all good on the BM , because we were into figuring out, but something different has been happening. She is calmer and takes everyday very long nap in the afternoon. Something she has never done regularly. We had to be driving or strolling or be in the middle of the crowd or her to nap ..., but she just didn't wanted to rest in bed in the afternoon at home, and if she was,  it will be only for  20Mn or 1/2 hours at the most, and a small noise will wake her up. But now , everyday, she do not resist and sleep for two hours! It just feel right to me , she has always been so hyper, her hands, her breathing, just who she is, in perpetual movement....feeling the quiet and the rest in the house sound so peaceful. 

So I am thinking that maybe the enzymes and the Lactobacillus have been helping making her much calmer and able to rest.! Should follow. ..