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I love my kiddos!

Yesterday, we decided to go to the Splash Park in Bayou Vista. We only stayed for about an hour but Carter had lots of fun! It was a really cute little place for kids. They had plenty of shade for Cade, and of course he was content like always.

Carter & Cade with their shades on


Cade chewed on a frozen teether to keep cool


Dr. Miller called in the prescription L-Carnitine supplement for Cade to start. His first dose was yesterday! There has also been a lot of talk lately on the message boards about this "cactus plant" that is under research to suppress the appetite in people with PWS. This extract is now being studied in the PWS population. Substances and medications don't always affect people with PWS the same as they would affect you or me. So, the research will tell if it is safe or effective for PWS. There is an Australian family who has experienced very good results from it. So, hopefully the research will be a success, and by the time Cade is food seeking we will have something to help! I love hearing about new research studies, this is why funding for research is so important! I am currently working on starting an annual fundraiser for FPWR, Foundation Prader-Willi Research. All money will go to research to find a cure for the hunger.  :) The same person that is using this cactus plant with her child, has also written a book to help families out that have a child with PWS. Here is some of her e-mail she sent me....

Hi Maegan.


A vulnerable time I expect. How is he doing?



I have a book just recently released. It will help!

It will help with creating early intervention for you specifically - within your own values and needs. You can pick and chose ideas and exercises which suit your little boy Cade. Nice name. I have never heard it before.

I found the most important thing to do at the start was to make sure Mia was getting her food, being stimulated enough to use her body but also being held or wrapped in positions that were balanced and symmetrical. Mia had many twists and turns through her body and was exceptionally low tone. She also had seizures and was asleep nearly all the time. Our story will be a little different than yours because every child is different but the necessaries of everyday life are still the same.

My book outlines our story and what we did and it will give you something to bounce off. How to help with tone, voice and eyes etc.



You probably won't need to worry about food seeking for a while so by then I expect we may have some answers to help you.

I am involved in research to do with satiation right now and there are people very concerned with finding a cure for this aspect.





Try to find a supportive pro-active group not one focusing on trouble.

Source your governments help too. They may have some systems in place.

Check out your early intervention systems, case management if they have it and get your self onto waiting lists for any services.


Put all these in place so that you can live a more gentle home life with your son and concentrate on him.



In the meantime below is the book.

I have put my heart and sole into it and every idea I have sits within it.

All the best. Remember every child has a rich potential no matter what the difficulty!



Mia is now in Prep at school with her twin brother. Doing well.

It is so good to come in contact with such positive people like her! I ordered her book, and can't wait to read it!!! Cade's private therapist gave me a book on Infant Massage, and I just finished it. It was wonderful! I have now started doing massage techniques with him daily. It really is key in development and infant stimulation. The power of touch through massage works wonders. I have learned so much through this whole experience with Cade. Each day is a new learning experience, and call me crazy, but I love it! I really wouldn't have things any other way. I know it is pretty easy now for me and I am well aware that tough times are ahead but I know he will succeed. His progress has already come so far, how could I have any doubts?



 

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