
My husband and I were blessed with our amazing son Max who is now 9 years old. Our fighter had a rough beginning when he entered this world and fights every day. In September of 2011, Max was diagnosed with Prader-Willi Syndrome. After meeting with doctors and doing research we are still learning every day. To learn more about Prader-Willi please visit www.fpwr.org. Follow our blog and keep up with our family and Max's progress!
LA 2017!

LA 2017!
Wednesday, December 28, 2011
Max having fun!
Max always hates getting on his trampoline for therapy, but when his cousin Isabelle was over along with cousin Isaac and grandparents she got on there with him and jumped and jumped and made it so fun! Max had a blast! :) Thanks Isabelle!
Thursday, December 15, 2011
Max stood up!
What a great day! I know we all expect and wait for the day our child will pull to stand on their own, but Max has been in Physical therapy literally his entire life...and has worked so hard for everything and today on his Daddy's birthday, he gave him and me of course an awesome gift! He stood up in his crib during his nap time on his own and started pounding on the wall in play! Woohoo! And...Steve happened to be around to see it in the monitor for his first time!
He been starting to try and pull up but this past 24 hours has been a huge improvement and this was awesome! Go Max!
He been starting to try and pull up but this past 24 hours has been a huge improvement and this was awesome! Go Max!
Tuesday, December 13, 2011
Recipes
Max is in a strict 750 - 800 calorie day including milk so figuring out meals is tough!
Here are a few I have tried...tonight Max had 1/2 cup of Giada Whole Wheat pasta with 1/4 of a cup of Light Prego tomato sauce with one cup of mixed steamed veggies tossed all together (we had the fresh frozen mix of asparagus, squash, carrots & cauliflower) for a total of 190 calories. It is a bit higher than normal, but he had eaten less at lunch.
Another meal he likes is some sauteed Extra firm tofu (lightly dusted with olive oil and a dash of salt) with 1 oz. black beans, 1 cup of steamed veggies of their liking for 142 calories. Add some fruit is their daily intake allows. We had a few chunks cut up of Cantaloupe...did you know a whole cup is just 53 calories, so just a few chuncks is nothing!
Here are a few I have tried...tonight Max had 1/2 cup of Giada Whole Wheat pasta with 1/4 of a cup of Light Prego tomato sauce with one cup of mixed steamed veggies tossed all together (we had the fresh frozen mix of asparagus, squash, carrots & cauliflower) for a total of 190 calories. It is a bit higher than normal, but he had eaten less at lunch.
Another meal he likes is some sauteed Extra firm tofu (lightly dusted with olive oil and a dash of salt) with 1 oz. black beans, 1 cup of steamed veggies of their liking for 142 calories. Add some fruit is their daily intake allows. We had a few chunks cut up of Cantaloupe...did you know a whole cup is just 53 calories, so just a few chuncks is nothing!
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