Skip to main content

Some updates...

Well, It has been a while since I have posted. I do have a few updates. I spoke with Christy, Cade's Dietitian in Fl and she wants Cade to start taking 3 ounces every 3 hours. So, we are and he is doing great with it! We went to the Ped. last Thursday, and he weighed in at 8lbs 15oz. (I will just call that 9 lbs :) and he was 22 inches long. He is def. growing, still slower than what would be considered typical..but he is making progress! As of today, he is now taking all 3 supplements...Fish oil, CoQ10, and L-Carnitine. I have not noticed a huge difference in awake time and energy yet..but didn't really expect to right away. Cade's main goals right now in PT and OT is his ability to reach and swat/grab at toys and gain head control. His arms and upper body are much weaker than his legs. We have been working with him and you can tell he wants to grab them so bad, but just can't get the coordination to do so. He will get it in no time! He loves to eat his hands and arms or whatever he can get in his mouth. It is so cute! We have noticed what it seems to be circulation problems. In certain positions his feet will turn purple due to poor circulation. This is common in PWS due to their low tone, but I will still get this checked out. The APX alarm charity contest is now over, and I am so happy to announce that we won  $130,000.00 for research!!! That is great news :) Thanks to everyone who helped with the vote totals. Time for me to get some sleep now..I am extra sleepy today! 

Comments

Post a Comment

Popular posts from this blog

Trust the process

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it.  Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...
Post a Comment
Read more

Happy 5th Birthday Cade!

I can't believe we are celebrating your 5th birthday today. It seems like just yesterday I was awaiting your arrival. Boy, what a whirlwind it has been since then.  I have watched you go from a tiny, helpless newborn to a boy who already has his mind made up about just anything. You have taught our family so much about being strong and loving endlessly. You bring opportunities that I never imagined possible when I first held you in my arms. Life-long friendships have been made because of you. I will always encourage you, respect you, be your biggest fan, your advocate, and your supporter. I will always hope for a brighter, more accepting tomorrow. But above all, I will always love you for who you are.
Post a Comment
Read more

Tired and Thankful

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...
Post a Comment
Read more