Skip to main content

Phase 2A

Lately, we have had a major issue with Cade's hair. It really upsets me because hair is important to me. I know things could be much worse, but still it is my guy's hair. Well, for the past few months I have really noticed changes. Very brittle, fried, and damaged looking. We cut it short and it looked a little better but it still continues to grow out fried. Now, I notice hair loss. Spots look thinner than others and I can gently pass my hand through the top of his hair and a few will come out. Boo!

We have been trying to figure this out. We, as in his Endo in Florida and I. Dr. Miller ordered a whole crap load of labs and everything seems OK.
Thyroid is functioning on the low end of normal, so for him may or may not be "Normal." Go figure. Vitamin A is high...Weird.
IGF-1 levels are high- so we have to come down on Growth Hormone..This is proof that he is going in to Phase 2A (increasing ease of weight gain, slow-down of gastric motility)

And so it begins...DIET will be everything from now until forever. Not that it wasn't already, but it is more reality for me now that I know from the blood work that he is in a new phase of PWS.

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