Our So-Called Life.

Come on, Will you?  Today and everyday for the next 16 days? Just click on this link, http://communities.challenge.gov/submissions/6800-take-one-small-step?notice=success#vote_submission_6800   and then that is it, DONE! It means everything to us and we thank all of you who are helping us out!

Dear Tanya and Keegan Johnson, Since, I have finally gotten back to normal here at home I can do what I have been longing to do since I arrived in Toronto and that is thank the both of you. I really just want to thank you from the very bottom of my heart for giving my husband Jake and I this opportunity. I know there are others that I owe thanks to as well, and Thank You to all who have helped make this possible. I remember getting the phone call saying I was the winner of the trip, and it was so surreal. I had so many mixed emotions...I was excited, nervous, happy, and thankful. I never win anything, and just couldn't even believe that I had actually won! So, then the planning began. I pleaded with Jake to please come with me. I explained how I needed him with me and that it would be so much fun. It took him a while...( a long while) to agree to come. He made sure I knew that this was only for me and that he really didn't want to go. He didn't want to meet other...

http://www.fpwr.ca/2012/announcements/en-top-5-reasons-you-should-vote-prader-willi-syndrome-to-the-white-house/

I remember like it was yesterday staying glued to the computer day and night...just searching. Searching for information on PWS and reading through blogs. Kelle Hampton's blog is not about PWS, but I relate to her in every way. Her outlook on life mirrors mine and what I want mine to be. I remember reading Nella's birth story and it just sent chills down my spine, and still does. I e-mailed it out for my family to read and even read it myself to some of my family. I wanted everyone to know how beautiful our lives would be because of Cade...not how hard and miserable some thought it would be. I love, love, love her blog and can't wait to start on this book, Bloom.

Just look at Cade's hair. It was perfectly fine at Christmas time. So, that is about 4 months or so ago. What the HELL? Looking at these pictures reminds me of how beautiful his hair once was and how much it is turning to shit now. I am pissed..really pissed. What is going on??? I need answers. Slowly started to look frizzy, then just flat out fried, now balding and extremely damaged. I am scared to wash it or brush it because I don't want him to look like a mangy dog..as he already is. His face is still Beautiful of course, but you get the picture. :( Dr. Miller is looking into things. She has done a very large work up and has come to these conclusions so far... 1. Thyroid is functioning on the low end of normal 2. High Vitamin A levels 3. IGF-1 levels are high, so GH needs to be lowered. Looking all of the above things up on the Internet all has some sort of possibility of hair loss. Go Figure...tells me absolutely nothing. We are waiting to see what the Dermatologist says...

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 ...

   My brother, Grandma, and I went to the Mahaila Jackson Theater in New Orleans to see The Lion King. It was breathtaking...I loved the experience. It was so moving. Huge thanks to my Mom for getting these tickets for us! We had such a great time. The talent of these actors were just amazing. I love spending times like these with the ones I love.