Our So-Called Life.

PWSA (USA) CONFERENCE 2011 A contract has been signed with the hotel for our upcoming conference to be held November 11-13, 2011, in Orlando, Florida! The Buena Vista Palace Hotel is located on Walt Disney World property across the street from the Downtown Disney Marketplace.   How cool is that?!?! I better start saving now...I would love to be able to go!!!  

OK, so we received the GH in the mail a couple days ago. Now, I am just waiting to be contacted by a nurse in our area who is trained on how to give them. She will come out to the house and go over everything with me. I was suppose to be contacted within 24-48 hours after receiving the Genotropin. It has been about 46 hours...She better call soon :) It seems real easy to do, and it doesn't intimidate me a bit. They are all ready to go, you just twist to mix the powder with the solution and that is it. So, this will be a nightly injection for the rest of Cade's life. They may be stopped for different reasons, but for best results he should remain on them forever. Cade had a private therapy session yesterday, and it went real well. She hadn't seen him in about a month and thinks he is doing great! He was smiling and cooing for her. She noticed much more range of motion in his neck. In about two weeks we will finally start his Therapy with Early Steps. It took a while to get t...

 

Here is another article about Madison, Clint Hurdle's daughter with PWS...Watch the video and read the article on her...She is the poster child for PWS! 9NEWS.com Denver Colorado's Online News Leader Catching up with Madison Hurdle

The APX Alarm Gives Back contest totals are looking awesome for PWS!!! I am so excited to see the totals growing and to know that so much money will be donated to PWS Research! For those of you who don't know about this, it is a contest going on and there is a winner for each category/region. You can follow this link to see the totals as of today.... http://blog.apxalarm.com/2010/apx-alarm-apx-vote-totals-72310/ Add them as your friend on Facebook, and you can vote daily to help win lots of money for PWS. You can vote one time for each region. Thanks in advance for all of your votes!!!

Cade had his 2 month check up today. He is really 10 weeks tom. so we are a little behind, but hey what aren't we behind on...Good News is he weighs 8 lbs. :) That is a big jump. Last Tuesday he weighed 7lbs 7oz. His formula recipe is still concentrated and has been increased to 2.5 oz. Must be working!! I decided to space his immunizations out, so he only got one today. With PWS there bodies sometimes metabolize medicines differently. Not all the time, but just to be safe I decided to only do one today. We will go back once a week until he gets them all. Anyways, this weekend is the repeat airing of Extreme Makeover: Home Edition that features the Starkweather family. They have three boys, the youngest of whom has PWS. It is a great episode that raises awareness for PWS! Everyone should tune in this Sunday. :)

Finally got a picture of that little grin... Isn't that just the cutest thing EVER?!?! I love my Boys!!!!

I know everyone is just dying to know how our visit went, and I am just dying to tell you! It was the best experience ever, more than I could have ever imagined. Dr. Miller took us up to her clinic area and we sat in a room with her and Christy, the Dietitian. Our appointment was for 9:30 and we talked with them for over two hours! We left at 11:45. First we told her our story, and then she laid everything out for us. She went through all of the stages of PWS in detail, and we just casually discussed questions and concerns. There is nothing that she does not know about PWS, it is truly her passion. She is a research doctor too, so she is up with all the happenings on the research. Dr. Miller even sees patients from other countries!! She said Cade looked great to her, and she was very impressed at how active he was. She is very proactive and positive. She said that Cade will be just fine in society and there is no reason to think he won't. If we follow her and her team's treatm...

Got everything packed (hopefully) and all ready to go! Just me, my Mom, and Cade. I will really miss my Carter, but I know he will have much more fun here. Still don't wanna be so far from him :(  Good thing I will be home Saturday! I am so ready to get there and get back home. We have an appointment at Children's Hospital to see and ENT tomorrow morning, and then we are heading out after. We will see Dr. Miller along with a Registered Dietitian Friday morning around 9:30 am. Then we will be heading home Saturday. I am so lucky to have such great family to help me out through all of this! I truly have a great support group, and I am forever grateful!!! I will be updating soon with what I know will be great news... :) 

Cade is getting a little personality! When I talk to him he kicks his little legs and waves his arms. It is so cute to see him respond! At his 5 o clock feeding this morning he was wide awake so I was talking to him, and he made the sweetest little cooing sound. I couldn't believe it, I thought maybe I was still half asleep. Later on I was telling my Mom about it, so I started talking to him to see if he would do it again and he did! It was the sweetest thing ever...just wanted to share my joy!

I went in to check on Cade and this is what I saw... (Carter likes to give him toys periodically!) How nice of Big Brother to share his Buzz Lightyear...Priceless!

Well, we had another weight check Thursday and Cade weighs 7lbs 1oz. So, he hasn't lost, but he hasn't gained much either. He is 7 weeks old and only 7.1 lbs. Of course that goes along with the PWS though, so it is only expected. Just about 90% of infants with PWS are not able to feed by bottle. They usually are tube fed for at least the first 6 months of life. It was a struggle for him to learn, and sometimes still is. Now, I see why most babies have the tube. They can get the adequate nutrients and gain weight without working so hard and burning calories. Anything that he does burn calories, and eating is a real workout. So, we are concentrating his bottles now to make each feeding 24 calories instead of 20. We will see how that works! By concentrating it the formula is thicker and he has to work harder to suck, which again burns more calories...Never knew feeding a baby could be so complicated until now. I am so ready for him to be able to start Growth Hormones and get stron...