Our So-Called Life.

Here is the link to a blog entry that is worth reading!!! http://onalifelessperfect.blogspot.com/2010/11/my-deadly-appetiteupdate-on-william.html 

I have been wanting to write something to express my concerns...Here it is...I still need to proof read and make a few changes. 11.29.2010 Dear Dr. Thomas, I am writing to address the concerns I have for my son, Cade Richard, who was your patient. I do this in hopes that it will affect your future practice, and more importantly so future patients will be provided with better care. First off, just know that this letter is a result of the horrible service I have received from your staff, and not so much a complaint about you as a physician. Although, I do have to wonder how much you truly are concerned about your patients since I have yet to receive a call back from my most recent concern with Cade. I do understand that since the information has to be relayed to you through your nurses that it is very possible you may not even know about this concern. I will recap briefly from the beginning. I called and left a message for Angie in regards to scheduling Cade for a slee...

This is a good thing...Phase 1b has officially begun. Instead of having to force Cade to eat he shows interest and eats like a "normal" baby should. This really just started yesterday...I was holding him and he saw is bottle sitting on the TV tray...He started throwing a fit for it. He was fussing and throwing himself back. When I picked up the bottle to feed him, he started chuckling. I could not believe it! It was like a switch was flipped...Such a difference! If you don't know, there are phases to PWS. Cade has been in the failure to thrive phase, which is called 1a. I had posted a while back on what the different phases were in detail (I think). I will post more on that later. This is basically the normal baby phase and he will stay here for a while. The next phase is where the obesity can set in, but not the food seeking. Just meaning that they still eat normally, but everything has to be monitored closely because they start metabolizing foods different, which can le...

OK, so I decided to pull Cade's feeding tube out on my own! It was just getting in the way of him learning to eat again. He has also been congested and having a tube in your nose doesn't help that out any. So, trying to suck from the bottle, breathe, and swallow just wasn't working out for him. I had been in contact with the Pulmonologist in Baton Rouge, and they were reviewing the study before making a decision whether or not to pull the tube. Well, that was 3 days ago...I was persistent that I needed them to do whatever they needed to do in reviewing it and get back with me because I would be making a trip to Baton Rouge on the 11th(yesterday) for another appt. I was told that they wouldn't be able to fit me in anyway because of their busy schedule. Not to mention every time I call I can't talk to anyone, have to leave a message, and don't get a call back forever...I usually have to call back. Tired of it...I have GOT to find doctors here that can make accommo...

So, I feel like this is long over due...I finally uploaded Cade's birth pictures today. They were on a different camera and I never really cared to upload them before now. As horrible as that sounds, I just didn't want to re live some of those pictures. Things are very different now though, and I can truly appreciate every single one of these pictures. Honestly, I wouldn't change a thing! Enjoy! Make an on-line slideshow at www.OneTrueMedia.com

This is Amazing... http://www.youtube.com/watch?v=ofgjtGra3I8

Shands Childrens Hospital at UF in Gainesville! Ok, so we are home from our crazy trip to Florida! Our flight schedules were nuts, but we managed. I'm so glad we crammed time for that swallow study because Cade passed! He still aspirated a little bit with thing liquids, but swallowed fine with Nectar thickened liquids. The process with swallow studies is like this- They try different consistencies to see what you can tolerate best. In Baton Rouge when Cade had his study he aspirated on thin, Nectar thickened, and Honey thickened liquids. There is one next step up which is pudding thickened, but obviously he can't drink something with the consistency of pudding out of a bottle. That study was about 5 weeks ago. In Florida he did relatively well with thin, just a little aspiration which says a lot! For now we will use something called Simply Thick to mix in his bottles and it will get his formula to Nectar consistency. He is also old enough to start solids, so we will be work...