Happy Days are here to Stay!

Hi everyone! I am having the best Summer ever! I am doing so well, I have been going to the pool and spending a lot of time outside. Mommy and Daddy even have let me go down the slide at the park all by myself! I haven't had to spend the night in the hospital in over 6 months, which makes everyone happy! Mommy took me to the Rehab doctor 2 weeks ago and they injected Botox into my thumbs and my pectoral muscles and there is a difference already! It has totally relaxed those muscles so now I am reaching for toys and people! I am so close to crawling too!  We are planning on spending the rest of our summer right here in Denver and just enjoying every day to the fullest!

Thank you for reading my blog!

It IS about Time!

Mommy has been really lazy and not updating my blog for me!! I have been doing so good, actually, better then good, so we all have been just trying to live our lives and enjoy every moment away from the hospital! We are going on 6 months of being hospital stay free, which is a record of my lifetime! I am now rolling over, from front to back AND back to front... So mommy thinks I am a handful! Mommy won't let the doctors run unnecessary tests on me which has led to a lot of DRAMA at the hospital, but I know mommy and daddy are my number one advocates and obviously want the best for me!! Sometimes doctors don't understand the term "Quality of Life". They focus on testing, testing, testing.... So I am doing great, I am back on my regular G-tube feeds and I LOVE to suck on grape popsicles and Fun Dip! (Probably not approved by the medical team, but mommy approved)!  I am getting Botox treatments injected into my pectoral muscles and my thumbs to loosen them up and hopefully it will help my posture. I am also going to start wearing a back brace to straigten out my spine... None of this hurts me, it is just cosmetic help. Mommy wishes the doctors would give her my Botox, but its not happening! LOL!  I will keep everyone posted on my progress, but so far year 2011 has been a great year for me and I am planning on keeping that way! xoxo Thank you for reading my blog!

Hello from The Children's Hospital PICU...

We have had a rough ride over the last couple of months.... Kingsley was hospitalized at the beginning of November due to what is call Ostomylitis, which is a bone infection that had got into his blood stream. But luckily we caught it in time and we were able to go home the DAY before Thanksgiving! But we were only home for just over a week and here we are back in the hospital AGAIN! He was admitted back at the beginning of December so we are going on just over a week in the Pediatric Intensive Care Unit.... He was put on life support last Monday, but as of 730pm today, we are planning on taking the tube out at around 8pm tonight!! Lets hope all goes well! Please say a little prayer for our special boy! Santa Claus and Mrs.Claus came by for a visit!