- About me
- Netcoaching (week1&2)
- Netcoaching (week3)
- Netcoaching (week4&5)
- Netcoaching (week 6&7)
- Netcoaching (week8&9)
- Learning to Eat (week10to13)
- Learning to Eat (week14to18)
- Learning to Eat (week19to26)
- Netcoaching Attempt 2
- I can eat
- Life without tube feeds
- Messages
- Miracle Blog
- Special Links
- Photos
- Tips for netcaoching
A little bit about me
Hi. My name is Camden Ash Williams. I was born on the 17 January 2008. I have 2 sisters: Berlynn who is almost 3 years older than me and Jada who is 15 months younger than me. My mom thought it would be a good idea to start a website in case there are any children out there who have similar problems to me. We could share stuff and maybe become friends too. Basically, since birth, I have never eaten through my mouth. (It's a long story and if you want to, you can read the detailed version below.) On the 20th November 2008 we decided to start a tube weaning programme via the internet (called netcoaching) with a hospital in Austria (www.notube.at) to try and get me to eat like a normal kid. This hospital specialises in weaning children off tube feeds. You can track my progress if you go to my Netcoaching pages. I made amazing progress on the programme the first time, but unfortunately I lost too much weight (22% and they only like you to lose 10%) so was in the danger zone and we had to resume tube feeding to get me healthy again. My mom and dad have now decided to take me to the Graz Children's clinic. We are booked in on 19 September 2010. *But, subsequent to booking to go, the brilliant Professor at Graz said that she thinks we should try the netcoaching one more time and maybe it will work and we won't have to go to Graz (but take a holiday instead!).
We were hoping that I would eat some of my cake on my 2nd birthday, but I didn't so we are going try for my 3rd birthday.
We were hoping that I would eat some of my cake on my 2nd birthday, but I didn't so we are going try for my 3rd birthday.
The long story
I was born on the 17 January 2008 at 38 weeks. I weighed 2.55kg. I am not too sure why but when my mom tried to feed me, I just did not want to suck or swallow. It was like the both reflexes wre just not working. I was sent to the neonatal ICU. After many attempts to feed me, alot of refluxing, heaps of tests, tears and many lengthy, heated discussions amongst doctors, I had a gastrostomy feeding tube inserted into my tummy when I was just 1 week old. (For those of you who don't know what that is - well, they make a hole directly into you tummy and put a tube in it for feeding purposes - kind of like a big piercing - and all your milk goes in there instead of through your mouth.)
The week thereafter continued but the reflux did not stop and was pretty much drowning me. So, again after some more tests, more tears and more lengthy, heated discussions amongst more doctors, I had an operation to stop my severe reflux called a nissen fundoplication. (This is a tummy operation where they tie part of the stomach around the oesophagus to create a valve). It's a big op with many cons attached but the big pro for me was that it stabilised me. Yay! Mom and Dad were so happy not to have to listen to the oxygen monitors beeping every 5 minutes. The doctors still had lots of discussions trying to figure out why I was presenting with these symptoms. They mentioned muscular dystrophy, metabollic and mitochondrial disorders. Real scary stuff! Then, after 5 weeks in neonates, they sent me home with a suitcase of medicine, a gastrostomy feeding tube and a very stressed mom. I still was not right. Something was wrong. But the doctors just didn't know what.
It was nice to be home. I was hugged by my sister, Berlynn alot. That was great. She didn't seem to mind that I was sick. She loved me anyway. I met the dogs Jack and Russel and swung on the hammock. Weeks past and I still did not suck or swallow. Infact everytime
I was fed through the tube, I would sweat profusely. It would drip of me. My mom had to prick my finger and take my blood sugars 2 to 3 times a day, which were high rather than low. I also started to gag alot, like I wanted to vomit but could not due to the nissen op.
I also started to present with a very swollen liver. The normal size of a liver for my age at the time was 3cm but mine had swelled to 9cm. The liver enzymes were a bit abnormal too. I was also very chesty constantly. And I had a constant cold. The doctors medicated and medicated me but nothing really helped. My mom continued stimulating my mouth but I still would not drink or suck anything. I started OT and physio weekly. We ran some metabollic screening tests to test for metabollic disorders. They thought that I had a condition called CDG (Congenital Disorder of Glycosylation). And we were told that I probably would not live to see my first birthday. My blood was sent to the Netherlands for testing. We waited 8 weeks for the results which all came back negative. We saw professional after professional who suggested liver biopsies, muscle biopsies, bone marrow biopsies, lung biopsies. My case was even discussed with doctors in the UK and Toronto. My blood was sent to Australia for more metabollic screening tests and they came back normal. So I don't seem to have a metabollic disorder? I was termed a bit of a medical 'mystery'.
When I was about 7 months old my liver started to go down, and my general wellbeing improved. The doctors were dumb founded. At 9 months I gave crawling a bash but felt bumb sliding was a quicker option. I started to reach some of my expected milestones and I smiled more. I saw a brilliant pulmonologist who did some lung tests and discovered bronchiecstasis (a serious lung condition where some of the lung tissue has been so badly damaged that it dies - they think as a cause from my reflux at birth). So long term antibiotics for me, as well as nebulising and chest physio twice a day probably for the next few years.
I now continue to see my pulmonologist for check-ups monthly but am still not eating anything through my mouth. I do intensive speech therapy and vital stimulation (electric current therapy on my face and neck which stimulates the mouth and swallowing muscles) weekly and have begun to take tiny sips of water - sometimes I gag but sometimes I swallow. I started to walk when I was 15 months old. I fell alot but amazed everyone with my sheer determination. The next step is to give me a chance by trying this eating programme with the Austrian clinic in Graz. They apparently have a 92% success record over 21 years. So wish me luck and if you want to see how I am doing, go to my Learning to Eat pages.
PS: I just want to say thank you to some very special doctors and therapists that I see regularly. And to my childminder and night nurse (my guardian angels). You guys are so patient and so kind and you don't give up. Without you I probably would not be okay today and neither my mom. Thank you so much xoxoxoxo