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Jordan is our little AGS wonder!
His twin Harrison and Jordan, were born in May 1999. They were brought on at 36 weeks gestation as Jordan was not growing.
Within days of being born Jordan was jaundiced. A couple of days under the lights did not help. Jordan's jaundice continued (wow that's a tongue twister!) and a liver specialist was brought in to look at him. Within weeks we found it could possibly be Alagille syndrome.
Jordan stayed in hospital for 4 weeks until he gained weight, but after being home just 6 days it was discovered he stopped gaining and was readmitted for 12 days. We were taught how to pump feed him and the doctors wanted to monitor his weight gain. During this stay a heart specialist was brought into the equation and it was determined that his heart condition was fairly minor and would need yearly appointments to the hospital.
At three months of age he had a liver biopsy, which came back inconclusive. It did show he didn't have too much scarring on his liver (which was good). He continued with almost monthly appointments at the hospital to keep an eye on him. At about 12 months of age the appointments moved to 3 monthly. He had another liver biopsy at 18 months and again it was inconclusive. Around 1 year we were asked to participate in a research trial for Alagille syndrome and recently we received the results. It was confirmed that Jordan indeed had Alagille syndrome and that his father carries the gene also.
Jordan's development was very slow. His twin Harrison was crawling whilst Jordan would lay there. When Harrison began to stand, Jordan started to roll over. When Harrison first started to walk, Jordan finally started to drag himself around with his arms. Then at about 14 months of age he finally made it to the 3rd percentile for his age. Admittedly it was the lowest part of the scale, but still, he made it. This seemed to be his cue to start everything. Before long he was crawling properly and then was walking at around 20 months of age. He did take much longer than Harrison, but then he was much smaller. Even today Jordan is about 5 centimeters smaller than Harrison and weighs just 12.2 kg (about 28 pounds).
At around 1 year of age Jordan's jaundice began to disappear and for the next two years he was almost pink. Earlier this year though, his bloods started to fluctuate and in recent months his jaundice has returned and the itch worsened to levels higher than ever before. Thankfully with a change of medication his condition is now being managed again. Jordan's Alagille's, thankfully, is quite mild and it appears that medication will be a big part of his life. Hopefully if nothing more happens he won't need a transplant.
Jordan is a bright, happy little boy who adores music and dance unlike his more robust, physically outgoing brother. He also has a terrific attention span and will sit and watch stuff for hours, but then I believe that comes from laying there all those months without the strength to move.
Who knows what the future brings for Jordan but he knows how deeply loved he is and we wouldn't trade the challenges he presents us for anything!
Our little intro was done a couple of years ago now and since then Jordan has needed another round of nasogastric feeds and has had a Mic-key button inserted to help keep him nourished as 2004 saw him quite undernourished and having broken his leg twice of which hopefully his bones are much stronger now.
2005 saw him have another round of operations to give him an external biliary diversion (in lay men terms - a bag stuck to his body to collect bile from the gale bladder) and today 2007 he is a happy healthy boy who is enjoying grade three, is cheekier than ever before and looking forward to what the future holds!
Feel free to look around!
JORDAN LOVES TO READ THE JOURNAL ENTRIES SO PLEASE LEAVE A MESSAGE SO HE KNOWS YOU HAVE VISITED!
Enjoy!!!
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Journal
Sunday, June 29, 2008 9:29 PM CDT Well how slack am I getting in updating this webpage? Or is it simply that life is getting too busy?
Either way it is no excuse, then again though there really isn't much to update you all on.
School has finished for another term here in Australia. The boys got their mid year report cards and both have shown improvements to last year which is always a blessing.
Jordan has come down with a horrible throat "thing" so he is coughing terribly of a night time and there isn't a lot we can do for it. Harrison sounds like he isn't far off getting it and I am hoping the tickle in my throat stays just as that!
We had a lovely night last week when Noah (also with AGS), Glenn & Michelle stayed over before they headed to the Alagille Symposium in the States. Noah is such a beautiful little man to wake up to. Everytime we see him he is getting more and more mobile and cuter by the minute! We are hoping they have a lovely time and bring us back lots of AGS information. We sent over a few aussie treats for the silent auction they have so hopefully they manage to get a little bit of money towards AGS Research.
Anyway that is about it from us - told you it wasn't going to be anything exciting. So until next time - be good and stay happy!
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