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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), 2008 saw his appendix removed and today he is a happy healthy boy who is enjoying school, 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
Monday, June 8, 2009 9:28 PM CDT Well how slack was I last month? Still think we were shell shocked with everything but we are now back to being ourselves and living life to the fullest. I think both Jordan and I need to have a good cry to release the anxiousness we both have but we have been too scared to see the other cry I think lol....
Last week we had a scare - Jordan's bag was full of blood but thankfully it was just the stoma from where he scratched it rather than anything sinister - still it was our first "That phone call" so freaked us both out a little. Again sometime soon we will eventually crack, have a cry and all will be great again.
Thank you to everyone for your wonderful notes, love and support - it means the world to us. I am compiling this journal into a bound book which you can do through this website and it is part of Jordan's 10th Birthday present so he is helping me do it. It is great because all your comments will be included in the book.
Speaking of birthday our beautiful boys turned 10 a few weeks ago. I will find some time in the next few days to upload some pictures - they aren't great but they are piccies. The boys celebrated with a ten pin bowling party and had a ball. They each had four friends with them in their lane and they each had their own birthday cake (piccies to come). It was a lovely night as they went to the disco bowling where they turn the lights out and put the fluro glow in the dark lights on.
This weekend just gone we went to a lovely caravan park with friends and went camping. Albeit a little cold (being winter of course) it was a lovely weekend. They have a children's club which the boys loved, waterslides in their heated pool and you are a five minute walk from the beach - couldn't ask for more.
So for now that is about it.
Till next time - lotsa love.........
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