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Greetings from Jordan!

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

Tuesday, June 22, 2010 4:30 AM CDT

Wow a whole 6 months since my last post. The reason? Because (touch wood) we have had probably the best 6 months we have ever had. It has been so nice to have a chance to breathe a little.

I have come to the decision now that we are at this point and now Jordan is 11 that we are going to create a 'NEW' caringbridge site on the updated version. Especially as with the new version you can ask to be updated if there is a new journal entry - which this older version doesn't have. I am however, going to turn this version into a book for Jordan to have as a keepsake.

The 'NEW' version will incorporate parts of this site but will be fresh and I will have a co-author this time around. The man himself will help to write blogs and stuff on the new site. He is getting old enough and can now express things about his condition in the hope that if it helps parents to hear it from a children's point of view then we have reached out enough and helped someone else who is at the start of their journey.

To all of you that have followed our journey to this point - I say a HUGE thankyou.

Please feel free to join us at the new site. NEW SITE: http://www.caringbridge.org/visit/jordanbate

Thank you again and see you on the other side.... oops site lol

Take care - god bless!

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Hospital Information:

Royal Children's Hospital
Herston Road
Herston, Brisbane

Links:

http://www.alagille.org/   Alagille Website
http://liverfamilies.net/   Liver Family Website
http://www.quilts4kids.com/html/kids_of_2008.html   Quilts created for Beautiful Children


 
 

E-mail Author: msleiann@iprimus.com.au

 
 

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