Update 1st April 2008
Jordan hasn’t been too bad this month, although he did suffer a nasty throat infection over Easter and he had infected glands under his arms resulting in really sore arms. He still has a cough and cold which he can’t seem to fight off; we are just about managing to keep it at arms length. He is also suffering from frequent bouts of painful mouth ulcers at the moment.
Jordan is quite down at the moment as the school residential is coming up and it doesn’t look as if he can go because there is no-one who is able to do his treatment. We are trying to figure a way around this so he doesn’t miss out.
We would like to send a big thank you to Jade for sending Jordan a 20 questions funball - we have all had hours of fun with it! It really is amazing and thank you Jade for Chloe’s nail set too. We would also like to thank Sally for her funny vicious veg note pad and pen and also her postcard. Jordan loves receiving postcards so thank you also to Kate D for her postcard to add to the growing collection. A big thank you to Claire, Marie and Michael and Erin’s Nan and Grandad for Easter cards. Also thanks to Maria for sending the magical e-cards Jordan always has a giggle at these. I hope i haven’t forgotten to thank anyone, it really is appreciated. And thank you to the anonymous person who sent the tangle, this is a great little gadget used for stress and other problems and it really does work as i (Jordan’s mum) have tried it myself. Thanks to everyone at Post Pals who keeps this great cause going - the little gifts and notes which are sent really mean a lot to both Jordan and me.
Update 9th March 2008
Jordan saw the specialist from Newcastle who told us that the large swellings he is having are reactions to the subcutaneous infusions. Unfortunately there isn’t a lot to do apart from try a different manufacturer. We have just received our first delivery of the new medication and Jordan had his first infusion which didn’t go very well as he had severe itching and still got the swelling. Jordan isn’t very happy at the moment; he doesn’t want to be different from his friends anymore and so is saying he doesn’t want any treatment or any more medication. Unfortunately, without these, Jordan would become seriously ill and we cannot seem to be able to make him understand or accept that he has got to have these treatments for his own sake. We are having home visits from specialist nurses and play specialists to see if they can help, as we are running out of ideas.
We would like to say a big thank you to Julie Barret who never fails to send something to cheer Jordan up. Also to Jenn for the football card, Denise, Karen, Helen and Kate Dee for their postcards to add to Jordan’s ever growing collection. Also to Sally for the football magazine and the top of the pops magazine for Jordan’s sister Chloe. Thanks to St Mathews Sunday School for their list of pen pals for Jordan to write to, we will do so as soon as we get a little bit more time. Also a big thank you to Maria for the magical ecards, Jordan always manages a giggle at these. I hope i haven’t forgotten to mention anyone, if i have I’m really sorry! Thanks to everyone at post pals - the job you guys do is amazing and really does lift our kids when their spirits are low.
Update 30th January 2008
Jordan hasn’t been very well lately. He has got a glandular fever type infection, which he seems to be taking a while to recover from. He seems to have one good day and then two bad days. We are going to be seen by Professor Cant from Newcastle next month for a full review, which will hopefully help us move forward a bit. Jordan is also having some chest pains due to inflammation of the chest muscles. He is taking regular pain killers for this.
We would like to thank anyone who has sent Jordan post as he really appreciates it.
Update 20th January 2008
Last week we got the results of some of Jordan’s blood tests, unfortunately he has the ebv/glandular fever infection again. This is the second time in 18 months he has had it. He has been off school now for a week and it could be up to 6 weeks before he starts to feel any better, he has good days and bad days. The main symptoms of this are fever, severe headaches, nausea, sickness and extreme lethargy. Jordan must get plenty of rest to start to feel any better, but as soon as he is feeling a bit better he tries to conquer the world. He has been quite breathless recently and we are now waiting for some heart tests to be performed to rule out anything that could be sinister. Throughout all this he never complains and always has a smile.
I would like to thank a young girl called Lauren who has recently started writing to Jordan; he is really impressed by this. We would like to thank everyone who continues to send post to Jordan, it really is appreciated.
Update 3rd January 2008
Jordan has been quite well over the Christmas period, although he has been suffering with reoccurring pain in his knees and legs. He has also suffered with a sickness bug but this isn’t unusual for Jordan. We are due to see the consultant on monday and he should have the results of Jordan’s recent blood tests which should throw some light on his lethargy and nausea.
We would like to thank Despina for her lovely Christmas card from the USA and also Ellyn in the USA. Special thanks to Julie Barret and her family who sent both Jordan and Chloe cards. Thanks also to everyone who sent Jordan gifts, he was really excited about these and we really appreciate it. Thanks to everyone who takes the time to read about Jordan and send him something, it really is appreciated. Jordan now has a large collection of post cards from all over the world which he really treasures; it’s the small things like these that make a big difference.
Update 2nd December 2007
Jordan is now on new medication for his bowels, he has suffered quite badly over the last few weeks with severe tummy ache and constipation. He has also had a sickness bug twice but this isn’t unusual for Jordan as he always suffers like this in the winter.
Jordan would like to thank everyone who has sent post, especially Julie Barret, Barbara (head of P.E. at an army high school in Germany) and also Katie Dee. Jordan received his quilt of love from solak and he was absolutely over the moon - it is beautiful and really appreciated.
Jordan would just like to wish everyone at Post Pals a very merry Christmas and a happy new year. We hope you all stay well.
Update 28th October 2007
Jordan is now on some new medication for his bowels; we still have to see if it will work as he has only been on it a couple of days. The paediatrician seems to think Jordan has a slow moving bowel and this is what is causing the problem. At last we finally seem to be moving forward and getting a bit of help and support with this problem. Jordan has a new pump to administer his infusions now, so this will mean he can have two infusions going at once. I really don’t know how this will be as at the minute he is having gross swellings from one infusion, so the thought of two doesn’t really seem appealing right now, but we are willing to give it a go. Jordan has been quite well the last month with only one infection and that was in his infusion site and i must say he was quite poorly and in a lot of pain, but after a course of antibiotics he was soon back to his normal self. He also suffered with a sickness bug and acute abdominal pain, but seemed to bounce back after that too. As winter and the bad weather is on us this is when we have got to really watch Jordan, with all the winter bugs flying around he will be quite vulnerable.
I would like to thank everyone who has sent Jordan mail. Just a small note from someone he doesn’t know shows that people really do care. A big thank you to Julie Barrett, Jordan was absolutely thrilled with the tiny kite he received - he tried flying it in the garden but there wasn’t enough wind and we have now convinced him it should sit on his shelf so his friends can see it. Thanks to everyone, it really does brighten up his days.
Update 24th September 2007
Jordan is having a really tough time at the moment and he has been referred to a paediatric consultant because he is having major problems with his bowels. It is thought that the Diana nurses will come in to our home to try and ease the pain Jordan is having and to try to get his bowels moving regularly. At the minute he is only going about once a week and is totally reliant on laxatives and painkillers. Jordan still has a smile on his face and doesn’t like to complain.
Jordan would like to thank everyone who sent him birthday cards as it was really appreciated. A big thank you also to the people who are sending Jordan postcards form all over the world, he really enjoys receiving them.
Update 7th August 2007
Jordan was admitted to Pendlbury Children’s Hospital for some dental work in the middle of July; however his level of anxiety and his fear of hospitals caused this to be postponed. He was actually taken into theatre but because he was vomiting so badly the anaesthetist thought it would be too dangerous to put him to sleep. He his now seeing the psychologist regularly to try to help get his anxiety under control so he can be re-listed for the dental treatment he needs. Jordan cannot attend a regular dentist because of his condition. Jordan is suffering with abscess in his mouth at the moment and frequent bouts of ulcers.
Jordan would like to thank everyone who sent him post; he is now getting quite a collection of postcards from all over the world. We are really grateful for these as they brighten up Jordan’s days.
Update 7th July 2007
We have just got back from Spain. We enjoyed a family holiday there, away from all the stress of the hospital, although we still had to take his treatment and do it while we were there. Jordan is due to go in hospital on the 12th of July for some dental work as he has a tooth which has grown through the bottom of his mouth under his tongue. It isn’t even in the gum so this has to be removed along with some other work. Jordan is seeing the psychologist on a regular basis at the moment as he is experiencing a lot of psychological effects linked to his condition. He has had a couple of skin infections both caused by either a scratch or a splinter, but generally he has been quite well. He isn’t very pleased about going in to hospital but the psychologist is trying to help with that.
We would like to thank everyone who has sent post to Jordan, especially Julie Barret. He really likes the postcards he receives and now has a special place where he keeps them all.
Update 9th May 2007
Jordan had his appointment brought forward as he was suffering from lots of itchy hives which were making him really miserable. The immunologist has said it is utucaria and can affect some people with immune problems. He has now been put on some new medication which he has to take daily.
Jordan would like to thank Julie Barret and her Allan for the gift and cards he received. Thanks also to Nicole D for her lovely letter and he has received some great postcards from Australia and Finland. A big thank you to everyone who sent post to Jordan, we really appreciate it and it brightens his day.
Update 7th April 2007
Jordan had a few infections and viruses throughout February and March. It started with him catching gastric flu and this left him feeling rather low and fed up. He was just getting over this when he got a chest infection and had to be on antibiotics for 10 days. He seemed to pick up nicely after this, but was knocked back again by an infection in his stomach from his infusion site. This left him feeling very sore, but if you asked him, Jordan would always say he’s ok as he doesn’t like to complain. He finally got over this last infection and apart from an attack of rather large itchy hives he seems to be ok for now. At the moment Jordan is looking forward to Easter and enjoying the sunshine while it lasts.
