Update 17th June 2010
Sorry for the delay in updating, we have been really busy as my Nana (who is very old) has been really poorly.
Jordan has had another 2 chest infections over the past 2 months (meaning 4 already this year) and a throat infection. He had some blood work done in May, which told us that most of his IG levels were fine but IG2 is very low. This is the specific antibody that fights chest, throat, ear infections and some other more serious infections. Due to this, it has been decided that Jordan will now have a high dose of prophalytic antibiotics 3 times a week, and he will be monitored to see if this can improve his condition.
Jordan is enjoying the football and following the world cup hoping England do well.
We would like to thank everybody who has sent post to both Jordan and Chloe. Especially Helen, Kate Dee, Claire who sends a card every month. We would also like to thank the school teacher Helen who sent Jordan a beautiful book about the universe; he was really pleased with this and is getting a good collection of books about the planets and universe. Also, Chloe received some bath accessories from Lush which smelt lovely. It really is appreciated, thank you.
Update 2nd February 2010
Sorry it has taken us so long to reply, we had a problem with our emails.
Jordan had a lovely Christmas and New Year. We had relatives from Canada to stay so it made it extra special.
Both Jordan and Chloe received an awful lot of mail over Christmas and this we are very grateful for.
Jordan has had another chest infection and is suffering from migraines, but on the whole he is doing quite well.
Chloe has had a few assessments done and it has been noticed she has moderate learning difficulties and quite severe mental health problems. She started a special school in January and she seems to have settled well, but it’s her final year and we feel she has been let down with her education and the way she’s been treated.
We would like to thank everyone who has sent post to both Chloe and Jordan, especially Helen Brierley, the Hamberg family, Martin Jackie and Jamie, Benjamin Taylor, Kate Dee, Sarah G, Debbie, Wendy, Jane, Elf Lynn and the other Christmas elf who didn’t leave their name. Thank you everyone, it is really appreciated.
Here’s hoping to a happy and healthy 2010.
Update 30th November 2009
Jordan has had his treatment reduced to monthly and this is proving quite difficult at the moment. He has had the flu virus which required tami-flu antivirals, and subsequently has had a re-occurring chest and throat infection. After a trip last week to the local children’s A&E department, Jordan is now on yet another course of antibiotics. We are hoping this will knock the infection back, but up to now there are no signs of this irritating cough relenting. Jordan is quite cheerful in himself and is enjoying the time spent in bed on his x-box. We are hoping to get some up to date blood tests very soon, and this will shed some light as to whether or not to increase his medication.
Jordan is looking forward to Christmas and we would like to thank everyone who has sent post to both Jordan and Chloe throughout the year. Especially Maria, Kate Dee, Julia Barret and all the other regulars. Also, a big thank you to everyone who has sent Jordan postcards from all over the world as he now has a lovely collection. A special thanks to Viks and Post Pals, without you none of this would put a smile on a poorly child’s face. Thank you. Wishing everyone a very Merry Christmas and a Happy New Year.
Update 1st October 2009
Jordan received birthday cards from Post Pals and he really appreciated the home made ones. We would like to thank everyone who sent Jordan post for his birthday. We would like to thank everyone who sends post to both Jordan and Chloe, it is really appreciated. Thank you.
Jordan had had his treatment reduced, but unfortunately is now starting to pick up more frequent infections. He has had 3 chest infections in the last month. It is likely he will have his treatment upped again.
He has also been seen by the orthopaedic specialist about the pain and swelling in his knees. He is now restricted again in the activities he is able to do.
Update 10th August 2009
Jordan has been quite well over the last few months with minimal infections, so the immunologist has decided to reduce his infusions even more. Good news for Jordan, but we now have to be extra vigilant. Jordan already has a nasty infection in his elbow after falling on it and it now has a rather large lump on the inside of his arm, so a trip to the GP is needed.
Jordan also has a referral to the orthopedic specialist later this month as he is having major problems with his knees. The advice given for now is plenty of rest and no sports or physical activities which is proving rather difficult with it being the school holidays.
Anyway, a big thank you to everyone who has sent post to both Jordan and Chloe. Jordan has received a lot of post from Salt Lake City and thank you to the lady who sent him the wooden puzzle of a dinosaur (it is now securely glued together and is taking pride of place on our fireplace). Thanks also to Viks for the moonpig card as Jordan is thrilled with this one.
Once again, thank you to everyone who sends post to both children. It is most appreciated, especially when this restless boy wants to be out and about, but cannot exert himself as much as his friends.
Update 4th May 2009
Jordan has been a little unwell over the past weeks. Firstly we had a chicken pox scare which meant a visit to the local children’s A&E department. We were seen by two doctors here and the first said it was unlikely to be the chicken pox, but the second said it was as it presents differently in children with immune deficiency. Jordan was just given an extra dose of immunoglobulins and some antivirals.
We then had to go back again with a different problem as Jordan has been having trouble with pains in his knee (he had developed a swelling under his right knee and we thought it best to go and get it checked). It turns out Jordan has had a grow spurt and the tendon on his thigh which attaches to the shin bone has flicked off, causing it to shear the shin bone. He is now under orders to keep off the knee for approximately 6 weeks to see if it settles down, but if not, they will decide what the next plan is going to be.
I would like to thank everybody for the cards and gifts that both Jordan and Chloe have received over Easter and the last month. Jordan has spent many hours with his wordsearch mug. Thank you to Helen for the handmade cards and chocolate lollies. Jordan also had a gift from Hong Kong - it was two egg shaped ceramic faces with herbs inside. These were really different and now take pride of place on Jordan’s bedside drawers. Also, thank you to everyone on the Post Pals team. Without you guys, none of the children would have anything to look forward to. Something so small with a hand written message means so much to a child who is not very well. Thank you all.
Update 10th March 2009
Jordan hasn’t been too well this month; he’s had a lingering cough and cold which we just can’t seem to get rid of. He also now has a thickening of the bone just under his right knee and this is causing lots of problems and quite a bit of pain. He is also having pain in his left heel.
Jordan is trying to cope and keep up with his friends at school but after his first P.E. lesson on a Monday, he is then unable to join in any physical activities for the rest of the week. We are just hoping this is going to ease up otherwise it will be another doctor added to our long list.
We would like to thank everyone who has sent post to both Jordan and Chloe. Jordan has received some lovely home made cards, one which had Bart Simpson on (one of his favourite characters), thank you Adam. Also thanks to Wendy who sent both Jordan and Chloe personal hand made cards. Jordan received a great football bath bomb which he couldn’t wait to put in his bath and Chloe got a chocolate candle which really did smell like chocolate. Also, a big thanks to everyone at Post Pals as you all do a brilliant job. The small personal cards and messages people send really do make a big difference when a child is feeling low. Thank you.
Update 2nd February 2009
Both Jordan and Chloe have been unwell over Christmas and throughout January with a reoccurring flu virus. Jordan is also having lots of pain in his joints and his heels; he is seeing a paediatrician on Thursday.
We have a lot of people to thank for the post received over Christmas. Both children received boxes from elves and there was also a stack of cards and more gifts. Thank you to Dani for Chloe’s box and also to Maria and Michael for her other box. Jordan’s came from elf Cole and we would like to thank you as well. A big thank you to Julia Barret and also Helen who sent Jordan a great wooden puzzle which he spends a lot of time with, especially when he is having his treatment. Thanks also to Despina, Sam Alan, Noah and Imogen, Sarah, Karen, Dave, David, Vicky, Christopher, Ria, and Bobby the dog. An extra special thank you to Post Pals, without you none of this would be possible.
I would like to say a big thank you to everyone who has sent post all year as it means so much to see a smile on their faces when they receive post. Thank you all.
Update 29th November 2008
Jordan was seen on Monday by the immunologist; he is quite pleased with him at the moment and is not going to change any of his infusions or medications. He will be seen again in April but if he is poorly before that we will be seen sooner.
Jordan is having intermittent pain in his knees and ankles but because there is no swelling at the moment it is best to treat it with brufen as and when he requires it. If we notice any swelling then we have to go straight down to the hospital or contact someone there as children with immunology problems can also suffer with arthritis.
Thank you to everyone who has sent post to both Jordan and Chloe over the past year, especially Jenn, Helen, Dorothy, Julie Barrett, and St Mathews Sunday School. Thanks also to Viks and Post Pals itself.
I hope you all have a great Christmas and a happy and healthy new year.
Update 3rd November 2008
Jordan has been quite well lately. He has settled well into high school and seems to be doing well there.
Although he has been quite well infection wise, he is still having problems with his bowels and has had his medication upped again. He is now taking an extra 3 tablets at night which he isn’t very happy about.
He is due for a review with the paediatrician very soon and also with the immunologist at the end of November.
We would like to thank everyone who continues to send post to both Jordan and Chloe, especially St Mathews Sunday School. Thanks also to Post Pals for the parcel for each of them, Jordan was particularly happy with a signed superbike poster and Chloe was really pleased with her DVD and jewellery. Thanks again to everyone.
Update 23rd September 2008
Jordan spent the last week of the summer holidays camping. He really enjoyed the experience although he did suffer a bit as he had a few days vomiting with a bug and he also had an infection in his arm after a scrape with a spike which required antibiotics. Jordan really enjoyed the kayaking and cooking on an open fire. It was a real old fashioned children’s camp and the experience was great for him.
He has just started at secondary school which seemed rather daunting but he seems to have settled really well and we hope he continues to be happy here.
Finally, thank you to everyone who has sent him cards, letters and gifts, however small. They mean a great deal to Jordan, Thank you everyone who sent him birthday cards, it was really nice. Special thanks to St Mathews Sunday School who all signed a card and he thought that was great. Thanks as always to Jenn, Helen, Dorothy and anyone else who has sent something to Jordan or his sister Chloe as it is really appreciated.
Update 31st July 2008
It has been quite a busy time for us. Jordan has now left his primary school and is preparing to go the high school. We have had many meetings with Senco and a care plan has been put into place so that if Jordan becomes unwell he will receive the best possible care.
Over the last month Jordan has been away with school, he went to Lleder Hall which is in North Wales, somewhere near Snowdonia. Jordan enjoyed the experience but became unwell on the second day and spent some time in bed with a nasty sickness bug. He has also had a couple of skin infections and has an irritating reoccurring cough.
Jordan took part in a cricket tournament with school at the local cricket club and also took part in the end of year leavers show, which was a great achievement for him.
We would like to thank everyone who has sent post to either Jordan or his sister Chloe. Especially to Dorothy, who has sent some lovely cards and notelets and some make up for Chloe which she was really pleased with. Thank you also to Jenn who never fails to send Jordan the lovely home made cards complete with Jokes inside. Thanks to Maria Richmond for her magical e-cards and thank you to anyone else who has sent post as it really is appreciated.
Update 2nd June 2008
Jordan has not been very well over the past few weeks. He has had lymphadenitis which resulted in us having to visit Pendlbury Childrens Hospital. He was given a course of antibiotics and he got over it, but it did take a little longer than normal. At the moment Jordan is suffering from a chest infection. He is also refusing his treatment and this is probably why he is getting lots of infections. The consultant has decided we can have a trial infusing once a week to see if this helps Jordan.
Many thanks to Jenn who has sent post to Jordan regularly and also to Julie Barrett. Thanks to everyone who has sent post to Jordan and to Chloe as it is really appreciated.
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.
