C/O 84 Beresford Road
Lowestoft
Suffolk
NR32 2NG
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Dylan S's Parents/Guardians

Becky and Adrian

Dylan S's Siblings

Pal Seren

Dylan S's Interests

LOVES Thomas the Tank Engine and is collecting 'Thomas Take Along' engines. Also loves the Wiggles, Numberjacks, Charlie & Lola, Maggie and the ferocious beast, Fireman Sam, Teletubies, Postman Pat. Loves children’s films such as The Polar Express, Robots, The Lion King and Finding Nemo. Mickey and Minnie Mouse, watching Mickey Mouse Clubhouse.

Dylan S's Favourite Colour

None

Is Dylan S able to read?

No

Is Dylan S able to use hands?

Yes

Is Dylan S visually/hearing impaired?

No

Does Dylan S suffer from any developmental delay?

Yes

Dylan has a diagnosis of Autistic Spectrum Disorder. Manipulative Skills - 8 months delayed. Visual Skills - 8 months delayed. Hearing & Language Skills - 17 months delayed. Speech & Language Skills - 14 months delayed. Self Care Social Skills - 8 months delayed. Cognitive Skills - 17 months delayed.

Favourite type of post?

Postcards

Story written 2006

Dylan was diagnosed with Cystic Fibrosis at seven days old. His treatment regime was started the next day at the hospital. Dylan has twice daily chest physiotherapy, nebulised antibiotics and DNAse three times a day, inhalers at least twice a day, oral vitamins once a day, a proton pump inhibitor drug once a day to treat his reflux, oral antibiotics three times a day, capsules to digest food with every meal, and he has to have a high fat, high calorie diet. He also often needs courses of steroids for his asthma or intravenous antibiotics for frequent chest infections.

Dylan had so many intravenous antibiotics by the age of 9 1/2 months old that his veins were collapsing whenever they were accessed, so he had to have surgery to fit a portacath in his chest, which sits under the skin above his right breast and delivers drugs straight into his jugular vein. This portacath became infected on the 9th of September this year, and so Dylan had to undergo more surgery to remove the port and fit another one.

Dylan requires a lot of care, and goes through an immense amount of trauma both in his daily life, to endure all his many treatments, and when he is unwell. When unwell, he often needs to stay in hospital (the more recent was a two week hospital stay in September 2006) and he finds this distressing. When on intravenous antibiotics he also requires many blood tests, which terrify him. He also has regular cough swabs which he finds uncomfortable, as he can't cough on demand yet, so the swab has to be taken from the back of his throat.

When he has a chest infection or his asthma gets bad, he can often be up all night coughing and wheezing, coughing until he is sick, making him very miserable. When he is unwell like this he needs a lot of inhalers, and high calorie drinks to boost his calorie/fat intake so he doesn't lose too much weight.

Update 7th May 2008

Dylan's had an up and down month. He enjoyed going to the local fair on 13th April, going on the giant inflatable slide, the bouncy castle, the dodgems and a couple of carousel rides. He didn't want to leave!

He was still having a bad time with his asthma though and he missed nursery on the 14th, because he was up all night coughing and wheezing. He was well enough to go back on the 15th though, after lots of inhalers. 

He had his portacath flushed on the 16th and he was very brave and did a fabulous cough for his cough swab.

He then enjoyed a weekend on his own with daddy from 18th to 20th April, as me and big sister Seren went to Wales for the weekend. He went to the beach and had lots of quality daddy time. 

On 24th April, he had his last video taken for the autism course and it went really well. He, Seren and I, played a turn-taking game for the camera and he coped really well with it all and really enjoyed it. Then that afternoon I took him and big sister Seren to the local soft play place and they had a great time.

He went back there again on the Saturday and really enjoyed himself and then on the Sunday, we took him to the park and to the beach, and he had a great time while Seren was at a birthday party. 

On the 28th his asthma was bad again and he had another bad night, so he missed pre-school on the Monday, but he was well enough to go back on the Tuesday.

Since I last went to Wales on 2nd May, Dylan's been really struggling with his autism. He's been very isolated and 'cut off' a lot of the time and has behaved really poorly, with a lot of repetitive speech and repetitive behaviour and his sleeping pattern has been really disrupted. He's also finding it very difficult to stay calm or settle anywhere and today he has been a bit violent at times. 

I have yet to discover a cause of this downturn in behaviour, as it seems to have affected all areas of his life. I wonder if he's struggling with me going to Wales every other weekend, as is Seren, so I think I'm going to have to stop visiting for a while, which is going to be tough for me, as my Dad is still going through so much.

Thank you to Helen Brierley for the spider card and the Winnie the Pooh card, he named all the characters and for the hug card! Thank you to Rachel and Poppy the snail for the frog card. Thank you to Jenn for the musical card, he blew the trumpet and saxophone and strummed the guitar! Thank you to Kate Dee for the Thomas card, he shouted "Thomas stickers!" Thank you to Fiona for the cow card, he shouted "Cow!" and for the card which came with the parcel. Thank you to Helen T for the card.

Thank you to Clare Bray for the dog binoculars, he absolutely loved them, he kept shouting out what he could see through them! Thank you to Helen T for the parcel, he wouldn't open it for ages! He just kept stroking it and saying 'Dylan's present!" and then when we tried to help him open it, he said "No! Mine!" and held it out of the way! Eventually we got him to open it though and he LOVED the Thomas walkie talkies, drum and whistle! Absolutely loved them. Thank you to Fiona for the fabulous pop up book, he's enjoying it bit by bit.

Update 12th April 2008

Dylan's had quite a good month! We had the CF Specialist from Cambridge appointment at Norwich on 10th March and he was very pleased with Dylan! Dylan had put on another 1/2 a kg, taking him up to 17 kgs, which puts him at the 64th centile on the BMI chart! That is the first time he's been a healthy weight (over the 50th centile) in about TWO YEARS! And it is really reflected in his health too!

His SATS (oxygen levels in his blood) were fine and then he had a go at the lung function machine. It was only his second attempt, as he tried it for the first time at the last clinic, but he did REALLY well! He blew out all the candles on the incentive programme and scored 85%!! The consultant was absolutely amazed; he said that that is probably the best score they've ever had on a child of his age! Apparently he'd done what a small five year old should have done! So that was INCREDIBLE news! To think that after 18 courses of IV antibiotics and all the terrible ill health he's been through all his life, that he could get a fabulous lung function like that! What an absolute miracle! 

The consultant was really happy with Dylan, especially with his fabulous weight gain, and he said that it's clear that treating his asthma so much more aggressively has made a huge improvement in all areas of his health. He even stopped his oral Flucloxacillin (antibiotic) which just leaves him on two antibiotics every day, Azithromycin and nebulised Colomycin/Tobi, bringing his total number of medicines down to 17 instead of 18 a day. Every little helps!

Then I had the EarlyBird course the next day and I found it really informative, the most informative session yet. Our homework for that week was to practise a 'three way attention communication game'. Basically, it was me, him, and an object. So I decided to get two birds with one stone and do a book with him.

I was saying to the tutor that we have always struggled to help him to enjoy books, as the most we can get him to do is to sit down for a maximum of a couple of minutes and point out things he knows the name of in the pictures (e.g. clock, flower, frog, etc), we can't get him to understand that if he sits down and listens, there'll be a story. I know his language development isn't quite at the stage where he could sit and listen to a full story, but I wanted to know how to move him forward anyway.

So the tutor said that we needed to find a book which bridged the gap between pointing out pictures and listening to a story, such as a song or rhyme book. I was stumped for a bit, because he's not too keen on songs or rhymes usually, especially if I sing them, but then I remembered a book I'd seen in Tesco's ('Songs and Rhymes from In the Night Garden') which is one of his favourite programmes. So I got that the same night and used that to plan our 'three way attention' game.

He absolutely loved it! We got into quite a routine about it, and he sat on my lap and we read the book together, with him holding his palm out so that I can tickle it at one point and finishing off sentences when I wait for his responses and then at the end, he has to tell some of the characters to go to bed and then kiss Iggle Piggle goodnight on the last page. He loved it so much that it has become a regular part of our routine, he loves the security and the sameness of knowing exactly what to say and do, and what comes next, and it's a real quality time for me and Dylan together. 

The other part of our homework was to devise a new daily routine for him. I was initially stumped by this too, as so much of his life is already one big routine, because of all the medication and treatment he and Seren require. The tutor suggested getting him to dress himself in the mornings, but I was reluctant to start with that, as the mornings are horribly hectic as it is. Dylan needs at least 2 inhalers, physio, nebulisers, and oral medications, and Seren needs 1 inhaler, physio and oral medications, in addition to all the normal morning routines people with kids have. So I thought I'd try getting him to undress himself after his evening meal and get himself into his pyjamas. We tried it for the first time that night and it's been going really well! I have little prompt cards which tell him to 1) take his top off, 2) take his trousers off, 3) take his socks off, and 4) put his pyjamas on, and he looks at the symbols, repeats the command, and has a really good go at doing it! He usually needs a bit of help getting his arms out of his sleeves and his head out of his tops, but he does the trousers and socks all by himself and only needs the minimum of help in getting his pyjamas on, so I'm really pleased with him.

I'm also using some 'backward chaining' to get him to learn to put his own coat on. I put his arms in the sleeves and straighten it up and put the zip in the bottom of the zipper and then he pulls it all the way up himself and gets lots of praise. Then I'll gradually work back until he's putting his coat on all by himself, but I think it'll take a while, as he can't get the zip in himself! He can take it off all by himself now though and even goes to hang it up!

He really is like a different child since we started this autism course and although that's brought negative as well as positives, it's mostly overwhelmingly positive. The only negative is that now he's happier being around us and spending more time with us, his lack of empathy is meaning that he will often bite Seren REALLY hard for no reason, or scratch her face, or punch her, with no warning or provocation. We're watching out for it though.

Apart from that, he's calmer, happier, more sociable, more affectionate, and his progress is incredible. 

Dylan's chest has been playing him up a bit in the past few weeks though. He started with a cough and a bit of a cold over Easter, so we wasn't well enough to visit my Dad in hospital at any point, as my Dad had just started his chemotherapy, and so wasn't allowed around anyone with a virus. He got over the cold and it left him with a slight cough, which increasing his inhalers didn't really help and so I had a cough swab done about a week and a half ago. It came back clear of bacteria, but we're still waiting for the fungal results. Then last Wednesday, I picked him up from nursery and he had a REALLY bad afternoon with his asthma, the worst he's ever had. I was giving him 5 puffs of Ventolin every 30-60 minutes from 1 pm to 7 pm and it wasn't helping at all, at one point he was so breathless he couldn't speak, so we took him to the children’s ward to be checked over. He coughed all the way there in the car until he was gagging and then in the hospital car park, he coughed himself sick, bringing up some thick sputum and some brown gunk (usually indicating a fungal infection) but he was much better after that. By the time the Dr checked his lungs, he was still wheezing a bit, but nowhere near as badly, and his oxygen levels were a little low for him, but still within normal ranges (just) so she was happy for him to go home. So we're keeping up with the inhalers and waiting for the fungal results, which should be back on Monday. 

Thank you to Julie B, Kate Dee and Jenn for the Easter cards. Thank you to Kate Dee for the sealife card, he said "Seahorse!" Thank you to Jenn for the star card, he beamed at the card when I told him to smile! Thank you to Helen F and Kate Dee for the train postcards, they arrived on the same day and he loved them, especially the teddy on the train. Thank you to Michael & Maria, and Erin F's grandparents and Post Pals for the Easter cards. Thank you to Karen (Sami) for the Teletubbies card, he loved naming the Tubbies! Thank you to Anne Gairn for the postcard and to Helen Brierley for the notecard, Dylan liked the smiley faces, and big sister Seren tried the tongue-twister. Thank you to Chloe G for the postcard, Dylan liked the stickers and the trains on the front! Thank you to Kate Dee for the postcard, he loved the bear on the front, and then asked to watch Rupert Bear, as he looks a bit like the bear on the card! Thank you to Helen Brierley for the card. Thank you to Kate Dee for the card. Thank you to Helen F for the tigger card, Tigger is his favourite character! Thank you to Helen Brierley for the tigger card, he patted tigger and said 'Bouncy Tigger!".

Thank you to Anne Gairn for the Postman Pat and Jess figures, he said "Pat! Jess!" Thank you to K.Winch for the car rubber, pencil and blue snake, he loved the snake especially, and kept saying "Snake!" Thank you to Julie B for the wind up duck, he loved winding it up all by himself and watching it waddle! Thank you to Helen Brierley for the bear stickers for his toilet chart! Thank you to Anne Gairn for the Thomas stickers and sticker album, he loved them! Thank you to Kate Dee for the Sir Handel train and the Bill & Ben and Mighty Mac books, he thought they were great!

Update 5th March 2008

Dylan has had an okay month. We had to miss the dentist, but we'll be going soon. He had CF Clinic on the 1st February and he'd put on 1/2 a kg, which was great, and his SATS were 99%. He had his first go at the lung function machine and did a great first try, which was fab! He had a slight cough, but as his cough swab was clear, they weren't too worried about it.

Then on the 9th February, we went to stay with my parents for the week in South Wales, which both Dylan and big sister Seren loved. While we were there though Dylan's cough got a lot worse and he was quite tight chested with it, so we had to give him tons of inhalers and we took him to a local GP. The GP said that his tonsils were fine, as was his chest, but that he had an awful lot of glands up in his neck. He took another swab, but that was also clear for bacteria and fungus, so we had to presume that it was asthma related. So we increased his inhalers for a while, which eventually cleared it up after we got back to Suffolk again. 

Then on the 18th Dylan had his ENT appointment at Norwich. He was really well behaved all day, which was fabulous, and the Dr was lovely with him. He said that he doesn't have a polyp, that it's a growth of normal nasal tissue, so doesn't need removing. He was concerned about how much tonsillitis he had last year and said that if he's still having a lot of tonsillitis by next June, that he'd definitely take his tonsils out. But fingers crossed, we've reached March now and he's not had tonsillitis yet in 2008, so I'm really hoping that he's outgrown it.

And then on the 25th, Dylan started toilet training! He had started taking an interest in the other children using the toilet at nursery and so we got him some pull ups so that he could have a go and he's now in pull ups full time and using the toilet between 2 and 6 times a day! I think it's going to be a long road, getting him trained, because of his developmental delays (hence starting it so late, because he's mentally a year behind himself) but he's got a sticker chart and every time he does use the toilet he gets lots of praise. He's still having wet pull ups, and it's going to take time, but he's taken a huge step in the right direction. 

Next week, Dylan and Seren have their appointment with the CF Specialist from Cambridge at Norwich, so that will be interesting. Apart from that, I'm continuing with the EarlyBird autism course and we're hoping to go and visit my family in Wales again at Easter, as my Dad has just been diagnosed with spinal cord lymphoma. This means I'm dashing back and forth to Wales all the time, which has been very unsettling for Dylan, and has caused some more autistic behaviour than normal as he tries to cope with the changes.

Thank you to Post Pals for the Easter card, which he hasn't opened yet. Thank you to Jenn for the spiral card, he traced the pattern with his finger and said "Whee!" and for the Valentines card! Thank you to Kate Dee for the alien's card, and to Anne Gairn for the photo card, I pointed out your names and he repeated them to me. Thank you to Colette Morgan for the card. Thank you to Jeanana/Jewana for the card, he shouted "Pooh bear!" Thank you to Okka for the postcard, he said "Bear! Flowers!" Thank you to Colette for the card, he loved naming all the animals, he was really good and spotted all of them! Thank you to Michelle for the card, he said "Heart! Flower!" Thank you to ‘?’ for the Valentines card, and to Helen F and Kate Dee for the trains postcards! Thank you to Anna for the card, he loved the picture of the dolphins. Thank you to Jade for the letter, and to Phil for the letter and the drawing of Thomas, which he really liked! He said "Oooh, look, Thomas!" Thank you to Kate Dee for the Diesel train which he got very excited over, and the lovely Thomas number chart, its fab. Thank you to Anne Gairn for the Nursery Rhymes CD, he plays it in his room. Thank you to Colette Morgan for the 2 finger puppets, he loved them, he calls them "Tiger" and "snap snap" and for the 2 cute little figures. Thank you to Jade for the Charlie and Lola table mat and coaster, he loves them and uses them every day and no, they haven't affected his taste for peas! Thank you to Anna for the drawings of Thomas, Annie & Clarabel for him to colour in.

Update 30th January 2008

Dylan's had a very busy month! His health has been quite good this month, with no extra antibiotics or bad patches of illness. His last IV’s seem to have done a lot of good for him. He has had some problems with his asthma, but nothing too serious.

He went for a 3 night stay at Quidenham Children’s Hospice from 10th – 13th January, which he really enjoyed. He went to see a pantomime, but he wasn't too keen on that, as they turned the lights off after they sat down, which unsettled him, so they took him outside to watch the performance on a monitor. He loved the light up sword they gave him though; he's been almost inseparable from it since! 

Then from 14th – 24th January, Dylan had his Multi-Disciplinary Assessment at the Children’s Centre in Gorleston. He was assessed by the community paediatrician, the speech therapist, the psychologist, the advisory teacher for children with special educational needs, the physiotherapist and the staff at the assessment nursery, and they were all in absolute agreement by the end of the two weeks, Dylan is definitely autistic.

Although we were expecting it, it has still come as quite a blow, and we are still getting our heads around it all. I started the National Autistic Society EarlyBird course today, which should hopefully go a long way towards helping him with the condition. At the moment though, all the new research and learning we have to do about Autism is looking like Mount Everest. I have no idea how I'm going to keep up my high standard of CF care on both Dylan and his sister Seren, whilst doing my absolute best for his Autism, as CF already feels like a full time job and I know from what I've read that you can make a full time job out of Autism too. 

We have a busy time coming up again now, as Dylan has his first trip to the dentists on Thursday (he's always fallen asleep in the past when I've taken him and Seren, so the dentist has let him sleep) and I really want to get his teeth checked this time, as I think he's been grinding the top of his two bottom front teeth and worn the tips away.

Then on Friday he has CF Clinic, then next month we're going to visit my family in South Wales for half term, and then when we come back, Dylan has his ENT appointment at Norwich, which finally came through today. 

Thank you to Kate Dee for the sea life themed card, he said "Fish!" when he opened it! Thank you to Julie Barrett for the card as well and for the fab Lunar Jim finger puppets, we're using them to encourage his pretend play!

Update 4th January 2008

Dylan had a very difficult December. We came back from Disneyland Paris and he was very poorly from then on. He had a fungal chest infection which made him very ill, for which he had an anti-fungal treatment for two weeks. He also started on some new calorie supplement drinks to try and boost his weight, but he hated them.

Then on 8th December, he came out in chickenpox and was very poorly with it, with high temperatures and he hardly ate or drank at first with it. 

Then on the 14th December, his chest was so bad that his consultant put him on 2 weeks of intravenous antibiotics, Ceftazidime and Gentamicin. This meant that he was on IV’s all over Christmas, which was a bit miserable, but he coped very well with it all. His chest gradually improved, and by Christmas Day he was feeling a lot better, so at least he was able to enjoy the day.

He has a very busy month coming up, as he has to see the CF Specialist at Norwich on 14th January, and then from 15th to 24th January he has his Multi-Disciplinary Assessment to give us a diagnosis on whether or not he is autistic. He is also STILL waiting for a referral for his dull eardrums, large nasal polyps which frequently bleed, and his frequent tonsillitis. When we see the specialist in a week and a half, he'll be able to tell us whether Dylan will need a gastrostomy in the near future, which we are very nervous about. 

So next month's update should be a long one, as hopefully a lot will have happened by then and we should be getting somewhere with his care.

Thank you to Despina, Kate W, Edie, Lynne, Maria Carney, Helen T, Post Pals team, Julie Sue and Alan Barrett, Becki, Kate Dee, Laura H, and Jenn for their lovely cards. Thank you to Deborah Bright for the letter, origami and toys. Huge thank you’s to Kate W, Helen T and an anonymous Elf for being Dylan's Elves. Also to Maria Carney, Julie Barrett, Charlie & Chloe G and family for the presents they sent, he loved them all, and to Emma Hoole for the reindeer food!

Update 16th December 2007

Dylan came out with Chickenpox on 8th December and he's been quite poorly with it, hardly drinking and very sleepy. He's also still fighting the Aspergillus fungus in his lungs and he's been on the Itraconazole for 9 days now. Then yesterday (Friday 14th Dec) his consultant decided that because his chest is so awful and he hasn't had any IV antibiotics since May, that his horrible cough might be caused by a bacterial infection which hasn't been picked up. So he has put him on two weeks of IV Ceftazidime and Gentamicin. The Gent is once a day and the Ceftaz is three times a day and he'll be on them all over Christmas, until the 28th December. So we're a bit gutted that everything has gone haywire just before Christmas, but hopefully the IVs will have kicked in by Christmas Day and then he should be feeling a lot better than he is now. He's having such a rough time lately.

Update 8th December 2007

Dylan has had another rough month. They seem to be the only ones he's capable of having lately. On 8th November he was very poorly with a double ear infection and severe tonsillitis again, all of which drove his asthma haywire. He got over that, but was left with quite a cough, so we had another cough swab done.

Last Thursday (29th Nov) we had the phone call to say that his swab had grown Aspergillus, a fungus which plagued him back in August and made him very poorly. So he has just started treatment for that, but his cough is really disgusting. On Monday, he coughed so hard that a load of brown gunk (the fungus) came down his nostrils. 

This Thursday (6th December) he was assessed at nursery by the Advisory Teacher for Children With Special Needs and she said that for her, he ticks all the boxes for an Autistic Spectrum Disorder, but we have to wait for the official 2 week long assessment at the Child Development Centre in the Spring for a formal diagnosis.

She was concerned that he hardly spoke at all at nursery and his social development is clearly much delayed. He is also very into routines and patterns, but struggles to understand abstract concepts, or WHY he has to do things.   

Her main reason for the assessment was to get to know him and to decide when we would have to get the ball rolling for a Statement of Educational Need. She feels that all his needs are being met at the moment with his Individual Education Plan, his Play Plan and his Care Plan, so if we agree, she doesn't feel that we will need to start organising a Statement until January 2009, ready for him starting full time school in September 2009. He will possibly also have to stay back a year and repeat the Reception class, as he will be so far behind his peers.

Then yesterday, Dylan had CF Clinic. The consultant examined his ears first and said that they still looked dull, so clearly there is some fluid in there which isn't draining away, possibly caused by the many polyps the consultant saw up his right nostril. His nose is also still very inflamed, so the Nasonex spray hasn't done anything for him at all and he's having regular nose bleeds now. 

The consultant wants him to stay on the Itraconazole (anti-fungal) for the Aspergillus chest infection for 14 days and he said that it's possible that Aspergillus is going to become a problem for him the future. If it does, he may have to have either oral or nebulised anti-fungal treatments long term, but as he's already on 16 medications a day, (17 including the Itraconazole), two of which are nebulised, it would be tough for him to have another new treatment on top.

We asked why he seems so vulnerable to bugs and fungi and we were told that his lungs have clearly been damaged with all the many many infections he's had in his life and that they just can't shift the bugs anymore. His cilia hairs which line his lungs and should move bacteria out of the lungs clearly aren't able to function. So this was hard to listen to. 

We also spoke to the dietician, who worked out his BMI as being on the 32nd centile, which is way below the CF Trust's target of 50th centile for all CFers. So he has kept him on the Paediasure drinks and given us some samples of new things to try. ProCalShot and Calogen are both liquids, of which you give him 15 mls three times a day. We also have Calogen powder to try, 1 sachet a day and Enlive Plus drinks, 1 carton per day. At the moment, we've tried the ProCalShot, and he is taking that fine.

The Fantasy Charity Fund and the Family Fund paid for us to go to Disneyland Paris last week for 3 days and it was a really amazing experience. I don't think Dylan got as much out of it all as Seren and we did though, he was very... detached I guess most of the time, just staring at everything. He was incredibly tired and very unsettled there, not sleeping properly, and hardly eating or drinking at all. He enjoyed meeting all the characters though and giving them a cuddle and he seemed to enjoy some of the rides, so I'm glad we went and it was fabulous for us to spend the time together as a family. 

We are now looking forward to Christmas and Dylan has learnt the words 'Crimmas Tree', 'Crimmas' (for Father Christmas) and 'Snowman', although he still has no idea of the concept of Father Christmas coming and leaving him presents. He'll still love opening them all though, although last year we did have to spread the present opening over a few days, as he didn't want to open many at a time.

We're really looking forward to having some family time together though, as normally life is far too hectic with lots of appointments and work and school and nursery, so it will be lovely to have time off all together and focus on us as a family. 

Thank you very much to Julie Barrett, Rachel Laws, Despina, Kate W, Edie, Lynne, Maria Carney and Helen Turner for their lovely cards. Thank you very much to Julie Barrett for the DVDs for Dylan and the Fifi purse for Seren. Thank you also to Rachel Laws for the crayons and colouring book for Dylan, he really loved it! And thank you very much to Dylan's Elf Kate W, and to Maria Carney and to Helen Turner for Dylan's fabulous Christmas presents! They are all sat under the tree ready for Christmas morning! He's going to love opening them!

Update 31st October 2007

Dylan has had another rollercoaster month. He was quite well at the beginning of October, and then we had a FABULOUS surprise on 6th October when we were offered a trip to Disneyland Paris! It's being organised by the Fantasy Charity Fund and they are paying for most things involved in the holiday (and we are applying to the CF Holiday Fund for help with the rest, as we've had to pay £264 for passports, £97.50 for train fares to London, and spending money while we're there, and we're on a low income so can't afford it, especially so close to Christmas, and we want to make it as special as possible for the children) so that was a huge surprise! Dylan was chosen by his hospice to receive the gift, and we are SO grateful, and we just can't wait to go at the end of November.

And then in mid-October, my husband and I went to London for the weekend for a CF Trust Parents Conference, which was a lovely break and the conference itself was very informative. Seren stayed with the in-laws for the weekend, and my parents had Dylan, as they're just too much work to ask one person to take on. 

Dylan had caught a cold and tonsillitis again just before we left and by the time we got back he was still poorly and it had gone onto his chest as well, so we took him to the hospital on the Sunday (14th) and the registrar put him on 5 puffs of Ventolin every 3 hours (in addition to his Seretide, Atrovent and Montelukast), a 3 day course of steroids, and a 2 week course of strong oral antibiotics (in addition to the 3 he already has every day).

It took quite a while for him to improve, well over a week, and he struggled with a very nasty chest, but eventually the antibiotics did their job and his chest improved. 

We have had more information about a gastrostomy from the dietician, which was very helpful, but his local CF teams have said that they don't want to make the decision whether to put a gastrostomy in or not, they want to wait until Dylan is seen again by the specialist from Cambridge in January.

The dietician told us that Dylan's energy consumption was down to 50% of what it should be and that some of his nutrient intakes were right down as well and that he couldn't go on like that, as his body wouldn't have any resources to repair itself or fight infection. 

He's since been drinking Paediasure drinks very well, at least 2 cartons a day, so at least his nutrition has improved even if his eating hasn't, but he so far hasn't put any weight on since July. 

He had his feeding study done last week and that showed that he definitely has feeding problems, such as he is a very picky eater and very choosy about what he will eat off his plate (for example, he'll only eat certain chips out of a pile on his plate, and he has to push them about until he finds one he's happy with), and he gets full far too quickly and once he's decided he's finished, he can't be convinced to eat any more. 

He finally had his flu jab two weeks late, after being unable to have it initially due to his tonsillitis, but I'm glad that's out of the way now.

He also had his developmental delays re-assessment, which didn't give us many answers, as the community paediatrician wants to wait until he has his formal intensive assessment at the children's centre before she does much else, which might take until March or April next year. 

So, at the moment, we're just trying to get some weight on him if we can and waiting for things to progress as far as all the other aspects of Dylan are concerned.

His speech is coming on nicely, he's now joining 3 words together confidently, but he's still very challenging and unpredictable and usually a total mystery to us. 

Our next thing to think about is trying to prepare him for Disney, as the psychologist said that we could try making a picture book with pictures from Disney for him to look at, or of the Eurostar, or the hotel room etc., so that he can absorb some of the sights which might make it a bit less of a culture shock for him when he gets there.

Thank you to Kate Dee for the gorgeous Halloween card, both children loved it, especially Dylan has he is MAD on pumpkins at the moment!  It's his new word!

Update 1st October 2007

Dylan had a lovely birthday on 2nd September! He opened some of his presents in the morning, and then we went to a Lions Club function for lunch (through the Wymondham Lions Club) and the children loved seeing the children’s entertainer there. Then the Lions Club took us (and about 596 other people!!) to see the Hippodrome Circus in Great Yarmouth, which was FABULOUS. Both Seren and Dylan were absolutely fascinated by the performances. Then we took them to Brewsters for a birthday meal, which they enjoyed.

He has had a tough month with his health again, he just hasn't stopped coughing. He's on all the appropriate asthma treatments but they just can't shift his cough. 

He was seen at the ENT clinic and the doctor put him on Nasonex nasal spray for life, but said that there wasn't anything he could do for his nasal polyps, and that he didn't want to take his tonsils out while he is so underweight, because of the extra risks of blood loss.

So that was disappointing, but his CF consultant isn't happy with that assessment, and so he is going to query the consultant's decision. 

Dylan has had a terrible month with his appetite; he's hardly eaten a thing most days, and is losing weight again. He had lost weight at his Annual Review a couple of weeks ago, and so his consultant is almost certain he'll need a gastrostomy in the next few months, as he can't afford to lose any more weight.

He had his Multi-Disciplinary Planning Meeting last Thursday, and the outcomes were that: 

1) He is being referred for a more formal assessment for a possible diagnosis of Autism.

2) His ENT assessment is being queried.

3) He is to have a gastrostomy plan considered.

4) He is to have a food study done at the end of October to see if there are any psychological/behavioural reasons for his lack of appetite.

5) He is to be considered for a Statement of Educational Needs in December, ready for him moving up to pre-school in January.

He also had his booster dose of his pneumococcal vaccine on Friday, and he was very brave. He has his Flu jab coming up on the 10th October (as does Seren) and an appointment with his dietician, and his Developmental Delays re-assessment on 25th October, then his food study on the 26th. 

Thank you to Helen T for the lovely card and stickers, the lovely lady who sent the card and Teletubby, and the birthday present of luminous stars and a snake (which he loved) which he received last month but opened on his birthday.

Update 31st August 2007

Dylan has had a very rough month. He stuck a piece of plastic up his nose on Sunday 5th August and we couldn't get it out, so we took him to the local A&E. They had to have a male nurse lie on top of him to hold him down while one Doctor held his head and another Doctor tried to get the plastic out, while Dylan screamed and writhed like an animal. It was terrible to watch and ended up being futile, as they couldn't get the plastic out anyway.

As it was Sunday, the local hospital ENT clinic was shut, so we had to drive for over an hour to Norwich Hospital, where Dylan's daddy and two nurses had to hold him down while a Doctor tried to get the plastic out of his nose. Dylan was hysterical. They tried hooking the plastic out, tweezing the plastic out and suctioning the plastic out and they made his nose bleed really badly, but they still couldn't get it out. So we had to go all the way back home. 

That Tuesday, the 7th August, he had to have a general anaesthetic at the local hospital to remove the plastic. He found the experience incredibly traumatic, as because of his developmental delays, he couldn't understand why he was on the surgical side of the children’s ward, or why he had to wear the gown (he was only 24 months when he had the last op) and he HATED the name bands.

He REALLY fought against the anaesthetic gas, but they eventually got him under. He was only under for a few minutes before they removed the plastic and took him into recovery, but it took 40 minutes before they could rouse him at all. He was fine afterwards and went home that evening and didn't need any painkillers or anything. 

Then during the week, his cough gradually worsened and so on the Friday I took him to the GP, as his Seretide and Atrovent inhalers just weren't keeping his coughing and wheezing under control any more. I wasn't sure if it was the effects of the anaesthetic, the Haemophilus Influenzae bug making a comeback, or his asthma getting worse to the point of needing steroids. The GP said that we should keep him on the Atrovent for another week, and if he was still wheezy in a week, or if he got worse, then she'd put him on steroids.

By Sunday he was coughing himself sick and then his temperature shot up to 38.7 c, so I took him to the ward. They told me that his cough swab taken on 1st August had grown a fungus called Aspergillus, which was causing his cough and making his asthma much worse. They also found that he had really nasty tonsillitis AGAIN. They didn't want to give him anything for the fungus until the blood results came back though, and so they sent us home. That night his temperature went up to 39.9 C, and he was really unwell. 

The next few days were an absolute nightmare.

His nurse rang up on the Monday morning to see how he was and I told her about the Aspergillus and tonsillitis and she said that he should be put on anti-fungals and steroids immediately for the fungus, and antibiotics for the tonsillitis. So, his Doctor prescribed him a 10 day course of Itraconazole (anti-fungals), and an initial 10 day course of Prednisolone (steroids), and a 10 day course of Penicillin. The Itraconazole made his stomach very upset and the tonsillitis hit him hard. He didn't eat for two days and hardly drank either. 

The steroids helped a lot, but as soon as we reduced the dose to half strength after 5 days, he got worse again and so they had to extend his course to two weeks, but in the last few days he has improved a lot and now he's hardly coughing at all.

He's had a few nose bleeds, which I think are due to his nasal polyps, and on Tuesday night he was up all night, unable to breathe through his nose. I have made repeated phone calls to chase up his appointment, but so far we haven't received an appointment yet. It took his consultant over a month to bother to make the referral, and then it got lost in the internal mail for 2 weeks. 

It's his 3rd birthday on Sunday and we've got a really nice day planned for him. He'll open his presents in the morning and then we're taking him and Seren to the circus in the afternoon and then we're going out for a family meal. His main present from us is a Thomas the Tank Engine play table with buildings and track on it, which daddy has made him. It's absolutely gorgeous. Seren has bought him a Thomas the Tank Engine scooter.

Thank you for the present Dylan has received. We're saving it for him to open on his birthday on Sunday, so I don't know who it's from or what it is yet!

Update 3rd August 2007

We went to see the specialist at Norwich on the 9th of July, and it was a huge eye-opener. The specialist found that Dylan's nose was really badly inflamed and congested, probably because of nasal polyps, which are common in people with CF. He said that this is probably why his ears are full of fluid, because his mucus can't drain down his nose, so it runs into his ears. He was also concerned with all Dylan's recent bouts of tonsillitis, so he has asked for Dylan to be referred to the local ENT clinic, possibly to have surgery to remove the polyps, grommets to drain his ears, and his tonsils out, but we'll have to wait and see what the ENT consultant says.

He also said that he didn't feel that Dylan's asthma was being treated aggressively enough, so he has drawn up an asthma action plan for what to treat his various symptoms with. He has increased the strength of his steroid inhaler, and told us to be much more generous with his Atrovent inhaler, which is working wonders, and that if he needs oral or IV antibiotics, or if the Atrovent and Ventolin aren't doing the trick, then to get him oral steroids straight away. He also wants him to stay on his antihistamines all year round and to have Montekulast tablets long term as well, which should help the wheezing and coughing. 

He has also asked for Dylan to have bloods taken to test his immune system functioning and to find out exactly what he is allergic to, what is triggering his asthma.

He also said that if Dylan's weight centiles don't catch up to his height centiles over the next six months or so, then he'll be seriously considering a gastrostomy tube, which is a scary prospect, as I don't think he would cope very well with it. I was over the moon to find that he'd put on over a kilogram when he was weighed at that clinic, which took him back up into a healthy weight range. 

It was Seren's 5th birthday two days later, and she and Dylan enjoyed going to the soft play place with 7 of her friends for her party. Then two days after that, we went away for two weeks to Wales. For the first week, we stayed in a holiday flat in Laugharne, West Wales. Dylan really struggled to adjust to staying at the flat, but he loved playing on the beach all day and going to Oakwood Theme Park, and he loved spending so much time all together as a family. For the second week, we stayed at my mum's house in South Wales, where he was much more settled, but he still managed to get into lots of mischief!

We had a phone call on the day we were leaving for our holiday to say that Dylan's cough swab had grown a bug called Haemophilus Influenzae, so he had two weeks of oral antibiotics for that, and he's just had another cough swab done on Wednesday to see if he's managed to shift that bug. I have to ring the Children’s Ward tomorrow to get the results. 

He had Cystic Fibrosis Clinic at the local hospital today, and he was weighed again and he's managed to put on another 1/2 a kg, which is fabulous. He's also had his Creon tablets increased from 3 per snack and 4 per meal to 3 1/2 per snack and 5 per meal, which will take some getting used to, as he's been on the same dose for so long now. It will also mean that he's on a higher dose of Creon than Seren, even though she's 2 years older than him.

His oxygen levels were really good today, which was a relief. He has had a bit of a cough over the past few weeks, and I think it's asthma-related, as the Atrovent totally clears it, until it wears off again by the time of the next dose. 

He is now being referred to the ENT clinic, and hopefully we won't have to wait too long, as his nose is really bothering him. He is constantly sticking his fingers up his nose to try and clear it, and sometimes cries and says 'nose' in a really pitiful voice.

He also got his prescription today for his Montekulast tablets, which should help I hope. I can get him those tomorrow. 

His Melatonin sleeping tablets are a bit hit and miss though, totally inconsistent. He can have a really good night's sleep some nights, but all this week he's still been awake at midnight, one night he was up until 2 am! It seems he's able to fight the medication sometimes. I could tell the difference in him today though; he was so much grumpier and far less tolerant, all because he's not been sleeping so well. My fingers are tightly crossed that as he settles back into being home again, his sleep patterns will improve.

His speech has improved a bit since we've been away on holiday, as has his interaction with us as a family, both his psychologist and his consultant were happy with the improvement they could see in him today at clinic, and the respiratory registrar said that today is the first time she's EVER seen him looking well! I think that's partly because even though I slathered him regularly in Factor 50+ sun cream, he still managed to pick up a slight tan! 

So now we're just waiting on the results of his latest cough swab to see if he's kicked this bug, to see how the new medications work out, and to see what the ENT consultant says.

Thank you to Kate Dee for the fab postcard of a Thomas the Tank Engine character, he got it this morning and he honestly LOVED it, didn't put it down for about twenty minutes! Also for the London postcard.

Update 7th July 2007

Dylan has had an okay month, no bugs growing on cough swabs, but he has struggled with his asthma and hayfever this month and has been coughing and wheezing lots and having to use his inhalers. His sleeping has got even worse; he has been staying awake until 2.30 am and then having to be up for nursery at 7.30 am. It has been taking its toll, so his developmental paediatrician has prescribed him some sleeping tablets called Melatonin. He started them on Wednesday and they are AMAZING. He is now on his 4th night of excellent sleep, and the difference in him is amazing.

We went to Yarmouth Pleasure Beach today with some friends and big sister Seren, and Dylan had a fabulous time going on the rides. His favourite is the cars ride, he squeals in delight! 

His speech therapist and psychologist are currently battling it out as to whether he has a type of autism called Pervasive Developmental Disorder or Global Developmental Delay, and there's no solution in sight! Hopefully things will be agreed upon at his multi-disciplinary planning meeting at the end of September.

His speech is still very poor for his age, but he's making slow progress. He was trying to say 'Strawberry Shortcake' yesterday. We watch tv in the evenings while the children are having their treatments and he HATES 'The Night Garden' on CBeebies because he hates 'sad' or 'beautiful' songs, and the theme tune is too 'sad' for him so he gets REALLY upset. Anyway, we switch over to Strawberry Shortcake, which he doesn't mind and Seren loves, and he was trying to say Strawberry Shortcake, except it came out as 'Sporty Pancake'! He's trying to name tv programmes at the moment, he calls 'Lazytown' 'town', and 'Come Outside' is 'pin' (because of Pippin the dog!), Tweenies is 'tees', and Big Cook Little Cook is 'cook'.  Numberjacks is 'jass', Teletubbies is 'tubbies', Thomas the Tank Engine is 'twaynes' and Postman Pat is 'pat'. He's also started saying 'bye' a lot more, and he now says it to things like the tv programmes, or to his speech therapy office when we walk past it but don't go in. 

He had a lovely two nights respite at Quidenham Hospice recently, and really enjoyed himself. It was his first time using the safe bed there, a