Our Pal - Dylan S
- Born: 02/09/2004
- Illness: Cystic Fibrosis
- Status: Moved On
- Home Page:
NB: this is a forwarding address, we do NOT disclose home addresses
- Parents/Guardians - Becky and Adrian
- Interests - Dylan is absolutely MAD on Lego and loves collecting more Lego kits and mini figures. He also likes Spongebob, Batman, Star Wars and Indiana Jones. He loves to make and build things and loves working with play dough or helping to make things in the kitchen. He also likes bats, spiders, rockets/space, Doctor Who (particularly the Cybermen).
- Favourite Colour - Green and orange
- Able to read? - No
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - Yes - Dylan has Autistic Spectrum Disorder. It has caused learning disabilities and has affected his reading and comprehension of language. He is currently about 18 months behind his friends at school with reading, writing and maths. He therefore prefers to receive cards and short notes as he likes to try read them himself.
Siblings - aged 3 to 16 wishing to receive post
- Seren 11/07/2002
Seren is also a Pal and has her own page.
About - Dylan S
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 January 2014
Dylan is now in Year 4 of Primary School and although he finds school difficult, because of his learning disabilities, he tries his absolute hardest, is cheerful and hardworking, and is making steady progress. His teacher is full of praise for him and we are very proud of him. He enjoys PE, swimming and music at school, and loves getting creative. He still loves his Lego more than anything and takes it everywhere with him!
When he’s well, he also enjoys his disability football club, his modern dance class, church club, and Sunday school. He is really loving and kind, and loves to spend time with his family, both here and in Wales.
His autism still throws lots of spanners in the works, but he is getting to know himself and finding some coping mechanism which work well in some instances.
His CF is obviously an ongoing concern and at present he is fighting his first Staph Aureus infection, and recovering from a little bowel blockage on New Years Day. However, Dylan always meets his CF challenges head on, and he rarely lets it get him down. He is amazingly resilient and rarely gets discouraged. He is a true CF Warrior.
Adrian, Dylan and I would like to thank everyone who has sent letters, cards, postcards and/or gifts to Dylan from 2006 to now. We are so very grateful. He has loved receiving all the items you have so kindly taken the time and money to send, and your support has cheered him when he has been going through tough times.
And now, as Dylan is getting older and his health is generally stable, we would like to thank you all once again for your overwhelming support, and wish you all the very best for the future. THANK YOU xx
Update 24th August 2013
Dylan has had a very stable few months, with only a few minor blips. In mid-April, he developed a sore throat which gave him a nasty cough for a few weeks and required a trip to the hospital for a lung function check, but his lung function was stable at 79%, so he was prescribed a three week course of oral Ciprofloxacin. Unfortunately, this gave him some serious photosensitivity and he burned himself badly on a few occasions over the three weeks while at school. It wasn’t overly sunny, and he was only outdoors at playtime, with a hat and factor 50 sun cream on, but he still burned very badly on his face, neck and ears, to the point of blistering, so he had to stay indoors and I had to order him a Factor 50 fabric legionnaire style sun hat to protect him.
In mid-May, he had his port flushed and he also had his annual review chest x-ray and ultrasound, ready for his June annual review appointment. At his appointment, he was 142.2 cms tall, weighed 43.4 kgs, and his lung function was 76%. His x-ray showed no decline from the previous year, so the consultant was really pleased, as the last three or four years’ x-rays have shown definite decline, so that was a big victory. His ultrasound showed thick bile in his gall bladder, but as this hadn’t turned into gall stones, the doctor was happy to wait and see for now, rather than make any medication changes. His doctor increased his Azithromycin dose to 500mg three times a week and said that due to his displaying more and more severe side effects when taking Ciprofloxacin (his last few courses have caused him extreme photosensitivity, rashes and itching, sleep disturbances, irritability, joint pains, etc), he is no longer allowed to take this particular drug, and that in future, if he requires such an antibiotic, he will have Septrin or Augmentin. If he grows Pseudomonas, then he’ll just be put straight onto IV antibiotics, as he has his portacath. In general, he had a very positive annual review!
In early June he had an asthma attack while at disability football club, and at the end of the month he developed a bad cough, which hung around for a few weeks, causing a bad cough, which wasn’t helped by a trip to London in early July, as London air always sets his chest off, and so he required many, many doses of his reliever inhaler while away in London, but once we got back to our sea air, his chest settled down again.
Dylan had his port flushed again on 10th July, and from then to now, in late August, we’ve seen far more autistic symptoms than we have CF symptoms. His CF seems to have settled down for a while, but due to the summer holidays and coping with changes, he has struggled with things like dance performances and extra rehearsals, boat trips, waiting for things, waiting before and after Holiday Bible Club sessions, and changes of plan. Hopefully this will settle down once he gets back to school and can settle into his new class. I’m hoping that as his new teacher taught his older sister Seren, three years ago, he might get to know and understand Dylan and his CF and autism a little easier than some other teachers have.
Dylan had another CF Clinic visit on 2nd August and he was 144.3 cms tall, weighed 43.4 kgs again, and his lung function was back up to 79% which is pretty much his current best. He recently enjoyed a lovely holiday in West Wales, he particularly enjoyed playing on Pendine beach, going on the rides at Oakwood Theme Park and in Folly Farm, watching the Perseids meteor shower (it coincided with a night where his Melatonin tablets didn’t work too well!), and go karting at Heatherton Activity Centre. After his go karting experience, he told me he’s ready for big car lessons!
We’re looking forward to celebrating Dylan’s 9th birthday with him on the 2nd September.
Thank you to Bradleigh, Nadine Marshall, Marty Longo, Jessica, Dee, Eleanor, Karen (Sami), Libby, Angela, Natashja, Summer, Fraser, Iain, Alex & Adam, Julie S, Debbie and Harriet for all the lovely cards you have sent to Dylan, he absolutely loves opening cards! It makes him feel like every day is his birthday! Thank you also to whoever sent him the Lego card! Thank you to Julie, Karen (Sami), Sarah G, Kathryn, Emily, Luca Parmitano, Becky Rideout, Sabrina, Julianne, Bhaavya, Soo Min, and Mrs Hill for the postcards you sent.
Thank you to Louie, Sarah G, Isis, Sofia, Natashja, Year 7 of All Saints Academy, Plymouth, and Northwold Primary, London, for the letters.
Thank you to Nadine Marshall for the joke book; to Isis for the badge and stickers; to Dee for the stickers; to Kathryn for the plane; to Heather C for the postcard puzzle; to Luca Parmitano for the planets picture; to Natashja for the Lego minifigure and SpongeBob poster painting book; to Summer for the Buzz Lightyear lego; to Northwold Primary for the 9 pictures; and to Julie S for the SpaceQuest movie kit!
Update 10th April 2013
Dylan has had an up and down few months. On 17th December, he came down with a sore throat which turned into a bad cough which kept him off school for the last week of term. He was feeling brighter by 22nd December though, and he was able to enjoy Christmas at home and New Year in Wales. He came down with another bad cough in early January however, and a week later it was still quite wet. He was seen at CF Clinic on 14th January, and his lung function was pretty stable with an FVC of 93%, an FEV1 of 79% and an FEF50 of 56%. His chest sounded clear and so his doctors didn’t want to make any changes. His cough gradually cleared up, and in mid-February, we noticed that he was really starting to make some progress with his reading, which was amazing! On the 19th February, he developed yet another cough, which got worse over the course of a few days, and he had to have a day off school because of it on 26th February. He was feeling well enough for school the following day, but on 28th February, during a parents evening chat with his teacher, he mentioned that his cough was still bad. He had CF Clinic again the following day, and his lung function had dropped a little to an FVC of 87%, an FEV1 of 72%, and an FEF50 of 53%. His doctor could hear some mild crackles in his lungs, so he diagnosed a chest infection, and prescribed three weeks of extra antibiotics, Ciprofloxacin. The following day, we went to the park with the childrens’ new carer, but he wasn’t feeling well enough to play most of the time. His chest continued to be very nasty for almost two more weeks, and he reacted badly to the new antibiotics, with lots of side effects such as tiredness, grumpiness, sleepwalking, joint pains and itchy skin. The doctor reduced his dose from 750mg to 500mgs, and he got through the course, and by the end of it, his chest was much improved.
He was feeling much better by Easter, and he really enjoyed spending Easter in Wales, and then traveling to Skegness for Spring Harvest. He did struggle a bit at Spring Harvest with his autism, as it was so different to his normal routine, but he still had a lot of fun, and he is currently feeling well!
Thank you to Louise for the lovely Christmas card! Thank you to Marty Longo for the many cards he has sent to Dylan over the months, he’s getting to know your name very well! Thank you to Karen (Sami), Angel Touch Mail, Angela, Callum D, Julie & Alan S, whoever sent the Valentines card, Thomas’s London Day Schools, Emma & Hazel, Dee, Jai & Rio, Sophia, Andrea Rob & Jaiden, Sarah G, 1st Brantham Brownies, Laura J, Kati, Maria & Michael, Natashja, Mrs Hill and Tek for all the lovely cards you sent!!! Thank you to Lyndsay, Claudia in Germany, Claire Simon and Nathan, Samrana, AJ, Natashja, and Sarah G for the lovely postcards! Thank you to Kate, Bron and Sophie and someone else for the letters they sent. Unfortunately, he finds letters a bit difficult to read and understand, but it was very kind of you to send them. Thank you very much to Tracy, Helen T, Claire Connon, Tek, Jenny Mathiasson, Milton Cross School, Kym and someone else for the lovely Christmas presents you sent for Dylan! He absolutely loved them! Thank you Claudia in Germany, Angel Touch Mail, Claire Simon & Nathan, Julie & Alan S, Thomas’s London Day Schools, Charlotte, Bron, Sophie, Andrea Rob & Jaiden, 1st Brantham Brownies, Gareth B, and Tek for the lovely gifts you have sent to Dylan recently, they have made him feel very special!
Update 1st December 2012
Dylan’s had a pretty rough few months since I last updated. He had his annual CF review in early July, which was a mixed bag. He had grown and gained weight well, and his oxygen levels and cough swab were both fine, but his lung function had dropped all the way down to 70%, which was very close to his lowest ever lung function score. His smaller airways were shown to only be functioning at 51%, which is not good either. His ENT examination noted that he has polyps in his right nostril too, although they don’t seem to bother him too much. His Vitamin K levels were a bit low, so his consultant started him on vitamin K supplements three times a week, to prevent damage to his bones. His iron was also a little low, and his consultant increased his antibiotic doses. Due to his steadily declining lung function, his consultant decided to stop his pre-physio DNAse nebuliser and switch him to hypertonic saline, to see if it improved his lung function. He also prescribed some Desmopressin hormone tablets to help stop him producing so much urine overnight and leaking through his nappies and soaking the bed so frequently, but we are reluctant to use them, as if he takes them and then has a drink, he could become water toxic, which would be very dangerous, so for now, we’re coping with the wet beds for a bit longer.
Dylan started his hypertonic saline on 9th July, and tolerated it very well, even though Seren finds it very salty and won’t breathe it in, Dylan did really well with it! On 17th July, he was well enough to take part in his school sports day, and his team won, which he was very proud of!
On 23rd July, he developed a bad cough and was very tired after his football club, and on 24th July he went downhill quickly with a very high temperature of 38.9 degrees, which rose as high as 39.6 degrees by the evening. We took him to the GP and by that point he couldn’t walk unaided, was very sleepy, hadn’t eaten or drunk anything all day, and the GP was concerned that he might have septicaemia caused by another port infection, so we had to rush him to the hospital.
They admitted him overnight, took blood tests and cultures, and eventually he was found to have severe tonsilitis, but the following day when they tested his lung function, it was down to 68%, which was very worrying. They did discharge him, and he went back on the Friday, by which time his temperature had stabilised, his tonsils had healed, but he had developed a nasty viral rash, which prevented him from going to the hospice for his respite care stay that weekend. Instead, we vegged out at home and watched the Olympics opening ceremony, which he enjoyed.
He improved over the following weekend, and was well enough to attend Holiday Bible Club on 30th July, but he was too tired for his football club. The following weekend, 3rd to 5th August, we travelled to Wales for my friend’s wedding and he really enjoyed attending the evening wedding party for a few hours and dancing.
On 13th August, he had his physiotherapy annual review, and he passed his physical test, which we were relieved about. The physiotherapist suggested using his blue inhaler before his hypertonic saline nebulisers, to try and open his airways before his physio sessions.
The end of August was a very fun time for Dylan, as Donna’s Dream House treated us to an amazing family holiday in Blackpool! If you’d like to see what we got up to, then feel free to click the link and watch our photo slideshow …
Dylan also celebrated his 8th birthday in Blackpool, with a trip to Blackpool Zoo and play barn, followed by dinner at Pizza Hut and a ride on the waltzers on the pier.
Unfortunately, as much as Dylan enjoyed that week, he was quite poorly during the week too, he was constantly exhausted and very chesty. When we got home, he had CF Clinic again on 7th September (after starting Year 3 at school on 5th September) and he had grown and put on weight, and his lung function had increased a little to 78%, but he was still constantly exhausted and still had a horrible cough, so his consultant prescribed three weeks of Ciprofloxacin tablets to try and delay starting him on IVs as soon as he started back to school, as Dylan always struggle to settle in to a new school year, and Year 3 was proving the hardest year to settle in to, as there were just so many changes for him.
By 10th September he was no better, and he missed his football club, and when he tried to attend on 17th September, he had to keep stopping and lying down to rest, because of his exhaustion, and afterwards he was incredibly tired. The following day was the last straw, and he got up exhausted, got ready for school exhausted, and struggled to walk to school. When we arrived at the school, he could barely stand up, so I took him back home, called the nurse, and she said to prepare his port for starting IVs.
We took him to the hospital and the CF Nurse was very concerned to see just how spaced out and lethargic and unresponsive he was, she was concerned that he might have low blood sugar or be developing CF related diabetes as well as having a chest infection, so she ordered extra blood tests. He was seen by the doctors and as his lung function had dropped to 74%, they started him on IV antibiotics that day. The CF Nurse was so concerned that she wanted him admitted for a couple of days of observation, but Dylan didn’t want to stay in, and his initial blood results came back okay, so he was allowed home. The nurse took a blood sample for glucose levels, but the lab didn’t test it, and so the test had to be repeated again the following day when she had to do his TOBI level. Dylan REALLY struggles with finger prick blood tests, and so we had to take his sample from his port, which meant that it came back too high, so his IV dose had to be reduced.
Dylan missed school on the 18th, 19th and 20th September, however he went back to school on 21st September and coped fairly well, so we were able to go to the hospice that evening for our family respite care stay, which was very much needed. We also found out that day that Dylan’s blood sugar results over a three month period were 41 mmol, or 5.9%, which is the very highest limits of normal for blood sugar results. Some online diabetes websites class that result as pre-diabetes, so this is something we are going to have to keep a close eye on as he grows, as 1/3 of CF sufferers develop CF related diabetes.
On 23rd September, after our weekend at the hospice, we had to go to Norfolk and Norwich hospital for Dylan’s TOBI blood test, and again he struggled with a finger prick, so the doctors had to pin him down and use a butterfly needle in his hand to get the sample, which he found very distressing.
The following day, he was too tired to go to school, and later in the day, he came out in another bout of tonsilitis, which hit him hard and caused him to need another full week off school, and he had to go back into hospital for another review because his chest went downhill again and his lung function dropped to 68% again. As he was already on IVs at this point, the doctor suggested we increase his ventolin inhalers to help him cope with the viral infection. On 30th September, Dylan coped with going back to Sunday School at church, and so on 1st October, he went back to school, and did okay. He was seen by the consultant on 3rd October, and although his lung function had only climbed back up to 72%, lower than when he started the IVs, the doctor was happy to stop his IVs. I was still concerned, as he was still constantly exhausted with a persistent poor lung function, and so I requested that he be referred to the specialist in Cambridge for a review in the near future.
On 4th October, he went back to his dance class, and he coped fairly well, although he tired easily. He went back to football on 8th October, and although he needed to take frequent rests during the session, he tried his best. He was feeling a bit brighter by the weekend, which was good, as on 13th October, we headed to Legoland for the day, and he had a GREAT time. The following day, 14th October, he cheered Seren and I on as we ran a 2.5 km fun run, and cheered Adrian on as he ran a 13.1 mile half marathon, all to raise money for the CF Trust in Cardiff. After our runs, we took Dylan and Seren to the Doctor Who Experience in Cardiff Bay, which they loved, although he was clearly exhausted that night, sleeping badly and having lots of nightmares.
We travelled home on 15th October, and the following day, he had his flu jab, which he coped AMAZINGLY well with. However, he was still really struggling to adjust to being in Year 3 at school, and he was getting very stressed about school.
On 22nd October, he was seen again at the Norwich CF Clinic, and his lung function had climbed a little to 80%, but he was still getting tired all the time, he was vegging out on the examining table while the doctor was in the room and everything! The doctor wanted to get his sodium and potassium levels checked at his next port flush, to see if that could be causing his exhaustion, as he sweats very profusely because of his lung disease, and doesn’t seem to control his temperature well or recognise when he is too hot and remove layers to cool down, because of his autism.
The end of October and early November was more fun, with carving pumpkins and watching fireworks, and Dylan was seen again at CF Clinic on 12th November, by the specialist from Cambridge. His lung function was fairly stable at 80%, although the specialist was concerned to hear that it had twice dropped as low as 68% recently. He noted the polyps in his right nostril, and prescribed Nasonex nasal spray for them, but apart from that, there was little else he could do, as Dylan is on pretty much all the treatment he can be.
On 18th November, a Sunday, Dylan admitted that he is becoming really discouraged at school, because he finds everything so difficult, due to his learning disabilities, and he can see that his academic skills are way below that of his peers, and it upsets him. I gave him a big pep talk about how far he had come, how many obstacles he’s had to overcome, how his brain works a little differently due to his autism, and how fantastic he is, but he just got upset. The following morning he didn’t want to go into school because it was all too hard, so I had a talk to his teacher, and he agreed to customise the curriculum a little more for him, and set him for reasonable targets, and he also had a chat to him about making some changes, and Dylan seemed encouraged.
On 20th November, his teacher came out with him at home time and complimented him on some great progress in his reading, and Dylan ABSOLUTELY LOVED being praised by his teacher in front of his Mum! He grew about two inches before my eyes! He is trying super hard with his reading now, and on 23rd November, he was awarded Pupil of the Week for his class! He was so encouraged and so proud, and it’s amazing what a little praise from his teacher can do!
On 26th November, Dylan had to have another cough swab because his cough was becoming a little thicker, but the results came back clear, so we’ll just have to keep an eye on that. He had his port flushed on 28th November and was SUPER brave for that, and the nurse also took a blood sample to test his sodium and potassium levels, which also came back fine, so we have no idea what is causing him to get so tired. I have to say, as his lung function has crept up slightly, we have noticed a slight improvement in his energy levels, so perhaps it is related to that, but he still does tire easily.
Dylan is really looking forward to Christmas, and is counting down the sleeps. He has a better understanding of what to expect now, and thanks to his autism, he still has a lot of innocence and still enjoys talking about Father Christmas and the reindeers. He has chosen a gift to leave out for Father Christmas already this year, a Kinder egg chocolate Father Christmas, so that Father Christmas gets to eat the chocolate AND have a present! He’s such a sweetheart.
Here’s hoping for a happy, healthy, peaceful December for our brave little man.
Thank you to everyone who has been kind enough to send Dylan cards and postcards over the last few months, he loves getting them, particularly the interesting handmade cards (particularly if they have different textures on them) and postcards with interesting pictures on them! Thank you to those who send letters to Dylan, however, he struggles to concentrate long enough for me to read them to him. He does look at the pictures if there are some pictures enclosed though. He loves cards and short notes best with concise wording in simple language so that he can understand them. Thank you to everyone who has sent Dylan some fantastic gifts over the past few months, he has loved them all! In particular, he loved the sword and shield he received just after a visit to Framlingham Castle, and his lovely quilt, which he snuggles under to watch tv, and uses to pad his chest when he has his percussion physio in the evenings. It’s getting plenty of use and he really loves it. He gets tired a lot, so something he can snuggle up with is very much appreciated.
Update 1st July 2012
Dylan had a rough time in March and April, with a nasty Pseudomonas chest infection. He tried oral antibiotics for it in the first instance, but his cough got increasingly worse, and when the CF Consultant at Norwich checked him over, his lung function had dropped to from 89% in December to 77% and so he decided that he needed another course of IV antibiotics (even though he’d only had some in December). He was VERY brave for having his needle fitted into his port and the course of IVs went smoothly.
He had two and a half weeks of IVs and by the end of the course, in early May, his chest sounded clearer but his lung function had dropped even further to a very disappointing 72%. The doctors were a bit stumped as to why his lung function was so poor, but they wanted to give him some time to pick back up after the IVs, and to get his activity levels back up to normal by getting back to PE at school, Disability Football Club and his modern dance class (none of which he could do with his needle in his port) and see if that improved things.
His chest has stayed pretty stable since then, just the odd flare up of coughing. He still gets tired easily and has bad days with his chest, but he soldiers on and is doing well in his dance class and enjoying disability football club. He has his annual review on Friday, when we will get all his blood test results back, along with his recent x-ray results, the results of his abdominal scan, his latest cough swab results, and he’ll also get his lung function re-tested. Fingers crossed for good news!
Academically, Dylan is trying his hardest and making some progress. He had his Annual Review for his Statement of Educational Needs in April, and we were happy to see that he is finally scoring on the reading and spelling tests, and is almost up to the level of a Year 1 pupil in literacy (he’s at the end of Year 2). He’s a little behind in Maths too, but not as much. The speech therapist was quite blunt about his difficulties, but stressed that he has made a lot of progress in the past year. The Educational Psychologist arranged to come back and re-assess Dylan again in June, which happened this past week, but we will have to wait for her written report before we know what she thought of him. She was supposed to be testing him for dyslexia, and re-assessing his cognitive skills, ready for him starting Year 3 in September, so I’m eager to hear her recommendations for the coming year.
Dylan was refused a place at the local special needs school, and so he will be spending Year 3 in mainstream school (they can then reapply if they feel it necessary for Year 4), so lots of transitions and safeguards need to be put in place, so that he will hopefully settle easily into Year 3, with a new teacher, new location within the school, different daily routine, different play areas, less supervision, and much bigger, older, stronger peers in the playgrounds with him, making him very vulnerable. He REALLY struggled to settle in last year and the first term and a half were a nightmare for him, so I really hope that the transition into Year 3 goes more smoothly.
Thank you for the cards and postcards Dylan has received recently! He really enjoys opening cards, it’s like having lots of birthdays! He particularly likes handmade cards, so thank you especially for those! Thank you to those who take the time to write letters to Dylan. Unfortunately, his literacy skills are a little behind, and he struggles with concentration, so we read what we can to him, but he doesn’t always understand what is being talked about. He still enjoys opening the letters though! Thank you very much to everyone who has sent Dylan a gift recently. He loves to open presents and gets very excited! He really enjoyed opening the sword and shield set from Kim recently, as we’d just been to Framlingham Castle for the Jubilee and he was very interested in knights!
Update 13th March 2012
Dylan has had a pretty good few months. His course of IVs in December cleared his chest up nicely and he was well over Christmas. He did have a tummy bug in early February, which made him feel awful, but he bounced back pretty quickly. He was seen by the specialist in early February and they were fairly pleased with him, although they did acknowledge that his lung function has been sitting around 75% for the past year now, without any improvement. He is on all the treatments he should be on, DNase, daily nebulised antibiotics, oral antibiotics, regular physiotherapy, inhalers, etc, and so it would seem that 75% is his new baseline. It’s upsetting when he is only 7 years old, but I think it (and all the bronchiectasis seen on his x rays) is mostly due to how poorly he was as a baby. I think it did some damage, or maybe left some areas vulnerable.
He has been fairly settled at school and he has a new friend who he really enjoys playing with. They seem pretty well matched and get on with each other really well, which makes his school time a lot easier. He is still awaiting the decision from the panel about whether he will be going to the local special school in the Autumn, but just today he was seen at school by the assessor who doesn’t feel the special school is the right place for him, so now we’re pretty stumped, as he’s so very far behind his peers, particularly in literacy, and even though he’s coming towards the end of Year 2, he’s still not got the basic skills he should have had when beginning Year 1. His teacher admits that she struggles to support him adequately with just one TA to help her, and so I really don’t see how he is going to make much progress in his current situation. But we will have to wait and see what the panel says on 22nd March.
At the moment, Dylan has a bit of a cold, which has increased his cough a little, but he’s coping well and is keeping on keeping on. He is a lovely smiley, positive, loving boy who keeps us smiling. He has recently decided that he doesn’t want to leave us to have respite care at the local children’s hospice anymore, and so we are now making arrangements for some home-based respite care instead, which should be better for everyone. We have another CF Clinic coming up on 30th March and then we are going to London for the weekend, before spending Easter in Wales with my family.
Thank you to everyone who has sent Dylan Christmas cards and cards during January, February and March, he loves receiving them. He particularly loves handmade cards or ones with interesting pictures on the front, because he loves receiving post, but struggles with the reading/comprehension of what’s inside. He feels very special when he sees his name on the envelopes though! Thank you to all the lovely people who have sent Dylan presents over the past few months. He had some really lovely gifts at Christmas, as well as treats each month for 2012, and he very much enjoys opening them. Thank you to everyone who has taken time out of their busy lives to make my son feel special!
Update 5th December 2011
Since August Dylan has had some ups and downs. He had his annual review/MOT in September, which brought the depressing news that his bronchial wall thickening in the bases of his lungs has progressed yet again, for the third year in a row. However, very little changes were made to his treatment regime, apart from removing his Vitamin E supplement because his levels were consistently high. His chest was rather nasty at the time, and IV antibiotics were considered, but thankfully a course of oral antibiotics sorted him out for a while.
His chest then settled for a while but he had some ups and downs with his schooling and adjusting to being in Year 2 and being so far behind his peers, and the school have now referred him to the local special school for next year. We are still waiting to hear as to whether he has been allocated a place, but for his sake, we hope that he gets in, as he really does need some specialist teaching to maximise his potential, as he is progressing worryingly slowly at his current school, and his peers are starting to notice and treating him differently. He has also had to start wearing glasses full time recently, as his long-sightedness has worsened, and so he required a stronger prescription and to wear his glasses full time.
In the summer of this year, Dylan made a wish with the Make A Wish Foundation UK to go to Disneyland Paris and meet Mickey Mouse, and at the end of November, his wish came true! Make A Wish, with the Disney Wish Program, sent us on the train to London, put us up in a hotel overnight, then spirited us away to Disneyland Paris on the Eurostar, with us staying on the Admiral’s Floor of the gorgeous Newport Bay Club hotel, mere minutes walk from the Disney parks. We had the pleasure of watching the Buffalo Bills rodeo show, meeting lots of characters, and riding lots of amazing, breath-taking and beautiful rides with Dylan’s special Wish Program pass which enabled him to jump all the queues and have special attention from all the characters. And the icing on the cake was the Character Tea Party, where Dylan was able to meet Mickey and Minnie Mouse, who spent ages with him and gave him a big hug, and Woody from Toy Story, who taught him a little dance and gave him lots and lots of hugs. Dylan felt so amazingly special and had the absolute time of his life!!!
The day after we arrived back home, Dylan had CF Clinic, and unfortunately, he was rather poorly for it. He had become unwell while in Disneyland Paris and when we got back his lung function was down a little, his weight was down a little, and he had an awful, awful cough. His lungs didn’t sound too bad, so the consultant wanted to try him on oral antibiotics first, but after 5 days, there was no improvement, in fact his symptoms were getting worse, and so today he was started on IV antibiotics through his portacath. However, by starting them today, 6th December, he should be finished by 20th December, and should hopefully be feeling much better by Christmas!
Update 25th August 2011
Chest-wise, Dylan is doing fairly well. His fingers are looking a little clubbed, and he always has gunk to bring up during his physio, but he’s not been ‘ill’ with a chest infection since June, when he grew Coliforms (gut bugs) on a swab and needed antibiotics to shift them. He has had some tummy troubles, particularly after eating fruit, so we’re not sure if it’s reflux or constipation. He’s eating a lot better now and not drinking quite as much as before, but he still drinks plenty.
He had a good report at CF Clinic last month and he’ll be having his annual review on 15th September. I’m not looking forward to it much, as the last two years’ x-rays have shown a decline in his lung health, with bronchial wall thickening worsening in the bases of his lungs.
Autism/education-wise he’s doing okay. He has at least another year in mainstream school and they are working on his transition into Year 2 with him. They had him making regular visits to his new teacher/class at the end of term and he has a social story to read over the holidays to keep him reminded about the changes. He will also be going into school a day early to meet his new teacher and see his new classroom, as the building has had some renovations to it over the holidays.
He has enjoyed the summer holidays so far and although it took him a few weeks to settle into the new holiday routine, he is settled now and enjoys our mini routine. He is also now doing GREAT with his PEP physio, which he has every morning. It’s much quicker than percussion, and still gets him shifting the gunk. He loved our summer holiday to Legoland, my family in South Wales, and a trip to West Wales, and he LOVED riding the rollercoasters at Legoland and Oakwood!
His speech seems to be improving; his sentence structure has definitely improved, as has his ability to use his/her and he/she more accurately. He is also taking a little more interest in reading, asking what things say, and asking how to spell things. He is also asking lots of questions about himself and the world around him, which is great!
He’s really looking forward to his birthday, which is only a week away now, and he’s looking forward to having a riding lesson and a party at a nearby soft play place. He also has a hospice stay coming up before he goes back to school!
Thank you very much to Jessica, Emily & Poppy-Mae, Tracy (Bristol), Kelsey, Karen (Sami), Maria S, Shelly, Libby, Anne & Kaitlin G, Trina, MJ, Jane, Jenny, Claire, and Helen E for all the fantastic cards! Thank you to Despina, Dottie the Dalmatian, Claire, Libby, Anne, Catherine and Lisa for all the lovely postcards! Thanks to Kate, Tapan, Alvaro, Shannon & Elsa, Maria & Michael, Anne & Kaitlin G, Dottie the Dalmatian, Sarah G, Noah, Dominic Firth, Lisa and Kelsey for the lovely letters. Thank you to Katie for the picture; to Shannon & Elsa for the snake, mask and foam plane; to Anne & Kaitlin G for the blue sticker book; to Nicola Jane for the Spiderman toothbrush; to Maria & Michael for the Bart Simpson stationery; to Trina for the stretchy lizard; to whoever sent the goodie bag; to Kelsey for the notebook and all the lovely stickers; to MJ for the stickers; to Kate Dee & PP for the Tonka car; to Noah for the drawing; to Anne for the book; to Catherine for the space kit; to Libby for the superhero monkey; to Lisa W for the Spongebob sticker book and chocolate; to Helen E for the pompoms; to Dottie for the party bag; to Lisa for the dinosaurs; to Tez for the magic painting book and bubbles; and to PP/Kim for the make your own aliens kit (he loved making them!), the Ben 10 sticker album and the family games set!
Update 1st May 2011
Dylan’s had a good few months health-wise. He’s had the odd flare up of his asthma and a few episodes of tummy pain, probably related to his eating relatively little compared to how much he drinks. He needs to eat a little more and he particularly needs to eat more at school, as often at lunchtime, he will have 4 Creon capsules and then not eat anything for lunch, preferring to go out to play. So we have spoken to his teacher and a stipulation has now been added to the new draft of his Statement to specify that he should always eat SOMETHING at lunchtime, in order to give the Creon something to work on. The CF nurse also said that we could give him a dose of Lactulose when he has episodes of stomach pain which has helped as well.
His Statement needed a lot of adjustment this year, as he is now significantly behind in both his reading and writing, and is starting to fall behind in his numeracy, due to his speech delay, language comprehension difficulties, and his poor short and long term memory and poor concentration skills. So there are new strategies being put in place to help him. He is always trying his best and always making a little progress, but his progress is so slow that his peers are pulling further and further ahead of him.
He just had his first proper eye test, which showed that he is a little long-sighted, so he has been given his first pair of glasses, which should hopefully make reading and literacy easier for him and hopefully he will now get less headaches!
Apart from all that, he’s doing well. He’s had a couple of heavy colds, which did go onto his chest a little now and then, but he picked up again fairly quickly. He has coped pretty well with life, autism-wise, although he did have a few wobbly times during the Easter holidays, because his daily routines changed so much. This is partly where his comprehension difficulties make things harder, because he struggles to understand what is going on a lot of the time, and can either get the wrong end of the stick, or be completely clueless and get distressed. He gets there in the end though!
He is also having an assessment by the Educational Psychologist next week, and some people have also asked whether he may be dyslexic, or whether maybe he would be better suited to the local special school, but we’ll have to wait and see what the professionals think. Personally, as long as he is in the place which will maximise his potential, then I don’t mind where that is.
Here’s hoping for a happy, healthy summer!
Thank you very much to Qiao Feng & Ya, Michelle P & family, Claire, Dottie the Dalmatian, Dawn Goddard, MJ, Claire Connon, Leonie, and Helen Brierley for the beautiful cards! And thank you to Elroy, Dottie the Dalmatian, Claire, Liz, Laura & Emma, and MJ for the lovely postcards! Thank you to Dottie the Dalmatian for all the lovely letters! The children love reading them! Thank you to Sarah G for all the lovely letters you send to both children, they enjoy reading them! Thank you to Jack Anyon for the letter. Thank you to whoever sent the Valentines note! Thank you to whoever sent the door hanger; to MJ for the dinosaur photo and Easter basket kit; to Dottie the Dalmatian for the cress seeds, and the egg decorating kits; to Post Pals for the running hamster; to Jo Garrett for the Wii fishing game, the Kung Zhu hamster, and the pumpkin seeds; and to Helen T for the Toy Story bath set, flannel, fish and duck!
Update 1st February 2011
Dylan has had a pretty good few months. He caught Norovirus in early December, which knocked him for six for a few days, but once he recovered from that, he had a good Christmas, and has stayed pretty well apart from the odd cold. He’s occasionally chesty, but it doesn’t seem serious at the moment, and his latest cough swab was clear. He also did great at CF Clinic in early January! He scored a lung function in the high 80’s and his consultant was very pleased with him!
Regarding his autism and learning disabilities, he was assessed by the speech therapist in November, and he is nearly two years behind in his speech development. He scored low on his vocabulary and even lower on his sentence structure. He’s also really really struggling with learning to read and even just with learning the alphabet, but recently I’ve been teaching him his Jolly Phonics at home using a sort of sign language, and he can now say almost all the sounds in the alphabet. Once he’s sure of all the sounds and signs, then I’m going to start linking it to letter shapes. It’s slow going, but he’s finally making progress.
Here’s hoping for a good few months of health, especially for when we go to watch Daddy run a half marathon for the CF Trust in Blackpool in late February, and for his and Seren’s hospice stay in March!
Thank you to June, Marli & parents, Helen T, the Homberg family, Lynn, Kate Dee, Stacey, Maria, Claire, Jacqueline, Dasher, Dancer, Despina, Lidy, Sarah G, MJ, Tez, Claire, Penny, and Helen Brierley for all the fantastic cards! Thank you to MJ and Claire for the fab postcards! Thank you to Dottie the Dalmatian for all the lovely letters! Thank you to Sarah G for your letters!
Thank you to Post Pals, Kate Dee and another anonymous sender for the Halloween goodie bags! Thank you to Malmesbury Youth Development Centre for the Christmas tree and keyring; to Maria for the keyring; to Anna for the picture; to whoever sent the Sheriff badge and Toy Story Top Trumps; to Post Pals for the sweets, chocolate and Post Pals badges; to Stacey for the stickers; to MJ for the indoor sparklers, monster snap cards, McDonalds erasers, Spongebob keyrings and stickers, frog keyring, walking dinosaur, and calendar; to our Elf for the Playmobil pirates and Buzz Lightyear voice changer; to Helen T for the Toy Story art tube, Toy Story mug, Lego police car, Toy Story stamper set, choc coins; to Tez for the bat; to Claire for the puppet, Dr Who figure, soldier keyring and chocolate; to Post Pals for the ‘make your own Christmas decorations’ and Thorntons chocolates; to Penny for the colouring book and crayons; and to whoever sent the choc coins and candy cane!
Update 28th October 2010
Dylan’s had a rough few months again. In his last update I said that he had been having some trouble with the fungus Aspergillus and at that point was about to finish a month’s anti-fungal treatments. Well, at the time he finished the course his chest sounded pretty good and he happily went off to stay at Fritton Lake for a four night stay with big sister Seren with the nearby children’s hospice. He had a great time there, but came back with a nasty cough again.
He had his Annual Review in July and his x-ray showed further chronic changes from last year, with bronchial wall thickening at the bases of his lungs. He wasn’t able to complete the lung function test, because his technique is very hit and miss, but his chest sounded quite clear, so the doctors weren’t too concerned. His blood results came back positive for Aspergillus as well, showing that it had been a problem for him recently. Because his cough was pretty nasty at the time, but his cough swabs were consistently coming back clear, the consultant felt that it could be asthma causing his symptoms, so she increased his Seretide inhaler to see if that helped.
It didn’t help much and then in early August Dylan was blasted by multiple infections at once. We took him to the hospital and they found that he had a crackly chest, so they put him on Augmentin antibiotics, but we had to take him back two days later because he was still being knocked flat by really high temperatures, and that’s when they found that he also had conjunctivitis, two ear infections AND severe tonsillitis, as well as the chest infection! So they doubled his dose of Augmentin which helped.
However it didn’t help his chest much. He was seen again on the ward in mid-September because of his bad ches, and because although his cough was disgusting and he was getting really upset at physio time, and was complaining of chest pain, his cough swabs were STILL coming back clear, the doctor put him on Ciprofloxacin antibiotics.
At CF Clinic in early October, the best lung function he could manage was 55%, his fingers were clubbed, he was still complaining of chest pain, his cough was disgusting, and so even though his swabs were STILL coming back clear, the consultant said he should have two weeks of intravenous antibiotics through his portacath.
He had those, and even though he hadn’t had any IVs for 22 months, he coped REALLY well with having the needle stay in his chest for 14 days and he was VERY careful not to knock his needle or undo the clamps. He also sat lovely and still every time I had to give his IVs and by the end of the 14 days his chest was much improved. Unfortunately, he found the finger prick tests to check his Tobramycin levels far more traumatic.
And now, nearly two weeks later, he’s recovered from the side effects of the IVs and his chest is the best it’s been since the spring! Physio time is almost a pleasure, as he has pretty much nothing to cough up, and he is so much happier. He loves going to Disability Football Club each week and he’s looking healthier than he has in months!
I can’t believe he’s now in Year 1 at school! He’s doing well at settling in and has got some nice friends who he loves to play with and he likes his teacher too. He’s still really struggling with his literacy, both reading and writing, but he’s a little better at numeracy, and he loves the more creative subjects and PE. He’s also had a Statement review and is still being allocated full time one-to-one or small-group support for all the hours he accesses school, which is a big help.
So we’re now hoping for an healthy autumn and winter for him!
We have lots of thank you’s since our last update. Thank you to Post Pals, Claire, Alan & Sylvia, Amy Benyon, Samuel Liv, Susan, Mai, Mandie Lowry, Ruby, Shahlaa, Becky, Ria, Amanda, Maria, Laura, MJ, Kate Dee and Marcella for the beautiful cards Dylan has received lately! Thank you to Claire for the postcards! Thank you to Claire, Linda Eldred, Dottie, Claire, Maria & Michael, Kate Dee, Michelle P Chloe Jack Kacey & Max, Jenny Orpwood, Kate Lauren & Estelle, Michelle Sophie & Frosti, Mandie Lowry, Kim Ginger, Penny Berrill, Helen Brierley and Maggie & Damson for Dylan’s fantastic birthday cards!!! Thank you to Murphy, Claire, Mandie Lowry and Alida in Italy for the lovely letters! Thank you to balloonbaboon.com for the balloon cow and balloon baboon; to Elle M for the smile badge and lights; to Post Pals for the bat finger puppet; to Mai for the colouring book; to Sheelagh Hawkins for the football doorbell; to Mandie Lowry for the make your own bat, Gary pencil sharpener, Spongebob stickers, Ben 10 socks, eye patch, Spongebob eFlyers, Spongebob flannel, Transformers puzzle, Tom & Jerry DVD, Toy Story alien, Spongebob snack pack, pencil and ruler; to whoever sent the GForce book and Lego jet; to Helen T for the colouring book; Maria & Michael for the Spiderman activity book; to Claire McCartney for the Charlie & Lola stickers; to Lucy & Richard for the activity book; to Helen Brierley for the Spongebob puppet kit; to Shahlaa for the alphabet stickers, hot chocolate sachet, Spongebob busy pack and sticker book; to Michelle Sophie & Froti for the cardboard make a bat; to Mandie Lowry for the Buzz Wallwalker, Little Einsteins stickers, Toy Story song book and CD, and Go Diego Go clock book; to Penny Berrill for the Toy Story notebook, pencil, ruler, rubber and sharpener; to Helen T for the Toy Story cup, Toy Story Wizaround floor puzzle, Toy Story walkie talkies and Toy Story swim bag; to Helen Brierley for the pirate stickers; to Donna Bedford for the bracelet; to Alida in Italy for the stickers; to Becky for the monkey and pirate; to Helen T for the balloons, spiders, insects, felt tips, sand art pens and paper; to Marcella for the Ben 10 alien and Transformer; and to Margaret Howell for the cuddly dinosaur!
Although Dylan LOVES getting post, especially cards, he doesn’t get too much out of letters because he doesn’t have the concentration span to listen while I read them out, and without seeing photos of what people are talking about, it doesn’t mean too much to him. He much prefers cards with an eye-catching picture on the front and just a short note inside. Saying that, he really does enjoy the Dottie the Dalmatian letters, because they DO include photos, and so while I don’t read the letters out word for word, he looks at the pictures and we talk about what Dottie is doing in the photos, and he really enjoys those. He knows when he sees the blue paw prints on the envelope that it’s going to be a Dottie letter! Then Seren reads them from top to bottom afterwards and keeps them all! She especially liked the one where Dottie visited a stable!
Update 22nd June 2010
Dylan was doing pretty well during the spring, just having the odd cold, but his chest was playing him up now and then through April. We did various swabs, which all came back clear, so we just got used to him having a bit of a cough and to his chest sounding a bit wet during physio sessions. He was well in himself, but he just had a cough.
He had CF Clinic in early May, and did well with the lung function machine, scoring over 90% for the first time, but he still had a wet cough. We found out at the end of May that his cough swab had grown a couple of fungi – Candida and Aspergillus Fumigatus, which certainly explained his chesty cough, which was gradually getting worse and worse through the month.
He was coughing during the night, and all day, and I think over the month his lung function was probably declining, as he started to struggle with coughing fits when exercising, and was getting breathless much more easily.
He started Itraconazole (anti-fungals) on 30th May, and he’s now nearly completed the four week course, and his chest is much improved. He’s been coughing up an awful lot of gunk over the past month, which has been helped by him starting PEP physio with his first ever PEP machine, which he’s slowly getting the hang of. It’s really helped him to shift the gunk out of his larger airways, which was where it was getting stuck. The percussion physio was clearing his lungs, but he wasn’t able to cough the gunk up effectively, which has been greatly helped by the PEP machine.
Being unwell has definitely affected his autism, as he’s definitely been able to tell the difference in his body, which has worried him, but it’s also been educational for him, as he now understands that he has ‘bogeys’ in his chest, and that his new medicine is to help to get the nasty bogeys out of his chest, and that coughing them up into a tissue is really good. He also understands now that if he doesn’t cough them up, but swallows them, they go down into his tummy and then into his bottom.
He really dislikes the taste of the Itraconazole though, it nearly makes him sick each morning, and so he’s counting down the last few doses, and is very pleased that the course is nearly over.
He has his CF Annual Review (MOT) coming up next month, and he’s already had his blood tests done for this, and has to have an x-ray done tomorrow. I’m a bit nervous about finding out the results of his annual review, because last time they could see bronchial wall thickening in the bases of his lungs, so I’m nervous to find out if this has worsened over the past year.
In more positive news, he is very much looking forward to a four night hospice stay which is coming up next week, his first time sharing a hospice stay with big sister Seren! And he’s very much looking forward to celebrating Seren’s birthday in just 19 days!
Of course, he’s REALLY looking forward to his own birthday in September though, and has found the waiting absolutely agonising so far! He’s so impatient to have his party and invite all his new school friends!
Talking about school, he’s going to be going into Year 1 at school in September, and I’m a little nervous about it, because expectations of him will be higher in Year 1, and he’s REALLY struggling with learning to read still, although his writing is improving and he does now recognise some letters. I’m hopeful that his teacher will be working hard to settle him into his new class properly, with a ‘social story’ book about his new class for him to read through the summer, word lists for upcoming topics so we can help his vocabulary and give him a chance of keeping up with the rest of the class, and frequent visits to his new classroom.
Fingers crossed that his Aspergillus and Candida infections have cleared up, and that he’ll have a healthy summer!
Thank you to Kate Dee, Postie Sarah, Nicola, Maria & Michael, Fiona & Peter, Martin Jackie & Jamie, Kim Lawrence & family, Quackers, Helen Brierley, Emma Plummer, Kim Lee & Bridget, Stephanie Dom Karen & family, Postie Sarah, Elizabeth, Claire, Jenny Flack, Catie and Post Pals for the beautiful cards! Thank you very much to Post Pals, Max, Caroline, Sarah G, Ashley Green from Ifield Special School and Despina for the lovely postcards! Thank you to Karen Wright, Horndale County Infant & Nursery School, Marvin, Mitchell from Horndale School, Karen Drew, Lindsay F, Sarah Gilligan and Jack for the lovely letters! Thank you to Karen Wright for the photo; to Nicola for the chocolate rabbit; to Maria & Michael for the Cars book; to Helen T for the Hairy McLary books, Postman Pat book and bats and cats book; to Post Pals for the scary sticker book; to Max & Caroline for the chocolate treat; to Fiona & Peter for the cuddly Mr Bump; to Fiona for the Christian CDs for me and the bendy calculator for Adrian; to Quackers for the photos and the duck; to Helen Brierley for the seeds; to Marvin for the SpiderPirate drawing; to Mitchell from Horndale School for the drawing; to Karen Drew for the noisy animal and the Ben 10 frame; to Kim Lee & Bridget for the Ben 10 stickers and Spiderman colouring; to Stephanie Dom Karen & family for the Spongebob Top Trumps, teddy and toy car; to whoever sent the Spongebob; to Elizabeth for the toy bat; to Claire for the Ben 10 straw; to Lindsay F for the knitted bat and dinosaur; to Cobey for the make your own monster and pirate ship; to Claudia Meyer for the pirate stickers, Spongebob socks, flannel, chocolate, ball, badge, crocodile, puzzle, and pirate with boat; to whoever sent the Cushelle teddy; and to Post Pals for the fantastic LEGOLAND tickets for us all!!!
Update 27th March 2010
Dylan has had a good few months! He had a nasty cold at the end of November/beginning of December, but for the rest of December he was well, and apart from a few colds and asthma flare ups, he’s been pretty well so far in 2010, and his cough swabs have been clear. He is a good weight at the moment, and is making progress developmentally, although he is struggling with learning to read. He had his first Statement of Educational Need annual review at the beginning of this month, and they were pleased with the progress he’s made so far, and set him some new things to work on – learning to read using full words instead of phonics, taking turns and sharing, and sitting still and listening while playing with blu-tack at quiet times. His toilet training is great, although he does still have accidents on times, and still very much needs his nappies overnight.
He very much enjoyed Christmas, and is looking forward now to the Easter holidays, because we’re going to visit my parents, and he is going to have a three night stay at the hospice for respite care too! He hasn’t been to the hospice since last September and so he’s really missed it.
Fingers crossed for a happy, healthy Easter holidays!
Thank you very much to Margaret, Blitzen, Maria & Michael, Despina, Dasher, Martin Jackie & Jamie, Kate Dee, the Homberg family, Post Pals, Daniel, Helen T & Adrian B, Sarah, Beth Wendy & Doris, Becky P, Cupid, Kathryn, Vickie, William S, Claire McCartney, Katie, Tracy (Bristol), Laura H, Jessica, Jane, Brabourne & Smeeth Brownies, Sarah Kidd, Helen Brierley, Rudolph, Daniel & Joseph, Vixen, Emma & Jayden Barclay, Rachel Cridge, Hibiki, Jake, Bradley, Cody, Jake, and Billy for all the FANTASTIC Christmas cards!! Thank you to Becky for the Transformers postcard. Thank you to Kate Dee, Kim Ginger, K, Garry & Julie, Postie Sarah and Juno & Muffin, for the cards received so far in 2010, and thank you to whoever sent the anonymous Valentines cards! Thank you to the ‘friend’ who sent the Valentines postcard, and thank you to Sarah Hart for the postcard. Thank you to Edwin Elf, Santa Claus, Edward Elf, Jane, and Beddy Bear for the lovely letters!
Thank you to whoever sent Dylan some stickers; thank you to Becky for the mini bat book, bat picture, bat facts, and bat wordsearch; thank you to Dasher for the chocolate presents and Santa’s Magic Key; thank you to Cupid for the letter pack and tree decoration; thank you to Beth & Wendy for the Ben 10 Micro figures, Postman Pat cake mix, Making Faces sticker book, wooden pirate ship kit and chocolate buttons; thank you to Doris for the Night Before Christmas and Monkeys Magic Box books; thank you to Kathryn for the sweets and stickers; thank you to Vickie for the lolly; thank you to Beddy Bear for the bookmarks; thank you to Rudolph for the coins, spiders and bat; thank you to Daniel & Joseph for the snowman; thank you to Becky Paulinyi for the Christmas story books, cuddly Father Christmas; thank you to Debbie & cats for the spooky sticker book and jungle sticker book; thank you to Tez for the stocking with dog and giraffe; thank you to Postie Sarah for the Ben 10 jet balls and skeleton pyjamas; thank you to Kim Ginger for the space bubble gun; thank you to Holly for the bat, coin, spiders and chocolates; thank you to Helen T for the remote controlled car, paint your own train, Waybuloo books, Buttons, and balloon art kit; thank you to Elf Mel & Helper Nick for the pirates, the Lego fire lorry, Lightnin McQueen and Cars book; thank you to Jenny Bridger for the personalised jar of sweets; thank you to Prancer for the Santa lolly, bat ruler, bat and chocolates; thank you to Post Pals for the Smarties; thank you to Jessica for the big chocolate coin; thank you to Emma & Jayden Barclay for the stickers; thank you to Hibiki for the origami; and thank you to Billy for the paper plane. All of these were sent at Christmas.
Thank you to Garry & Julie for the plankton drawing; thank you to Postie Sarah for the stickers; thank you to Post Pals for the frog to prince egg; thank you to Juno & Muffin for the Thomas Tank Engine DVD; thank you to Rhiannon for the Thomas Tank Engine poster art set; and thank you to Debbie & the cats for the audio book and activity book.
Update 30th November 2009
Dylan has had a pretty good couple of months, with a few colds thrown in here and there.
On 14th September, Dylan started with the first of those colds, and so he stayed home from school the next day. He ate something, but he was very tired and his cough was nasty. He was off school again the following day, and he hated it! He wanted to go back to school so badly, but he was still coughing and sneezing, so he couldn’t go. And he was sad to miss what would have been his first swimming lesson. That evening, his cough was absolutely disgusting, and he was really tight-chested and rattly, so I booked him in to see the doctor the following afternoon, but luckily he brightened up through the following day, so he didn’t go in the end.
Happily, he was well enough to go back to school by the Friday, which he was very pleased about! His cold did mess his asthma up for quite a while, but by the Tuesday of the following week, he was able to get rid of the extra inhalers.
On 23rd September, Dylan finally had his first swimming lesson, and he loved it! He had some settling in issues, but each week he has been making fantastic progress, and he’s getting more and more confident in the water now. Yay!
On 25th September, Dylan had a 2 night stay at the childrens’ hospice and loved it! He went on trips to the zoo and to a local park!
From 28th September to 1st October, Dylan’s asthma played him up again, giving him a dry, wheezy cough, so we had to increase his inhalers and give him Simple Linctus to try and soothe his cough a bit, as it was really bothering him.
On 2nd October, Dylan had CF Clinic, and he was then 115 cms tall, and 21.7 kgs, putting him on the 77th centile for his BMI, which is great! His SATS were great at 98%, but his lung function was poor, only 60%, mostly because his technique was REALLY bad. So I don’t know what his lung function really was. His consultant said that his nasty cough was probably caused by a virus, as the glands in his neck were enlarged.
On 8th October, Dylan had his seasonal flu jab, and was very brave, and didn’t have any side effects from it.
On 17th October, Dylan came out in another cold, and by Monday 19th, he was still snotty and coughing, so he stayed home from school, and he spent all of Monday night coughing, so he had to have Tuesday off school as well. However, he was well enough to go back on the Wednesday, which he was overjoyed at! On the Thursday night, his cough turned chestier, but luckily, it was half term from the following day, so he didn’t have to miss any more school.
On Friday 23rd, Dylan’s Daddy (Adrian) was told that he had Swine Flu, and was put on Tamiflu, and because of Dylan’s CF, he was given Tamiflu as well, just in case he caught it from Daddy. Thankfully, he didn’t have any side effects at all from the Tamiflu, and neither did he catch Swine Flu! Phew! He still had his chesty cough though, which took him all of half term week to get rid of.
On 3rd November, Dylan had his first Parents Evening. His teacher was generally very pleased with him, saying that he’s settled in well, and that his strengths are numbers and shape recognition, and he LOVES junk modelling and art, but that he REALLY struggles with phonics. He can’t grasp it at all. So we need to work on that, both reading and writing letters. It’s a real stumbling block for him, so I think that’s going to take a while.
On 27th November, Dylan had his Swine Flu jab, and so far, hasn’t had any side effects to that jab either! Yay!
Fingers crossed for a happy, healthy December! This is the first year Dylan has really been aware of Christmas and understands a little of the role Father Christmas plays in the whole event, so he is REALLY excited about it all! And we can’t wait to share the experience with him!
Thank you to Tracy (Bristol), Becky Paulinyi, Kate Dee, Viks, Maria & Michael, Erica Durante, Sarah Gilligan, Karen (Sami) and Kim Ginger for the lovely cards! Thank you to Val Simms and Kate Dee for the great postcards! Thank you to Maria & Michael for the lovely letters! And thank you to S Gilligan for the Beddy Bear letters! Thank you to Sarah Gilligan for the paper rabbit, the lollies, the popping candy, the koala, the parrot, the fish kit, the butterfly kit, the 3 Clarice Bean books, the 2 masks, the Dennis the Menace book, the jigsaw kit, the cress kit and the needlepoint kit. Thank you to Post Pals for the stickers, the LEGO digger, the flying lantern, the chocolate bar, the cars chocolates, and the Spooky Sticker Book. Thank you to Maria & Michael for the pumpkin straw. Thank you to Sarah for the Thomas sticker & puzzle book. Thank you to Karen (Sami) for the witch cape, the reflective armband, the skeleton, the pumpkin straw, and the lolly, for both kids. Thank you to Kim Ginger for the Batman face paints!
Update 13th September 2009
Dylan has a pretty good summer!
On 23rd July he had a trip to the dentists and we found out that his being so ill all his life has affected the health of his teeth. His new bottom front teeth are marked with yellow spots and apparently it’s due to severe illness in his toddler years causing his teeth to have a lack of calcium. Apparently the teeth shouldn’t go bad, but we’ll need to keep an eye on them. I hope all his teeth won’t be affected.
On 31st July Dylan had his port flushed and was very brave, although it did bleed for a while after which bothered him.
On 4th August Dylan had a speech therapy appointment to score him ready for starting full time school and he did so well! He totally surprised the speech therapist with his recent progress and coped a lot better than expected with the tests, so we were really proud of him!
On 18th August Dylan had his first occupational therapy appointment and his therapist discovered that although, to our relief, he’s not got dyspraxia, he does have very weak finger muscles (apparently it’s quite common among autistic children and is another form of developmental delay) and so we have some exercises and work to do with him to strengthen his fingers ready for him to be able to learn to write.
On 25th August Dylan had another OT appointment and because it was quite challenging, his autistic symptoms came through a lot, and the OT had to work hard to keep Dylan focused or persuade him to do any tasks, but she gave us lots of tips on how to build up the strength in his fingers and she’s going to send a report to his school as well.
From 28th to 31st August, Dylan had a 3 night stay at the children’s hospice and had a brilliant time!
Then on 2nd September it was Dylan’s 5th birthday! And it was by far, his best birthday ever! He was so pleased that my parents were well enough to travel to see us for his birthday, and he had a lot of lovely presents to open that morning, and then had a bowling party in the evening, before going round to see Adrian’s parents later. He was happy all day long and enjoyed every second of his special day!
Then on 3rd September Dylan started full time school! He did so well that he was able to stay all day, instead of having to be picked up at lunchtime as planned! And he did the same the day after as well! He has just done another full week at school, with hardly any problems! The only ‘teething problems’ have been him not liking eating school dinners, and so he now takes packed lunches, and by halfway through the week, he was getting REALLY tired, so I am now walking him to school in the mornings and picking him up in the pushchair in the afternoons. I can’t believe how well he’s settled into school so far! Long may it continue!
I think this was by far the best summer holiday I’ve had with Dylan, and he loved going to Pleasurewood Hills, a play farm, going on holiday in West Wales, visiting my parents, the park, and going to Africa Alive, before his birthday and starting school.
I just hope that he stays well through the autumn and winter.
Thank you to Amy Singleton, Helen T, Kate Dee, Catherine, Hanna, Vikki, Kim Ginger, Debbie & cats, Jenny, Helen Brierley, June Junko, Maria & Michael, Laura, Jenny Orpwood, The Schauers, Rachel Cridge, and Tracy (Bristol) for the lovely cards! Thank you to Estelle Kate & Lauren, Liz Eckhardt, Sarah Gilligan, Mary Beth, the Schauer Family, and Fiona in Poole for the postcards. Thank you to Wendy Nixon, Marisa Jackson, and Kellie Morris for the notecards. Thank you to Lydia for the fab party bag full of goodies! Thank you to Vickie for the diggers and dumpers sticker book. Thank you to Helen T for the Cars sticker packs! Thank you for the flannel lollipop. Thank you to Kim Ginger for the two foam planes. Thank you to Debbie & cats for the Thomas sticker pad. Thank you to Helen T for the birthday balloon bouquet! Thank you to Helen Brierley for the ‘Jimmy’s Sunshine Book’. Thank you to Rachel Cridge for the stickers.
Update 18th July 2009
Apologies for the lack of updates over the past 7 months on Dylan’s page, apparently there were some technical difficulties with his page, but they’re fixed now and his recent updates are showing. This one goes from 26 April to 19 July. Due to the problem being linked to my updates being so long, in future I’ll be trying to limit the updates to medical and autism linked updates. For more in depth updates with photos though, feel free to visit my blog, which is linked as his homepage at the top of this page.
Dylan’s had an up and down few months, and on 28th April, he had his first port flush for 10 weeks (2 weeks late!) and HATED it.
On 7th May he started with a yellow gunky nose and we thought he might be getting a cold. The following day, he developed a slight cough, but he didn’t have a temperature and was eating well, so I wasn’t too worried. Over the following couple of days, his cough and cold got worse, so he had a day off school the next day and had lots of extra inhalers and physio, and went back to school the day after.
On 13th May, Dylan escaped from his classroom at home time, and gave Seren and me quite a shock when we found him wandering in the playground. Luckily no harm was done. He had a cough swab done the same day, and then after his evening bath he was very hoarse and snotty and his cough was much worse again, so he had some Vicks on his chest and some Simple Linctus which helped. He had a bad night that night so I kept him home from school the next day, but on the 15th, although he still had a bad cough, he was better in himself so he went back to school.
On 26th May, he had his another cough swab and his x-ray and blood tests done ready for his Annual Review in July, and he was very brave. On 31st May he came out in a cold, and so I kept him home from school. On 1st June he was full of yellow gunk again and hardly eating. The following day his nose dried up, and his cough started up and he was coughing up yellow gunk, which isn’t a good sign!
On 3rd June his cough was much worse and he coughed all night, so he was still home from school and he was just coughing and coughing all the time. He had CF Clinic on 5th June and he was up to 20.6 kgs, putting him on the 75th centile for his BMI. His sats were good and his lung function was 83%, but his cough swab had grown Pseudomonas, which explained the yellow gunk and all the coughing. Because, apart from the cough, he was quite well in himself, he was prescribed 3 weeks of oral Ciprofloxacin, with the safety net of IVs if his symptoms got worse or the orals didn’t shift the bug.
That night was the worst night with his cough, but then the following day he seemed to cough a bit less. By the 8th June I felt he was well enough to return to school.
On 24th June, I had a meeting with his nursery teacher to re-set his IEP targets ready for moving up to Reception in September. His teacher said that she was happy with his progress and that he could start the settling in process to his new classroom/teacher, and that they’d make him a social story book about what to expect in September.
On 6th July he had his Statement reviewed ready for Reception class and it was decided that he will have two days of attending Reception class from 8.55 am to 1.05 pm on the 3rd and 4th September. He will then try a full day from 8.55 am to 3.20 pm on the following Monday. His teacher will also build chill out times into his day, and he will be taking his cuddly ‘Batty’ into Reception with him to help him with quiet times like story time or assembly. I raised issues about his safety in the main school, because of the possibility of him escaping out of the front door or the garden gate at certain times, so the teachers assured me that they would be keeping a close eye on him.
The following day he met his new teacher and saw his new classroom and was very excited about it all. He also stayed for school lunch and coped REALLY well. He got his ‘Dylan Is Going To School’ book for us to read to him at home over the summer holidays.
The 10th July was his first ever school sports day and he coped really well with some extra support and he scored lots of points for his team. He also had nose, throat and cough swabs done ready for his Annual Review. He got his first school report too which was generally positive!
On 11th July he coped REALLY well with his first trip to the cinema and ended up enjoying it a lot. On 14th July he spent an hour in his new classroom and REALLY enjoyed it, and gave his teacher an ‘All About Me’ book that I had written from his perspective explaining about his CF, asthma and autism. Then 15th July was his last day at school nursery!
On 16th July he had his Annual Review at the hospital. He did his first ever urine sample and it was clear. His weight had gone up to 21.3 kg, and he was 112.9 cms tall, putting him on the 83rd centile for his BMI. His swabs were all clear, as were his blood tests, but they did show that his Vitamin E levels are too high, so his consultant dropped his dose down to 0.5 mls a day. He increased his Singulair dose from 4 mg a day to 5 mg a day, and lowered his Seretide dose from 2 puffs of 125 micrograms twice a day to 1 puff of 125 micrograms twice a day. His x-ray showed some bronchial wall thickening at the bases of both lungs, which wasn’t very nice to hear, but his consultant still said that he’s had the best year health-wise of his life so far. His bowel was rather full on examination, so we have to keep an eye on that. Oh, and the physio said that we need to encourage him to do lots of huffs during physiotherapy sessions and do lots of bubble blowing.
From 16th to 18th July he spent two nights at the childrens hospice and had a great time!
Fingers crossed for a happy, healthy summer!
Thank you this month to Tracy (Bristol), Maria & Michael, Kate Dee and Helen Brierley for the cards. Thank you to Maria & Michael for the postcard and to Margret Nagy for the notecard. Thank you to Helen T for the letter and Thomas cupcakes pack. Thank you to Tracy (Bristol) for the bat book and thank you to Kim Ginger for the ‘getting dressed’ jigsaws.
Update 26th April 2009
Dylan has had a pretty good couple of months! He was starting to get over his cold on 16th February, but it was clear that he’d lost some weight after not eating for nearly a week. He had his port flushed the following day, and was very brave, but HATED having a plaster put on afterwards! And on 18th Feb, Dylan went to the dentists and had a good report.
He went back to school on the 23rd, for what turned out to be six weeks of 100% attendance! An absolute first for Dylan, and we are over the moon!!
On 25th February, Dylan’s psychologist came round to discuss his recent progress and to chase up what the school are doing about providing help for him at school.
On the 26th we re-started potty training and after buying him a new, comfier toilet seat, he immediately got the hang of it and hasn’t looked back since! On the 27th he bumped his head badly at school when he stepped on a plank and it shot up and smacked him in the face, so we had to take him to the GPs to get checked over, but he was fine and the GP was happy for him to still go to the hospice that night for his respite care. He had a great weekend at the hospice, and when we picked him up on the 1st March, he had done really well with his potty training all weekend!
On 4th March Dylan wore pants for the first time and did fabulously well! In nearly two months, he’s only had about three accidents in his pants, which is amazing, and he now wears pants all day at home, and at school, and just wears nappies at night and pull ups for when he goes out walking or in the car. What a HUGE achievement for him!!
On 18th March, I attended a meeting at his school to discuss how to implement the advice set out in his Statement of Special Educational Need, and also to plan his move to full time school in September.
He had CF Clinic on 3rd April and he had a great report! He’d grown to 110.5 cms, and had gone up to 20.1 kgs, which puts him on the 77th centile for his BMI, which is fab! His chest was clear and his consultant was very pleased with him.
During the Easter holidays, Dylan had a lot of fun, but the highlight for him was getting to see some real live BATS at Bristol Zoo!! We were able to walk into their enclosure, so he could see them sleeping all curled up hanging upside down, and one bat kept flying around too, so he ABSOLUTELY LOVED IT!
He went back to school on 23rd April and his teacher had a surprise waiting for him, Batty, his cuddly quiet time bat! The teacher found him in a charity shop over Easter and bought him for Dylan to help him to sit still on the carpet at quiet times, which is working really well! He struggled with leaving Batty behind after the first afternoon, but now he’s helped to make Batty a box to sleep in when he’s not there, he’s happy to leave him behind.
Fingers crossed for some more good health!
Thank you to Jessica, Nikki, S, Kim Ginger, Helen Brierley, Post Pals, Julie B and Nicky Walker for the cards. Thank you to Julie and Jill for the postcards. Thank you to Kim Ginger for the letter. Thank you to SOLAK for the beautiful cushion, Dylan loves it and sleeps on it every night. Thank you to Post Pals for the cuddly teddy. Thank you to Kim Ginger for the stickers, reward chart and stickers, finger puppet and Flat Stanley book. Thank you to Helen Brierley for the Pat books and sheep mask kit. Thank you to Post Pals for the puppet kit. Thank you to Julie Barrett for the egg decorating kit. Thank you to Nicky Walker for the Postman Pat sticker box! Thank you to Debbie Gray for the football!
Update 15th February 2009
Dylan was well for the end of December once he finished his IVs, but January and February have been rougher on him.
He finished his IV’s on 23rd December, but he was left with a very sore chest from all the dressings he’d had on it, and we had to use Sudocrem on it for a few days to help it heal, as it was so sore and he found it very uncomfortable. On 24th, we received his draft Statement of Educational Needs through the post, which wasn’t nice reading on Christmas Eve, especially when we read that some of his assessment scores were off the bottom of the centile charts. But he had a lovely day on Christmas Day with lots of fabulous presents, and he really enjoyed the Christmas holidays!
On 5th January, I had a lot of discussions with the Advisory Teacher, psychologist and education department about his Statement, and where he should go to school, as part of the draft statement asked us for a decision on where we want him schooled. The decision we came to was that as the local special needs school doesn’t take children until they turn 7, he will go to the mainstream school until then, with full time one to one support from a properly trained learning support assistant, and he may have some outreach work done by the special needs school based at the mainstream school.
On the 8th he went back to school, and then that evening went to the childrens hospice for three nights of respite care. He had a great time while he was there! When we picked him up on 11th Jan, he seemed to struggle to adjust to being back home at first, but then the next day he was very tired and had no appetite. By the afternoon he had started with a nasty cough, so that could have been part of why he struggled on the Sunday.
On the 14th and 16th he was really bad, needing lots of inhalers and extra physio. We guessed it might be asthma flare ups, but it was very weird.
On 17th, we found out that he is eligible for free nappies, which we were very pleased about!
His chest was really bad again on the 18th, and the next day, his chest was bad again in the morning, but cleared up in time for him to go to school that afternoon. We also got the first delivery of his free nappies, and they’re so great! Much more comfortable on him and much more absorbent!
On 20th, the physiotherapist assessed my physio technique, and was pleased with it. Before school that afternoon, he had a cough swab done, and that night his chest deteriorated and he had a really rough night. So the next day, I took him to the hospital to be checked, and although his cough was horrendous and he couldn’t even stop coughing long enough to manage the lung function test, his lungs sounded mostly clear and so the consultant prescribed him a two week course of Augmentin. I was pleased to see that he’d put some weight on, going up to 19.8 kgs, and 111 cms, which is great.
On 22nd he had another really bad day with his chest and no matter what I tried, inhalers, tons of physio, he just couldn’t stop coughing and it was making him really upset, so we took him back to the hospital, and they re-checked him, but again, they couldn’t find anything really wrong, and so they said we just had to wait for the Augmentin to kick in. We got some Vicks to rub on his chest, which seemed to help him have a better night’s sleep.
The 23rd was another bad day, but over the 24th and 25th his chest started to clear as the antibiotics kicked in, and so he went back to school on the 26th. They were obviously glad to see him, but they said that as he’s missed so much time over the past term he’d need to start from scratch with settling into the nursery, as it was as if he was starting this term, not back last September, and he’s still struggling to adjust to it all.
Then on 28th he had to stay off school again because he had some diarrhoea, which turned into constipation later in the day. That plagued him for another couple of days, until we gave him a dose of Lactulose on the 31st, which helped a lot. His cough turned chesty again on 1st February, but it improved again through the day on the 2nd, and he went to school on the 3rd and 4th, but he found school quite stressful, partly because he didn’t sleep well all week, waking very early in the morning and not being able to go back to sleep. We also received the final copy of his Statement on 4th February, so it’s now official and legal that he needs full time support at school.
He went to school on the 5th, but then woke up the following morning crying in pain from a very sore throat and he had a temperature, but luckily, he had CF Clinic that afternoon. When he was weighed, he’d lost 0.3 kgs, taking him down to 19.5 kgs, which meant that he’s now on the 60th centile for his BMI. He was on the 86th centile in December, so that’s quite a big drop, but still over the 50th, which is the acceptable centile for CFers. However, he only managed a lung function of 80%. His consultant said that it looks as if he’s been bombarded with bugs lately, and that hopefully when he recovers from them all, his weight and his lung function will go up.
That night, his sore throat turned into a monster cold, and he’s had a really tough time with it, and has missed a whole week of school with it. He barely ate a thing all day Saturday, Sunday, Monday, Tuesday, or Wednesday, and you could see the weight dropping off him. He ate some cereal on Thursday, and had a good lunch on Friday, and even yesterday, Saturday, he didn’t eat very well. The cold totally knocked him out, but he’s finally starting to get over it now, and his nose has mostly dried up, but he’s still getting his energy back, and he’s definitely lost more weight. Fingers crossed for a healthy, happy half term!
Thank you to Claire McCartney, Helen Brierley, Sue & Ethan B, Julie B, Rachel Wheeler, Kate Dee, June Junko, Viks, Jessica, and Anne Gairn for all the lovely cards. Thank you to Jenn for the note card. Thank you to whoever sent the card and reindeer food. Thank you to Courtenay for the Pirates of the Caribbean Will Turner. Thank you to Helen T for the Thomas fuzzy felts, Night Garden stickers, the play doh cutters, the play doh pizza party set, the 15 pots of play doh and the Mickey Mouse DVD! Thank you to Katie for the Thomas activity pack, the Rheneas book, the plane money box, the Thomas magnets, the giraffe and the chocolate Santa! Thank you to Vikki for the duck hooter and the cuddly reindeer. Thank you to Becky Paulinyi for the Lion King book. Thank you to Joseph, Jasmine and Sam for the four finger puppets. Thank you to Hilary and Muffin for the Star Wars hoversphere and the Cars poster art set. Thank you to Claire McCartney for the flannel. Thank you to Julie B for the Wonderful Farm Pig, and for the Mickey Mouse stickers. Thank you to Post Pals for the rainbow mobile, the elephant wristband, the stickers, cow, Tigger wash mitt, and balloon. Thank you to Helen Brierley for the colour changing ducks. Thank you to Anne Gairn for the pencils and the cars. Thank you to Julie B for the Charlie & Lola book. Thank you to Jessica Allan for the Mickey Mouse rubbers.
Update 22nd December 2008
Dylan has had a very rough month. After his vomiting bug on 16th November, he had three days off school and looked absolutely terrible. His appetite was affected and he was very lethargic.
On 18th November, the educational psychologist phoned me to discuss Dylan and said that he has ‘significant learning disabilities’. This was when we first seriously considered that Dylan might need to go to the local special needs school when he is able to at 7 years old, rather than staying in mainstream school. Dylan went back to school on 20th Nov, I asked both his teacher and his speech therapist what they thought, and they both said that it is a definite possibility.
Since his special needs pushchair arrived in mid-November, I have pushed him back and forth to school in it at least twice a day, sometimes three times a day, and it has been an absolute lifesaver. He just doesn’t have the energy to cope with all the walking, and also, from the autistic point of view, he finds walking very stressful, especially at the end of the day, and has found things much easier with the pushchair.
On Friday 21st Nov, the cough which had been troubling Dylan for a couple of days suddenly turned very nasty and croupy, and so we kept a close eye on him over that weekend. Sunday afternoon, his cough got a lot worse, so I ended up taking him to the hospital to get his chest checked out. His obs were okay, but when the Dr listened to his chest, she could hear crackles and wheeze, so she started him on a two week course of Augmentin, and put him on 4 puffs of Ventolin 4 times a day. So he’d only been back at school for two days before he was off sick again for all of the following week with his chest infection and his autistic symptoms went through the roof, he wasn’t coping at all. His appetite has been up and down, and he’s looked so pale and washed out and tired.
Dylan was reviewed again on 27th November at the hospital, and a new Dr said that his chest was now clear, and so he could stop the extra inhalers and keep on the oral Augmentin until CF Clinic on 5th December. So we did that, and his chest went straight downhill the same day. As soon as the inhalers were stopped, his cough came back full force and he had some awful coughing fits that night. So the following day, the CF Nurse came to see him and got him a 3 day course of oral steroids, which he started on the Saturday morning.
Dylan was off school again on Monday 1st December, but that afternoon, his steroids finally kicked in and he had a good few days with his chest. He finally went back to school on 2nd December.
The 5th December was CF Clinic. Dylan is now 19.7 kgs and 107.7 cms, and his oxygen level was 97%, and he had a go at the lung function test, but only managed to blow 75% of what the machine predicted he should have been able to for his age, height and weight. Then he was examined by the Dr and although his bowels and liver felt fine, he was breathing rather fast, and his chest was crackly again when the Dr listened in. So as he’d already had 12 days of Augmentin oral antibiotics, three days of steroids, AND extra Ventolin inhalers, the Dr decided it was time to bring in the big guns and put him on IVs. So it was agreed that Dylan will start IV’s on 9th December.
Dylan had a really bad day with his autism on 6th December, and on 8th December I tried to prepare him for starting his IVs by showing him some photos of him on IVs in the past, which he seemed to take a bit of notice of. On 9th December, we went to the hospital to get Dylan’s needle fitted in his portacath and have the first dose of his IVs on the ward. He coped quite well with having the needle fitted, but wasn’t happy about it staying in his chest for longer than the couple of minutes it would normally stay in for a port flush! He was VERY tired that afternoon and had a long nap on the settee, and then that night, he pulled his port needle out, so we had to go back to the hospital and get another one fitted.
Wednesday was a tough day. It was the Christmas Craft Afternoon at school and at first Dylan seemed to be coping well and enjoying himself, but soon he was unable to cope and got very distressed, so I had to take him home early. His teacher told me that his behaviour that day wasn’t just limited to the craft session, apparently they have that same problem with him from around 2.30pm every day, and they just can’t do anything with him from that point on.
So when we got home, I rang the speech therapist for some advice, and she said that Christmas is a difficult time for autistic children in general, because of all the changes to routine, but that it is clear that Dylan isn’t coping with school very well, which is being worsened by him suddenly starting IVs on the Tuesday. Her advice was to keep Dylan off to rest him for the rest of the week, to give him time to get used to the IVs, and to speak to his teacher about reducing his hours at nursery, because he clearly starts flagging at 2.30 pm and if he’s not able to cope with being there after that, then there’s no point in him being there, because he won’t learn anything.
So he had the rest of the week off school, and then on 13th December he had another unplanned trip to the hospital, after pulling his port needle out again and getting it stuck in his chest.
On 17th December, Dylan had his continence assessment to see if we can get free nappies for him. We worked out that we’d need 6 pull ups a day and 3 nappies at night, which made 63 nappies/pull ups a week, or 252 a month. Wow! There was quite a long form to fill in, listing all his conditions, and all his medications, all his developmental delays and learning disabilities, and his continence history. The health visitor seemed quite hopeful that we’d qualify for the free nappies, but that we are very unlikely to hear anything until after Christmas now. Fingers crossed that we will get them, as it would save us a fortune.
At the moment, Dylan is due to finish his IVs on 23rd December and hopefully he will be well enough to do so.
Thank you this month to Jessica B, Jenn, Kate Dee, Maria & Michael, Despina, the Homberg family, Tracy (Bristol), Helen T, Martin, Jackie & Jamie, Sarah Gilligan, Julie B, Ria & Chris, Vikki and Courtenay P for the cards. Thank you to Karen (Sami) and Jenn for the postcards. Thank you to Julie B for the ‘grab a gift game. Thank you to Vikki, Courtenay P and Helen T for the parcels, they are now sitting under the tree waiting for Christmas Day!
Update 16th November 2008
At the end of September we ran into a few teething problems with Dylan’s new school nursery. Although they are used to children with autism, they have no experience of children with CF, so it’s been a bit of a learning curve for them, but things have settled down since.
He had CF Clinic on 3rd October and Dylan had gone up to 18.7 kgs and 107 cms, which is the 72nd centile!! He was seen by the consultant and he was pleased to hear that Dylan had gone 10 months without IV antibiotics. He said that if he gets through until the spring without needing any more IVs, then he could start reducing his treatments, maybe by cutting out the Colomycin nebs and just having the TOBI nebs, 28 days on, 28 days off, and of course, the DNAse nebs. He was quite concerned about the wet cough Dylan had had for the previous month though, even though all his swabs had been clear. He said that as he’s only on Azithromycin three times a week as his oral antibiotic, he needed to have two weeks of Augmentin to see if it clears the cough. Apart from that, he was really pleased with him.
In October I had to fill in Dylan’s Statement of Educational Need forms, which wasn’t a nice experience, focusing on his negative points and his delays.
However, he was REALLY good for his flu jab! He pulled up the sleeve of his t-shirt and gave the nurse his arm with a huge smile on his face! And he didn’t even flinch when she jabbed him! What a brave boy! And then that night he ate spaghetti in tomato sauce for the first time and really enjoyed it! This was a huge milestone for him, as it’s a wet, sloppy food, which he’s always avoided before, because of his autistic symptoms.
He also had his appointment to discuss the medical side of his Statementing process. After the appointment I took the kids to McDonalds for lunch and when we’d sat down with our meals I went to get Dylan’s puree ready for his Creon and realised that I’d forgotten to ask for an empty cup and spoon to mix it with. So I decided I’d try Dylan on swallowing the Creon capsules again. We tried him a little while ago, but he just chewed it up, pulled a face, and spat it out, so I wasn’t expecting him to do any different this time, but I gave him the tablet and pantomimed putting it in my mouth and swallowing it. Well, he put it in his mouth and did it and then he did it three more times! Yay!
His psychologist also saw him at school and assessed him. She said that he had made some ‘okay’ progress, but I got the feeling she had been expecting to have seen more progress over the past year than she did.
On 12th November, I had a meeting with his school teacher to go through the educational side of his Statementing application and she had some more not very nice news for us. Dylan is only able to cope with a curriculum suitable for 22 to 36 month old children, making him between 14 and 28 months delayed now. This means that he’s so far not managing to catch up with his peers at all and that the gap between where he is and where he should be is widening.
Today, Dylan woke up at 5am vomiting. He proceeded to vomit every 20 minutes for the next five hours and then managed to sleep. He has stayed in his room all day, apart from having a bath, and he hasn’t eaten all day, but has drunk some juice. His temperature has been up to 38.8 C, so we’ve been keeping him dosed up on Calpol and Nurofen. Hopefully he will be feeling better tomorrow, but tonight he still looked very pale and drawn, and he definitely won’t be going to school in the morning.
Thank you to Kim, Jenn, Julie B, Linda B, Maria & Michael Carney, Karen (Sami) and Helen Brierley for the cards! Thank you to Jenn and Julie B for the postcards. Thank you to Julie B for the letter, the pencil and the Dracula model. Thank you to Karen (Sami) for the bat whistle, skull straw, skeleton, spider, pencil, rubber and lolly. Thank you to Helen Brierley for the wind up crocodile. Thank you to Post Pals for the cuddly elephant, the echo mike, the pop up clown, the car and the wooden train set.
Update 28th September 2008
Dylan hasn’t had a bad couple of months. From 16th to 23rd August we went to West Wales for a week’s holiday in a cottage, paid for by the CF Holiday Fund. Both children had a great time.
Dylan has had another assessment with the speech therapist she was very pleased with him as he has made good progress, but obviously, still has a long way to go.
Dylan went to the local children’s hospice for two nights respite care and had a fabulous time.
On 2nd September it was Dylan’s 4th birthday and he had a lovely day! On 3rd September Dylan started school nursery and is so far doing well. He has missed a lot of sessions due to Seren’s illness, due to a rash he developed after his MMR booster jab, and due to a cold he is still getting over, but he is settling in well.
He had CF Clinic on 3rd September and his consultant was very pleased with him, as his weight has now gone up to 18 kgs, putting him on the 52nd centile for his BMI and his examinations were good.
As I mentioned, he is still getting over a cold he caught from Seren at the beginning of this week, as it’s really playing his asthma up, but he’s had two cough swabs and they’ve both come back clear, so we’re hoping it’s just asthma and we’re increasing his inhalers. He has CF Clinic again on Friday, so we’ll see what the doctors think then.
Thank you to Julie B, Helen Brierley, Sheila, Zenith, Kate Dee, Linda B, Maria & Michael Carney, St Matthews Sunday School, Jenny Orpwood, Fiona from Dorset, June Junko, Karen (Sami), Jenn, Claire McCartney, Jane, Marge, Margret Nagy, Cathe Garnett, for all the lovely cards! Thank you to Helen Brierley for the Teletubbies tape, the Postman Pat & Jess postcard and the BUGS book! Thank you to Fiona from Dorset for the chocolate bar. Thank you to Karen (Sami) for the stickers, pirate telescope and parrot finger puppet. Thank you to Jenn for the 2 notecards and the Postman Pat cake mix. Thank you to William M & family for the Thomas movie camera. Thank you to Julie B for the book, Postman Pat play office and postcard. Thank you to whoever sent the Playdoh. Thank you to Clair Fraser for the purple gorilla, the Thomas play set, the Push n Go Thomas, the Ninky Nonk train, and the pull back Thomas, James and Percy. Thank you to Marge for the ‘Bless You’ token. And lastly, thank you to Claire McCartney for the card for myself and Adrian.
Update 7th August 2008
Dylan had his CF Annual Review. The results were very positive, with a 2 kg weight gain in the past year, and 4 cms height gain. His asthma is reasonably well-controlled, and he’s only had 1 course of IVs in a year, and only 3 days in hospital. His bowels are generally good, and his oxygen saturations were good. He had bilateral equal air entry into the lungs, no crackles, no rhonchi, no enlarged liver or spleen, no growths on cough swab, and his x-ray showed normal looking heart and lungs. It was also noted that his communication has improved.
Dylan has a stay at the hospice coming up at the end of August. He gets back to us just in time for his birthday on the 2nd September! I can’t believe he’s going to be FOUR! And then he starts school nursery the day after! He’s getting to be a big boy now!
Thank you to Helen Brierley, Hedayat, Hayley Thorn, Jenn, Rachel Cridge, Kate, Karen (Sami) and Kate Dee for all the lovely cards! Thank you to Sarah, Hope, Ellie and William for the card and the stickers. Thank you to Jenn for the postcard. Thank you to Rachel Cridge for the stickers. Thank you to Kate Dee for the 10 pots of Play Doh! Thank you to Julie for the letter and for the Kung Fu Panda mask, and for the picture. Thank you to Hilary and Muffin for the letter and finger puppets. Thank you to Jenn for the note.
Update 7th July 2008
Dylan has had an up and down month. He had a bad couple of weeks with his asthma in June, possibly due to higher pollen counts, or to do with the painting being done in the house, but he got over that eventually and his swabs were clear.
On 1st July, Dylan started with a cold, with yellow gunk coming down his nose and since then he’s not quite been himself. He had a couple of days off nursery while he was still snotty and although his nose has now dried up, his cough is getting slowly worse and he’s started coughing in the night, so we’re keeping a close eye on him, as the cough is getting gradually thicker. Since he’s been unwell, he’s also been quite a poor sleeper, not wanting to be left in his room at night, lots of tears and screaming, and then waking up crying in the night too. Hopefully when he shifts this bug he’ll sleep better again.
He’s got his CF Annual Review coming up on Tuesday, which will be a long day as it involves a lot of tests.
Thank you to Hayley, Despina and Post Pals for the postcards! Thank you to Karen (Sami), Helen Brierley and Jenn for the cards! Thank you to Hilary & Muffin for the letter and the stickers! Thank you to Fiona Wilson for the Roary book!
Update 10th June 2008
Dylan’s had a very busy month with appointments and his asthma hasn’t been great. On 9th May, he had a trip to the dentists to ask about his teeth grinding. The dentist said that although he is definitely grinding his teeth and there is damage there, it’s not too serious at the moment and he can afford to wait for a while until these teeth fall out and his new stronger second teeth come in. If he’s still grinding them then, we’ll have to think about doing something about it.
Then on 22nd May, Dylan had his developmental delays re-assessment at the local hospital. The Doctor thinks he DEFINITELY needs statementing for school and she has doubled his dose of sleeping tablets, because he’s not been sleeping properly lately. He has been waking up a lot in the night, multiple times per night, almost every night, which is killing us and so hopefully the bigger dose will help. She was also concerned to hear about the problems he’d been having with being very clumsy all the time. He can fall over six times in a 7 minute walk! He doesn’t seem to fall over anything, just over his own feet, and he is ALWAYS doing it. He is also terrible for walking into objects and people. I forever have to guide him out of people’s way, as he’ll just try to walk through them. So far we’ve been putting this down to his autism, but the Doctor was concerned that it could be Dyspraxia. The Advisory Teacher was saying we’d have to watch out for the possibility of this during his Autism assessment back in January, as she’d noticed a few symptoms, but now the Doctor has concerns too.
Then on 23rd May, Dylan spent two nights at the children’s hospice for his respite care, which he really enjoyed.
He wasn’t too well for part of half term with a bad cold, but he improved by the end of the week.
Since he started his double dose of Melatonin, his sleeping, his mood, attention span and WALKING has improved! He hasn’t fallen over more than twice in total while walking since!
Toilet training isn’t going so well anymore now though. For about 5 weeks he did really well, but after Week 5, everything suddenly stopped. The tutor on the EarlyBird autism course suggested altering the rewards, to spur him on again, but it didn’t work. So I left it for a few weeks, and then started looking for fresh ideas and my mother in law suggested trying him with a potty. So on 2nd June, we started trying him on that, and for a few days, he did start to come round to the idea, but then he went straight back off it, and since then he’s not wanted to use the toilet OR the potty. It might be that he’s simply not ready yet, as mentally he’s only between 2 yrs and 2 1/2 yrs, so maybe he needs to develop a bit more before he’s ready to cope with it.
On the 6th June Dylan had CF Clinic. He’s grown to 104.7 cm, which is halfway between the 75th and 91st centile. He’s still 17.6 kgs, which is just over the 75th centile. That puts him on the 61st centile for his BMI, which is absolutely incredible! They did his lung function and Dylan’s FVC was 103.5%, and his FEV 1 was 72.0 %. Great results! And his SATS were 99% too!
The consultant was a bit surprised that Dylan is still needing high dose Seretide twice a day, Atrovent twice a day, Montelukast tablet once a day, AND sometimes still needs a lot of Ventolin to control his asthma, but we’ve been telling him over and over since last July (when the kids saw the CF specialist) that we can’t get him off the Atrovent without his health declining. He was also surprised that Dylan is now on 6 mg of Melatonin at night. A dose of 6 mg per night is double the normal dose for a child under 5, but it’s clearly what Dylan needs and the consultant was reassured in the end.
Thank you to Helen Brierley, Kate Dee, Jenn, Post Pals, Karen (Sami) and Helen T for the lovely cards! Thank you to Fiona for the letter. Thank you to Helen Brierley for the Bob the Builder and Postman Pat tapes. Thank you to Helen T for the Night Garden magazine and Thomas magazine! Thank you to Vicky for the Rainbow mobile. Thank you to Kim Ginger for the Richard Scarry book and the 3D viewer Disney card!
Update 7th May 2008
Dylan’s had an up and down month. He was still having a bad time with his asthma and he missed some time at nursery because of all the coughing and wheezing.
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.
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 the beginning of 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.
Thank you to Helen Brierley, Rachel and Poppy the snail, Jenn, Kate Dee, Fiona, and Helen T for the lovely cards! Thank you to Clare Bray for the dog binoculars! Thank you to Helen T for the Thomas walkie talkies, drum and whistle! Thank you to Fiona for the pop up book.
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, but he scored 85%!! 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 which just leaves him on two antibiotics every day, bringing his total number of medicines down to 17 instead of 18 a day.
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’, so I decided to get two birds with one stone and do a book with him.
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. So I got him ‘Songs and Rhymes from In the Night Garden’. 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, and it’s a real quality time for me and Dylan together.
He really is like a different child since we started this autism course 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. 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, so we took him to the children’s ward to be checked over. He coughed all the way there in the car, and then in the hospital car park, he coughed himself sick, bringing up some thick sputum and some brown gunk, 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 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, Jenn, Michael & Maria, Erin F’s grandparents, Post Pals, Karen (Sami) and Helen Brierley for all the lovely cards! Thank you to Helen F, Kate Dee, Anne Gairn, Helen Brierley and Chloe G for the lovely postcards! Thank you to Anne Gairn for the Postman Pat and Jess figures. Thank you to K.Winch for the car rubber, pencil and blue snake. Thank you to Julie B for the wind up duck. Thank you to Helen Brierley for the bear stickers! Thank you to Anne Gairn for the Thomas stickers and sticker album! Thank you to Kate Dee for the Sir Handel train and the Bill & Ben and Mighty Mac books!
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, and while we were there 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, and 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 Non-Hodgkin 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, Jenn, Kate Dee, Anne Gairn, Colette Morgan, Jeanana/Jewana, Colette, Michelle, and Anna for all the lovely cards! Thank you to Okka, Helen F and Kate Dee for the postcards! Thank you to Jade and Phil for the letters! Thank you to Kate Dee for the Diesel train and the Thomas number chart. Thank you to Anne Gairn for the Nursery Rhymes CD. Thank you to Colette Morgan for the 2 finger puppets and 2 little figures. Thank you to Jade for the Charlie and Lola table mat and coaster! Thank you to Anna for the drawings of Thomas, Annie & Clarabel.
Update 30th January 2008
Dylan’s 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 the hospice from 10th – 13th January, which he really enjoyed. Then from 14th – 24th January, Dylan had his Multi-Disciplinary Assessment at the Children’s Centre. 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 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 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
As I said in the last update, Dylan 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 to ENT. 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.
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 in chickenpox on 8th December and he’s been quite poorly with it, hardly drinking and very sleepy. He’s also still fighting the Aspergillus 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, 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 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 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.
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 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 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, Calogen, and Enlive Plus. 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. Dylan was incredibly tired and very unsettled there, not sleeping properly, and hardly eating or drinking at all, but he enjoyed meeting all the characters and giving them a cuddle and he seemed to enjoy some of the rides.
We are now looking forward to Christmas and looking forward to having some family time together.
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!
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! 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.
Dylan had caught a cold and tonsillitis in mid-October, and a couple of days later 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, 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.
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, then the Lions Club took us to see the Hippodrome Circus in Great Yarmouth. Then we took them to Brewsters for a birthday meal.
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 he is being referred for a more formal assessment for a possible diagnosis of Autism; his ENT assessment is being queried; he is to have a gastrostomy plan considered; 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; 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 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, and after some very traumatic tries, they couldn‚Äòt get it out either, so they sent us to Norwich hospital, where they tried again, and 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 what was going on, and he HATED the name bands. He REALLY fought against the anaesthetic, 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 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.
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 on 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 him. 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.
Dylan’s cough swab from that clinic grew 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.
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 2am! 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 recently, 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 hay fever 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.
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’s trying to name TV programmes at the moment, and he’s also started saying ‘bye’ a lot more.
He had a lovely two nights respite at the hospice recently, and really enjoyed himself. It was his first time using the safe bed there, and he was fine with it.
He and Seren are going to Norwich on Monday (9th July) to see Dr Isles, the CF Specialist from Cambridge. It will be the first time that either of them has seen a specialist, so we’re all nervous and interested to see what will come of it.
At the moment, Dylan has a nasty cough, and Seren is coughing a bit too, so we’re waiting for cough swab results, which should be ready on Monday.
Dylan has just had some lovely cards from Helen T, Julie B, Alan B, and a very pretty one from America with buttons on the front! His favourite was the Thomas Tank Engine one, he loved it! Seren has had some nice cards too, her favourite was the princess card from Helen T. Fiona G has sent Dylan two lovely parcels with some gorgeous magnetic Thomas the Tank Engine and Polar Express trains, and some Disney’s Cars cars. He was over the moon with them! Thank you to all.
Update 4th June 2007
Dylan has had a really rough month. His cough swab from early May came back growing Pseudomonas again and he ended up on two weeks of IV antibiotics – his 16th course in 29 months. Then just ten days after he finished the IV’s, his temperature shot up to 39.5 C, and so we took him to the hospital. They said that the glands in his neck were huge, his tonsils were huge and inflamed with pus on them, and so now he has a really nasty bout of tonsillitis.
He hasn’t gained any weight since November, despite our hardest efforts to try and fatten him up and he’s now so skinny. He’s hardly eating a thing at the moment again with this tonsillitis, but at least he’s drinking. His temperature is still up and down and he’s feeling really rubbish. His Teletubbies and Thomas DVDs are keeping him happy though. ‘Tubbies’ is his new word and he’ll try to sing parts of the songs too.
Thank you to Kat for the fabulous push along frog, Dylan LOVED it! He pushed it all around the house for AGES! Thank you to the wonderful Fiona and Helen for your parcels, they have cheered both of the children up no end! Dylan especially loves the Polar Express train and the cuddly Postman Pat!
Update 4th May 2007
Dylan did well for most of April, but about a week ago his hay fever set off his asthma and he’s had a difficult week with lots of coughing and wheezing. This has meant he has needed a lot of his inhalers. He also lost his appetite and didn’t eat for three days.
Just as he seemed to be getting over that and gradually needing his inhalers less, he then got hit by a really bad stomach bug on Tuesday night. He was up all night being sick, and was very distressed. He then slept all day on Wednesday. He has managed to avoid vomiting since, but he’s got nasty diarrhoea and he’s hardly eaten more than a mouthful of food since Tuesday night.
In the last couple of days, his chest has also started playing him up; he’s got a nasty cough and starting to get temperatures. This might be contributing to his lack of appetite, and he’s lost nearly half a kilogram in a week.
He had CF Clinic today and they’ve started him on Clarityn once a day, to try and combat the hay fever, which seems to be affecting his asthma. He’s had a cough swab done today, so we’ve now got to wait until next week to see if there is any bacterial infection lurking in his lungs.
He was re-assessed at the developmental clinic on the 26th April. He hasn’t really made any progress that they can chart, as although he is now happier to be with people, gives more eye contact and has increased his vocabulary to about 40 words, he hasn’t developed enough to improve his scores. This means his developmental delays now range from 8 to 17 months delayed. His delays are now being termed as Global Developmental Delays, and they are wondering whether he may turn out to be diagnosed with some form of autism, but he is too young to make a diagnosis yet.
He has been referred to the Pre-School Liaison Group, who are arranging a Multi-Disciplinary Assessment. This will involve him attending a special nursery for 2 weeks, and while he attends he will be assessed by various professionals. It’s not nice to know this is necessary, but it’s good that so much is being done for him to help him.
So at the moment, he’s pretty miserable and he can’t even tell us what’s wrong. He is spiking temperatures, coughing, needing inhalers, pooing a lot, refusing to eat, isn’t drinking much and is very tired.
Update 11th April 2007
Dylan has had a good month although he did have tonsillitis and an ear infection. It did make him ill initially, but even though it gave him a horrendous cough, he fought it all off himself without having to resort to IV’s and so his doctors were over the moon.
His weight is still the same as it was in November, so we’re working hard to try and get his weight up.
His speech and communication has come on a bit lately. He’s now babbling a lot more which is wonderful to hear. He’s also started to try and parrot some words back to us, which is a huge step. He has another developmental assessment at the end of April, so we’ll be awaiting the results. We know he’s still a long way behind his peers, but at least we can see he is starting to progress, however slowly.
Thank you to Kate Dee and Julie for their regular cards and the Easter cards received are absolutely lovely!
Update 2nd March 2007
Dylan is now out of hospital, and he has finished his course of IV’s, which ended up lasting for four weeks. He did improve slightly on the IV’s, and he was also given a course of steroids to help him recover. He has now got his appetite back, and his wheezing has improved, but his wet, rattly cough has never left him, although it did get more infrequent. Today, however, his cough has worsened again and so we are really hoping that he isn’t going to go back downhill again.
He has his CF Clinic appointment tomorrow, and he will be seen by his consultant then, so hopefully we will know more tomorrow. It is possible he might need more IV’s, or they might want to do another throat swab and see if they can find out what is causing the cough, or they might want to try him on some extra oral antibiotics.
Dylan, Seren, Daddy and I, are going to the children’s hospice for the weekend tomorrow, to give me and Adrian some respite from caring for Dylan. Hopefully the weekend will be enjoyable for all of us.
Thank you very much to the very kind people who sent Dylan gifts recently, his favourites were the Postman Pat DVD, the heart-shaped balloon and the board book (which he did unfortunately eat!).
Thank you to everyone who sent cards and presents for Seren as well, as she really struggled with being apart from me and Dylan so much. She is a terrible worrier, and so didn’t cope very well with the past month. The cards and presents really cheered her up and made her feel special, and for that I am very very grateful.
Update 9th February 2007
We took Dylan to see the consultant this afternoon and his oxygen levels were down to 91-93 % (they like them to be above 95%) and he certainly showed off his horrendous cough to the doctors and nurses. He is still the same weight as before, still has no appetite, etc.
The consultant talked to the specialist in Norwich and he recommended keeping Dylan on his Ceftazidime IV, but stopping his Gentamicin IV (using this one for more than 3 weeks damages the hearing/kidneys and Dylan’s now had 3 weeks of it) and switching to IV Colomycin.
The new IV has to be given 3 times a day through a drip infusion, so I can’t bring him home, as I can’t do drips at home. I can do bolus doses or syringe driver doses, but not drips. So he’s got to stay in for the whole week’s course.
He’s really feeling rough tonight, tons of coughing, coughing until he gags, and he’s quite grumpy with it as well. He had a huge tantrum at around 5 pm, kicking and hitting me (really hard, I’m still sore!) and screaming his head off hysterically, which of course triggered wheezing and lots more coughing, so I tried to give him his inhaler which made him a million times worse tantrum-wise.
He eventually calmed down and dozed on my lap for an hour or so, but was still grumpy when Daddy woke him up for his physio about 6.30 pm. From Monday they’re going to get the hospital physio’s to do Dylan’s physio morning and evening (never had that before!!), which will make things a bit easier.
Update 8th February 2007
Dylan has had a very rough month. He started coughing in mid-January and grew a bacteria called Pseudomonas on his cough swab. He started oral antibiotics for this, but 3 days later he had declined significantly, and a chest x-ray showed that 1/3 of his right lung was covered in infection. He started intravenous antibiotics for this immediately, and has now had 3 weeks of these, with hardly any effect.
He is still very unwell with a very nasty cough, no appetite, grumpy, temperatures, breathlessness and wheezing. He has had to stay in hospital for 3 nights so far during the course of his IV’s, usually for blood tests. He has been very brave and stayed in hospital all by himself.
He is going to be seen at the hospital again tomorrow, and will probably be started on yet another course of IV antibiotics, different ones to the course he’s just finishing, and may have to stay in hospital again while he’s on them.
He is struggling with being so unwell for so long, and big sister Seren is struggling too, as my friend has had to take her to school and pick her up for me, and she doesn’t like that much. She also has to accept less attention at the moment because of Dylan requiring so much more care, and although she is very good about it, because she really loves Dylan, it makes her sad.
Update 3rd January 2007
Dylan was diagnosed with developmental delays in early December. His understanding of language, his self care skills and his social development are all about 12 months delayed. His speech development is about 9 months delayed.
His health has been kind to him over the past month; he has had all his normal treatments, but hasn’t needed any IV antibiotics, which is a huge relief. He actually enjoyed Christmas Day a lot more this year as well. Last year he did nothing but cough and cry, but this year he hardly coughed at all. He got a bit overwhelmed by it all, due to his developmental delays, so there were quite a few tantrums, and he got very tired, but overall he enjoyed himself.
He has also been allocated 10 nights respite at a local children’s’ hospice, which will be a hugely positive thing for him and for us as a family, and there is also a monthly support/play group which we hope to go to.
Social Services Children With Disabilities Team are also going to give us some support, by funding two mornings a week at a local nursery for him, which I’m sure will really help him with his developmental delays.
Thank you for all the beautiful Christmas cards Dylan has received for Christmas, they have made our front room look very festive! Also, thank you to Fiona for the very sweet message. Thank you so much to the wonderfully kind people who sent Dylan presents for Christmas. He loved them all, the Postman Pat van, the stocking making kit, the Royal British Legion teddy, the Dinosaur book, the art set, the Mr Men jigsaw and the magic painting book. THANK YOU.
Update 2nd December 2006
Dylan did really well in October, but he’s had a bit of a rough month through November. He had a two week chest infection which he fought off himself, and then last Thursday he caught a virus, which aggravated his asthma, and so at the moment he’s coughing himself sick and waking a lot at night. He’s been prescribed steroids for his cough, in addition to his regular inhalers, so hopefully they will kick in soon and he will be able to enjoy the run up to Christmas. He’s due a portacath flush in the next week or so as well, so I’m sure he’ll be brave for it. He’s just been allocated some respite at a hospice in the area, so hopefully he will benefit from that as well.
Thank you very much for the Rupert DVD, the stickers and today, the Christmas paper chains, and the Teletubbies finger puppet, all of which he has loved. A general thank you to all the kind people who have sent postcards and cards, including two Christmas cards so far. They are very much appreciated, and have certainly made Dylan smile! Also, a huge thank you to those who sent things for Seren, as she has really appreciated it.