Story written 2007
Shortly after Erin’s birth at the maternity unit in Maidstone hospital, her mother became anxious that all was not well with her. The paediatric team tried to reassure the family that there was nothing to worry about. However, within 6 weeks Erin and her Mum were admitted to Great Ormond Street Hospital to undergo numerous tests and examinations where upon a Crouzon Syndrome diagnosis was arrived at.
Crouzons syndrome is a genetic abnormality that severely restricts the development of the skull and facial bones and has dire consequences on breathing, feeding, visual and audio capabilities. Because of the complexity of the condition, Erin was subjected to nasogastric and nasal pharyngeal tubes at an early stage to facilitate feeding and breathing. These were subsequently superseded by the application of a gastrostomy in her tummy and a tracheostomy. Erin has recently been able to feed adequately and as a consequence she no longer has the gastrostomy. Erin remains a patient of Great Ormond Street Hospital where over the years she has undergone fearsome surgery to her skull and face.
Erin has developed into a bright, mischievous and vivacious little girl and has rightfully taken her place at the local mainstream infant school, albeit with a one to one carer for her tracheostomy maintenance. She is making steady progress at school and is a very popular little girl with her peers.
Erin has a brother, Kyle, who is 9 years old and they are very good company for each other. She also enjoys the company of her cousins who live near by, one of whom she attends ballet classes with each week.
Update 3rd May 2008
Erin has had a particularly good month again. She had her yearly update at the local hospital and they seemed very pleased with her progress. She has now caught up on her weight but is just below average in height. The dental appointment in Ormond Street went fairly well and later in July when she has a general anesthetic for her trackie, they will possibly remove two back teeth. While there they noticed two loose teeth at the front and gave us a special fairy envelope for when they fell out. An hour later, sitting on the train eating a strawberry, Erin announced to the whole of the train that her tooth had just fallen out. We didn't think it would be that soon. The day after we were back in Ormond Street for her ophthalmology appointment. These are usually quite nerve racking as they can tell if Erin's brain is suffering through lack of room. Luckily, this time we had the all clear for another three months! Erin still needs to patch for two hours a day and was very upset to hear from doctors that when she finishes school for the summer they want to patch all day for about four weeks to see it that makes any difference. Not a happy bunny!
Erin has now achieved her beige rosette in Ballet. She is looking forward to her school fancy dress disco later in the month and can't decide between a bride or a nurse.
Kyle has just returned from a school trip to an outward bounds centre. He thoroughly enjoyed his time away and came back very tired and dirty and was welcomed home by a big kiss and cuddle in the school playground by his little sister! He was surprised more by the two cards waiting for him from Post Pals. Thank you. Kyle now has an appointment date at our local hospital in May. This is to check out his eyes. Fingers crossed they don't find too much wrong. He also enjoyed a trip up to Wembley with his dad to see the under 18's play. It was Scotland V England with England winning 2 - 0.
Thanks to Helen F from Plymouth for the card and stickers, Angie for the fantastic ballet card, Seren S for the beautifully made Princess Belle card and to all at the Post Pals team. Thank you to Karen (Sami) for the fairy card, Katie D for the Tinkerbelle card, Kate W for the rabbit card with the amazing facts on rabbits. Thanks also again to St Matthews Sunday School, Julia and special thanks to Kate D for the terrific spitfire card sent to Kyle. It was a lovely welcome home after his trip away with the school. Thank you to Jules who keeps writing and particular thanks to Olivia-Kate who wrote a wonderful letter enclosing some lovely stickers. Our thanks to all of you at Post Pals for the parcel sent through. Erin had a great time looking through all the lovely bits and she particularly like trying to make the rubber duck swim. To Karen (Sami) - Erin loved the fish pencil sharpener, but not to sharpen pencils with, instead she chased Kyle around trying to bite his bum! A huge thanks to Sarah who sent the football stickers to Kyle he loved them and again they arrived on his return from his trip with the school.
Update 8th April 2008
Erin is doing very well at the moment apart from a constant runny nose (part of her condition). We only had one visit to GOSH in March and this was to assess her hearing with her new PINK SPARKLY ear moulds. She did very well in the assessment but because of her selective mutism she could only complete half the assessment. We have another appointment at GOSH at the end of April with the Dental Department which is good timing as a couple of weeks ago Erin lost her first tooth and took great delight in putting it under her pillow for the Tooth Fairy. The tooth had been wobbly for a long time due to a surgeon damaging both front teeth during an MLB examination.
Erin took her first ballet exam on 5th April and we await the result. She has recently performed as a mouse in the school production of a play called The Elf and the Shoemaker. Talking of school, we attended a parent’s consultation with Erin's teacher last week when she received a really good report and we learned that she had gone up a reading group. It makes us especially proud of a special daughter.
We are awaiting an ophthalmology appointment for Kyle now as he had been complaining of headaches and blurred vision. He has seen an optician and has had to start wearing glasses immediately. He chose a lovely blue pair and wears them religiously (apart from during football, hockey, swimming and eating breakfast for some unknown reason!) The optician has advised he sees an ophthalmologist as it seems his left eye is lazy and might require patching much to Kyle's displeasure, but hopefully they will decide against it as he is nearly 10 now. It's bad enough getting Erin to wear her patch for 2 hours each day and I think Kyle would refuse outright. Kyle is looking forward to a school trip at the end of April to Sayers Croft at Guildford when he will be staying away for 3 days and I can't wait but I think Erin will miss him.
Last Sunday we went to London to see the Lion King and both Erin and Kyle were enthralled by it and thought it magical. Next weekend we go to Headlines Family Weekend at Coventry. Headlines is a support group for families with children with craniofacial conditions.
Thank you to Hanna and Julie Barrett for all their cards. Also to Karen (alias Sami) for the beautiful hand made card. Thanks also to Claire and Helen F from Plymouth for the beautiful butterfly cards with hair bands and to Kate and Eloise for Kyle and Erin's cards. Our thanks again to St. Matthews Sunday School at Torquay for their letters. Erin and Kyle will be replying soon. Thank you again to Maria and Michael for keeping us up to date. Erin received a card from a lady, I think Julie or Julia who is about to commence training as a nurse. Unfortunately, I have misplaced the card so Julie or Julia; could you please send me your address again so that Erin can reply to you? Thank you Hanna for the flower transfers, Erin enjoys very much rubbing them off. Thank you to our friend Julie Barrett for the Fifi stamps and Easter stencils. Erin loves glitter, especially covering herself from head to toe in it! Thank you Kate for the most beautiful teddy who was dressed in the most gorgeous purple dress, one really happy little girl was made the morning that arrived.
I apologise for anyone that we may have overlooked but I have been quite unwell during most of March and have had to take time off from work. I may have missed recording some post, so a huge thank you to anyone who has written that I have missed.
Update 1st March 2008
First of all we would like to say a big thank you to the children of St. Matthews Church Sunday School in Torquay for the kindness shown to Erin and Kyle.
Erin's ophthalmology appointment at Great Ormond Street on 7th February went well. They are still very concerned about the pressure on her optic nerves and were looking towards further sleep studies or CT scans, but after consultation with her Neurosurgeon it was felt that Erin may just have scarring from previous inner cranial pressures and that it would always remain. Hopefully, this should not affect her eyesight further. Erin was not at all pleased to find that she would have to continue wearing her eye patch for at least a further 3 months, some days it’s such a challenge to get it on. Erin also had an audiology clinic at GOSH in February for hearing assessment. Her hearing remains stable with the aids and she has been able to choose some new moulds for her ears and you've guessed it, she's chosen pink glittery ones.
We are having a lot of appointments with professionals regarding Erin's schooling. Once a year we have an assessment to enable her to keep her statement status allowing her to remain in mainstream schooling. This assessment is due at the beginning of March so February has been busy catching up with all the professionals. As Erin still requires her tracheotomy, they should still grant her statement status. We have now been referred to a lady whose speciality is Selective Mutism and she is developing a programme to assist Erin in overcoming her aversion to speaking to certain people and situations.
Erin remains well and is coming up for her first lot of ballet exams.
Kyle has given us cause for concern of late as he has been off colour and food for several weeks. It did worry us, but a visit to our doctor was reassuring when it was felt that he probably had a virus that was dragging him down. We shall just keep a close eye on him. However, it doesn't put him off his football and his team are doing very well at the moment and are currently 5th in their league.
Post Pals remains a valuable crutch to support such families as ours with children with disabilities. We remain eternally grateful for the kindness shown by Post Pals and by all those who make contact with the children. Thank you.
Thanks to everyone who sent cards, especially Michelle in USA for the Valentine card. Kyle would like to thank the person who sent his card and thanks for the 2 lovely cards from Katie W. Special thanks to Heidi Ja Kalso for the beautiful fairy postcard all the way from Finland (congratulations Heidi on your excellent English).
Thanks to Helen F and family for the card with the Dora stickers, to Becky Butler for the beautiful postcard with the flower fairy bookmarks, to Katie W for the ballet book (Erin is now trying to balance on the tips of her toes, much to our horror) and for Kyle's football stickers with which he was really delighted. He collects all football stickers and cards.
Update 2nd February 2008
Thankfully, Erin is going through a good spell at the moment and is generally keeping clear of infections and other ailments. The family are all enjoying a spell of comparative tranquillity at present after the ordeal of the last 3 or 4 years when much time has been spent by all at Great Ormond Street Hospital (and the local hospital) for major surgery procedures. However, we know that Erin's condition means that there is much to endure in terms of major surgery in the future before she reaches adulthood. The fact that she had the mid-facial distraction with RED frame so young (at 2 yrs old) means that she will no doubt have to endure it at least once more before she is a teenager. Also, there is always the threat of the need for further vault expansions. Our next appointment at GOSH is 7th February when we attend the Ophthalmology outpatients clinic. This is to check on the unusual build up of blood vessels in one eye that the doctors are concerned about. However, on the plus side, she is making good progress at school where she is happy and popular with her classmates.
Erin's brother Kyle is also doing well at school having been upgraded in writing and reading ability. He continues to enjoy his football having recently changed teams where he gets regular games and is a frequent goal scorer.
Our thanks to Kate Dee for the lovely spongy flower card, to the Post Pals team for the lovely Princess Design cards (Erin was amazed to see Sister Rosie's name), to the Pyne family for the update on their skiing holiday (Alice and Milly looked the part in their ski suits) and Nichola D for the beautiful homemade card. Special thanks to Julie for the Monkey Purse, to Kingsley for the print, to Helen Fulcher and her family for the Scrapbook Kit, to Daisy the Dog for the package and lovely Origami bits (Daisy's picture is in the photo heart on Erin's wardrobe door). Our thanks also for the e-mails, particularly from Charlene and Becky. We remain indebted to everyone at Post Pals for the support and kindness provided to Erin and her family in the short space of time that she has been a Pal. Thank you all.
Update 11th January 2008
Erin is presently remaining stable, but Mum and Dad were a little disappointed when her recent Ophthalmology check at Great Ormond Street just before Christmas, showed some concern over an excessive build-up of blood vessels in one eye. It is felt this might be affecting the sight of the eye and as a means of combating the problem; she now has to wear a patch on the ‘good’ eye for 2 hours each day. The experts feel that the cause of the blood vessel problem may well be a reduced blood/oxygen level brought on by sleep apnoea. This means Erin will be enduring yet another sleep study in the near future.
Serendipity played its part in us discovering the Post Pals site, but how glad we did as it has brought home to us the kindness and caring that exists towards disadvantaged children and their families. We are forever indebted to Post Pals and everyone involved in its management, for the pleasure it has brought to our family and to no doubt hundreds of other families. Thank you all.
We were overwhelmed by the kindness and generosity of all the lovely people out there who delighted Erin and Kyle with their gifts. We thank them all from the bottom of our hearts. We are trying to write to everyone where possible but special thanks to Erin & Kyle's "Elf", Janice Casey who delighted them both with her kindness. To Julie Barret for the Christmas Stocking which Erin hung on the Christmas Tree. To Emma Hoole for the Reindeer Food with which Erin and Kyle amused the neighbours by sprinkling sparkly porridge on the front garden and to the Pyne Family in Cumbria for the lovely gifts they sent Kyle and Erin and for their offer of moral support. It is comforting that there is someone out there who understands the trials and tribulations that a child (and her family) with a craniofacial condition goes through. Special thanks to Erica from New Jersey, USA, for her letter who Erin now mischievously calls "Erica from America". Also, Maria Carney and her son Michael who wrote whilst watching the New Year in. Thanks to everyone for forwarding their love to Erin. Wherever possible, acknowledgement and thank you’s are being sent in post.
Update 1st January 2008
Erin was delighted to find that she is one of this month's featured Pals, as was the rest of the family.
Erin and Kyle had a lovely Christmas with lots of good and exciting things from Santa.
Early in December, Erin spent a day at Great Ormond Street undergoing an ophthalmology examination where it was established that one of her eyes has a weakness. This has resulted in the requirement for the better of her two eyes to be covered for 2 hours each day to try to strengthen the weaker eye. It is felt that an underlying cause of her eye problem is an oxygen shortage due to sleep apnoea requiring yet another ‘Sleep Study’ in the near future.
Otherwise, Erin remains well and lively and ready for resuming school in the new term.
