Story written 2010
Dominic has had a tough life right from the start. He suffered from severe reflux which could not be controlled by medication and led to his refusal to eat. Eventually he was so dangerously underweight that they started tube feeds. He also suffered from aspiration pneumonia which has threatened his life on many occasions and led to him being ventilated, septic and with acute respiratory distress syndrome. He was given a very slim chance of surviving it and it was a traumatic time for everyone, including his brother and sister, who had to come and say their goodbyes. Thankfully he proved them all wrong and left intensive care only to spend the next 5 months in hospital recovering.
By the age of 2 Dominic had spent most of his life in hospital. He was nil by mouth due to an unsafe swallow and fed by a tube. He could barely sit, let alone run round like peers, and had severe muscle weakness. He was so used to spending his life in a tiny room with only me for company until someone came into his room to do something horrible to him that he became terrified of everyone. Even when we eventually came home he spent most of his time crying, and if anyone approached him smiling, he would automatically assume they were going to cause him pain, as that is just what the doctors and nurses used to do before they hurt him.
His gross motor skills were like that of a 6 month old and he wouldn’t utter a sound except to cry. Though he had started using Makaton sign language with me. Two muscle biopsies showed nothing conclusive but an EMG showed myopathy, so he was given the loose diagnosis of congenital myopathy.
Dominic got used to life at home, albeit still with huge anxieties when not with me or his siblings. Unfortunately any progress was lost last year when a portion of his bowel kinked which ended up with another long stay in hospital, a lot of pain and a huge operation to recover from.
Since his discharge our focus has been on trying to undo some of the damage that his condition and hospital has done to his confidence. With as much love and laughter as possible, I’ve slowly managed to pull this scared little boy out of his shell and to everyone’s amazement he started to talk, and laugh and play. Six months later I have a little boy with a wicked since of humour, despite the constant stomach pains, the dependence he has on me for all his care, and the medical regime that he endures to try and keep him at home.
He still gets very anxious outside our home but I hope he’s slowly learning that the world isn’t such a scary place.
Update 19th January 2015
After a lot of deliberating I think it’s time to let another family benefit from Post Pals. The children are that bit older and Dominic spends less time in hospital than he used to and Post Pals used to make such a difference to all the children that I want another family to experience it too. I never want the children to get the the point where they take other people’s kindness and generosity for granted. All of our regular writers are like old friends that we talk about as though we know them and we will be very sad to say goodbye, but happy that another family can find out the true kindness of strangers.
I cannot thank everyone that has ever written to us or sent us things enough. You are doing such a special thing and it has made a hugely positive difference to our lives at some of our darkest moments. I owe so much to Viks and all the amazing team that make Post Pals such a success. I feel so very sad saying goodbye, but know how lucky I am that it’s for all the right reasons. I wish you all happiness and health and thank you once again for making my children smile when there seemed to be so little for them to smile about.
Update 29th August 2014
In so many ways Dominic is doing wonderfully, so it is such a shame that the abdominal pain has come back with a vengeance and it now dominates a large part of his life. We know that he has a recurring abscess that keeps forming on an old operation scar, but aren’t sure why, and in the last month he has been in almost constant pain. He still manages to smile however, and we’re doing our best to just keep marching on with life. Getting away this summer was not without incident, but we managed it, which was just what we needed after what has been a pretty horrendous year so far. None of us were sad to leave our building site of a house behind (it’s been a building site for nearly 2 years thanks to cowboy builders doing the disabled adaptations).
In other news Elliot is moving on to Secondary school, and would like to thank everyone for all their lovely post, but he feels that he is taking away from younger children who need it more. However he would still be delighted to receive any books that anyone has read and thinks he would like (he reads well above his age), or science magazines etc that people that have finished with. He has a lot of challenges ahead which we are mindful of. In the last year we have found out so much about him that explains a lot of his difficulties over the past few years. Elliot has now been diagnosed with Asperger’s, ADHD, dyspraxia, chronic tic disorder and an underlying neuromuscular condition. I am immensely lucky that he is such a bright, sweet and caring boy though, and has made us all so immensely proud with how remarkably well he has coped with this complicated, confusing world that so many of us without any additional extras often struggle to interpret.
Lilia is still my unassuming flower in the middle of the two complicated boys. As always she is loving, affectionate and cheerful despite it all, but might need some extra big smiles through the post when Dominic goes back into hospital in the second week of September. She misses her mummy the most and finds it extraordinarily difficult.
As always thank you to everyone who sends post. We are shamefully bad at being able to reply to people individually, but please don’t think it’s because we’re not grateful. Once we know what ward Dominic is being admitted to we will let Post Pals know. The post arriving in hospital is his highlight of the day, and the joy it brings is infectious.
Update 1st May 2014
With the exception of a reoccurring abscess and continuing abdominal pain, Dominic has had a good run of health recently. This has meant that he can go to school regularly and has started settling back down again after his recent run of admissions.
Elliot has had a more difficult time. I can’t remember if I mentioned that he has had an Asperger’s diagnosis. That along with his age can be a very difficult combination. As always, Lilia puts up with being in the middle of them both with (relative) good humour.
Thank you for the letters this month and a special thank you to our regular writers. We love hearing from you all.
Update 28th January 2014
We had a really rubbish end of year with Dominic. Lots of things started going wrong and it seemed that with every week that he was in hospital we got another piece of bad news. It didn’t help that new teams started getting involved who lacked the courtesy to consult me before making decisions or actually talk to Dominic. I made the decision before Christmas that staying in hospital was no longer in his best interests and we left.
It meant that we got to spend Christmas at home and even though it was a bit of a blur it was so, so nice to be all together. Nothing could have prepared us for the amazing cards and presents that arrived throughout December for all the children though. We saved the Christmas presents and the children opened them on Christmas morning to squeals of delight. The cards stretched around the room as well.
It was obviously quite a stressful time coming home from hospital after another long stretch, and the cards, letters and parcels arriving from all over the world forced me to stop feeling sad and brought us warmth and happiness from so many different people. Thank you so much to everyone who took the time to write and send some Christmas spirit. Thank you especially to those people who remember Elliot and Lilia.
Unfortunately Dominic is going back into Great Ormond Street on Monday, it’s a prospect neither of us are looking forward to as you can imagine.
Update 12th November 2013
Dominic is now home and not expected to be admitted to the hospital again.
Update 13th November 2013
I am very sad to say that Dominic is still in hospital (Squirrel Ward in Great Ormond Street Hospital). It must be about 9 weeks now. At the moment we seem to be finding problem after problem which means I’m starting to feel a bit panicky. When it was just the large gastric losses that he gets after every surgery I was fine, but now he has problems with his bones and his blood sugar is really unstable. I have to watch him like a hawk and it has completely restricted what I can do as I can’t leave him at all (unless I can get someone to watch him for me). This means that Lilia and Elliot are rarely getting to see me and my home plan is out the window. We’re trying a tiny amount of growth hormone to try and help stabilise the blood sugar and help his bones, but it’s important that we don’t make him grow in the process as his muscle tone is so poor that he is highly likely to get scoliosis. To be able to do that we have to get funding though, and apparently the area that I live is so renowned for turning people down that the hospital won’t start him on it until it has been approved. He is getting less and less stable though, so today I begged. Fingers crossed.
Dominic had a lovely flurry of cards and letters for his birthday which really delighted him and we decorated the whole room with them, so thank you everyone for sending them. He hasn’t really received anything since though and I know would love to hear from you if you have a second. Equally, Lilia and Elliot are probably suffering the most at the moment, having been so amazingly strong I know Lilia now is really feeling down about it all. She smiles and says she’s fine, but sends me messages on her iPod that tell me a whole other story. If you think you can cheer her or Elliot up, I would be eternally grateful. Thanks as always.
Update 28th September 2013
What a roller coaster few months it has been. I had huge ambitions this summer, to finally get the children on a plane. They had been begging for the last few years and I just didn’t think the stress of going through security and taking all the medical equipment would be worth it, but having watched a few other families succeed with far more complicated children than mine, I bit the bullet this year and booked to go to Italy. Rather sadly, Italy was chosen as it’s his surgeon’s homeland, so there would be no language barrier if he had to have emergency surgery. As it turns out, a week before we were due to go his surgeon decided on the spot that he needed surgery, as soon as possible. I guess you just don’t notice how bad things have got when you’re dealing with it every day. We did still go away and it was the best decision, not only because Dominic was in so much pain while we were away that both he and I were certain that the surgery was the only option by the time we came back and secondly because a few days after we got back Dominic had another large bowel operation and I have seen very little of my lovely family since.
The operation cut out all the bowel that had previously been fashioned into a feeding tube (roux en-y jejunostomy). It was redone and then a new stoma was made. There were no guarantees that the pain that has haunted him since his 8 month stay in 2010-2011 would be cured by this, so everyone’s fingers were just crossed. This stay did not start well at all, the epidural failed so Dominic woke up in absolute agony and it took them hours to control the pain (every time they gave him morphine his breathing would slow right down so they would stop and then he would be in agony). On top of this, they forgot to put a catheter in while he was asleep. They then tried while he was awake with a tube that was too big. There was lots of blood and I have never seen Dominic so scared in my life and he was screaming in agony. I thought he would be traumatised for life, but a week or so later, now everything has healed, he has relaxed a little bit.
The surgery, in itself, went very well. The recovery is… well… slow. Dominic has his stomach on free drainage all the time, and at the moment they are managing to feed him 900mls into his bowel and he is losing over 800mls out of his stomach. I guess we shouldn’t be surprised that last night I got the disappointing news that the feed was going to be turned right down again as he’s obviously not ready. Frustratingly they have isolated him as well based on stool samples taken in 2011, so we are stuck in the room, and now he is going back on three machines again, we can’t even leave the room to go for a walk outside. I hope we are out of here soon, or I might just go mad.
So we will spend Dominic’s birthday trapped in his room in hospital. I have done everything to try and make it as special as possible, but it just isn’t the same. He has convinced the doctors and nurses to sing him happy birthday though, so come Monday we’ll find out how good they are at singing!
Elliot and Lilia are coping ok. Elliot’s behaviour has been very difficult recently, but with me not there, there is not much anyone can do but firefight until the present situation is resolved.
And finally to finish on a positive note, so far the surgery seems to have worked, there has been none of the awful pain he was having since. Long may it continue!
Thank you for all the post, I’m trying to post pictures on FB as often as possible to show people what a huge difference it make.
Update 5th June 2013
Dominic has been very up and down. There have been huge positives, like seeing how happy he was when his power wheelchair had the speed turned up, but worrying developments too. It seems like he is unhappy, really unhappy at school. Now I wouldn’t believe it for a second if I based it only on the smiling face I see whenever I’m in, but the tears, not wanting to go, not talking about any children in his class and some of the things he’s been saying (like people only like him because he’s in a wheelchair) have got me worried. Everyone wants to do the very best for him, but none of us feel equipped to know where to start.
And on the flip side of the coin Elliot has thrown us a curved ball. He was referred to Great Ormond Street by our local psychologist who thought he might have Tourettes syndrome. He ticks, but not really badly, but it was his behaviour that triggered her concern. The specialist Tourettes clinic think he has Aspergers however. Having just watched the latest Star Trek film which has a scene where spock is being over literal in his responses and proves so frustrating he is told to leave the room, both Roger and I turned to each other and said “Elliot”, because it was an exact replay of the sort of scene that would happen at home. I’ll write more about it on the blog, but for the time being we’re just waiting for the autism department to see him.
Thankfully Lilia seems alright… bit moody, but generally still her same happy self.
Thank goodness for Post Pals… keeps us sane! We’ve had some especially lovely letters, and thank you so, so much to the people who have written such kind things to me after reading the blog. I treasure them all. The children are sent some wonderful things too, in fact Lilia is taking a beautiful nature book she received into school tomorrow, she’s bookmarked all the pages she wants to show her class. And Bertie, your letter is sat right next to me. I feel honoured that your first ever letter was written to Dominic, he’s not very keen on writing, so it has sat waiting for me to find a minute to reply on his behalf. Apologies that it is taking me so long.
Update 1st April 2013
Life seems to have gone from hectic to just stupidly busy at the moment, but in a good way. Dominic is managing to go to school most days and is doing well. I’ve noticed a big change in him since he’s transitioned over to a power chair during his school day. He sits much better (as it’s a fully supportive seat) and doesn’t use up nearly as much energy. He’s a master at moving it, and the first time he came over to me when I arrived to pick him up I nearly cried. Most kids run up to their parents and the parents think nothing of it, but normally Dominic just stays put, so it was a very special moment.
Unfortunately the power chair is stuck at school as the house stiiiiiiilllllllllll hasn’t been adapted. Five years worth of bureaucracy and I’m utterly, completely fed up. It really hits home how restrictive it is when you see him moving around independently. He should have that at home as well. I have been told that all the paperwork bits are pretty much done now, but I’m not holding my breath. The other issue is the car. I drive a big car anyway to fit his manual chair in, but I would need a van to get the power chair in. Vans cost a ridiculous amount of money, so for the time being, the chair is staying in school and I’ll continue to lift him everywhere else!
Health wise he is doing ok, this coming month my focus is going to be on Elliot who is going up to GOSH for a lot of testing. I’m not sure how quickly I’ll hear anything or even if it will change anything, but it could well explain a few things. Sorry to be so mysterious!
Thanks, as always, for the amazing letters and cards and gifts that keep arriving. The kids have been making a concerted effort to write back, so I hope a few of you have received something. Apologies if you haven’t, it doesn’t mean that we are any less grateful. Just a little mention for a lovely 7 year old boy called Sam… Sam, your letter was passed around to everyone. We all adored it, probably because it was so wonderfully honest about what really matters when you’re 7. Dominic, although only 6 (and a half) totally agreed with your sentiments about brothers.
Update 29th January 2013
The last few months have been pretty tough for Dominic, although thankfully I’m starting to get used to the way that the abdominal pains affect him and have resigned myself to the fact that when things are really bad, the very best thing for him is to have as much pain relief as is safe and to rest and sleep. He had his MRI, and because of the unusual area of bowel that they saw when they reviewed the pictures he then went for an ultrasound. The significance of the ultrasound, it seems, was that the unusual area was no longer there. As always with Dominic there are no absolutes, so when we went to see the surgeons we were presented with two options, major surgery or doing nothing. I chose doing nothing as there are no guarantees that the surgery will prevent the same happening again down the line, and it seems like too much of a risk. I have been plagued since that appointment with both sadness and guilt, especially when the pain is bad, that I have chosen this for him. Thankfully Dominic is far wiser than I am, and sees the pain as a mere inconvenience in his otherwise happy life.
The post that we have received has, undoubtedly, been the highlight of the children’s day. We have been making an effort to reply to people, but do forgive us if we don’t always manage it. I was delighted to be able to track down one of the people who sent us things on twitter so we could say thank you, she (Kay) in turn told me about her penguin amnesty for Post Pals http://brinkofbedlam.co.uk/2012/06/12/im-having-a-penguin-amnesty/ and I have to say I was moved beyond words that people would make such an effort for children that they had never met. So thank you, once again, for reminding me that no matter how terrible things can seem, there are always smiles to be found.
Update 5th November 2012
Things have been hectic in our house recently. This time of year we celebrate not one, not two, but three birthdays, so I am now the proud mother of a 6 year old, an 8 year old and a 10 year old, eek! Dominic wasn’t really well enough to do much on his actual birthday (see my blog for a photo-video of some of the surprises he did get) but he did manage to go to the cinema to see Madagascar 3 with a friend from school as a ‘party’ of sorts a full month after his actual birthday. He is of course now mad on Madagascar as he enjoyed the film so much. Lilia had her party on Halloween, so the house was filled with little witches and I took them all trick or treating, which was wet, but good fun. A big thumbs up for all the Halloween project bits we received which took pride of place at Lilia’s party. Dominic joined in too (dressed as a vampire, so not too much make up was required as he is generally ghostly white anyway) and loved asking ‘trick or treat?’ even though he’s not currently allowed to taste any food at all. Elliot sensibly escaped to a boys party for the night.
Dominic has had a short respite from the horrible abdominal pains he’s been having, although, unfortunately they have recently returned. He’ll be having an MRI of his abdomen next week, and although I don’t think anyone is expecting to find the cause that easily, this is Dominic after all! He’ll have to be extraordinarily brave as they are going to do it awake with no sedative (it’s the safest option for him) and it’s going to be a long procedure (over an hour without being able to move even a tiny bit). Can’t say I’m looking forward to that appointment!
He also has lots of other appointments coming up, and hopefully I’ll get some help finding a way to seat him more comfortably (his bum is so skinny at the moment he’s getting sore just from sitting on the sofa and has to be on memory foam at all times) and getting him having tastes of food again.
Thanks, as always, to everyone who takes the time to contact us, especially those who sent birthday cards and presents to the children and made them feel really special. Extra special thanks go to Leona and Kati Koskinen for managing to make everyone feel thought of.
Update 28th September 2012
After having had a really positive first year in school, unfortunately in the months leading up to the summer holidays Dominic noticeably deteriorated. He started having crippling abdominal pain and slowly our lives started becoming dictated by his health again. We had various visits to the surgeons over the months and I tried everything to avoid Dominic having to have yet more abdominal surgery, however as the school year came to an end we were pretty much trapped in the house, as moving Dominic anywhere caused him so much pain. The surgeon and I agreed that holding off was no longer the right thing to do and we cut our holiday short and took him to Great Ormond street for exploratory surgery. They found a big loop of bowel that was stuck to both sides of his abdomen which fit all his symptoms. They took it down and repaired the bowel and everyone was exceedingly hopeful about the future. The gastro team had taken the opportunity to take a look at his large bowel while he was under anaesthetic. Unfortunately they found that it was inflamed and it explained some of the bleeding that he’d had. As a result all the tastes of food that he loved (with an obsession that would put any food lover to shame) have had to stop. Dominic obsessed about the times in the day that he was allowed to lick a lolly and this is a hugely upsetting thing to happen. He has been amazing about it though, only crying once at the thought of people eating his birthday cake when he couldn’t even taste it.
He remains philosophical about it all with wisdom well beyond his (almost 6) years and I’m in awe of his coping skills. Unfortunately, it’s not just the not eating that he’s currently coping with…
It very quickly became apparent that there was still something wrong a few days after the surgery. He started looking very unwell and screaming in pain. A week or so later with no one knowing what to do and no sign of improvement, I made the decision to bring him home, hoping that time and the distraction of family life would help. As things stand he is spending a lot of his life on the sofa, under a blanket. His pain is intermittent and helped a lot by the strong painkillers he came home with. I’m trying to get him into school as often as possible and home schooling him when he’s just not well enough. Both of us are exhausted as he is generally very unsettled during the night, but he is undoubtedly better in his own house rather than living on a ward for months while they try and figure out what to do next.
We are currently waiting for an MRI to give the doctors more of a clue about what is going on and trying to focus on his birthday on Sunday. We’re not sure yet if he’ll manage to do anything for his birthday as he might not be up to it, but it will be an Avengers themed day, and we’ll try our best to bring the party to him if he can’t go out anywhere.
All the post that we have received has undoubtedly carried us through the difficult last few months. Lilia has produced some beautiful pictures and crafts thanks to some of the lovely activities that have been sent, Elliot has done some gross magic tricks for us thanks to a gift and Dominic has been delighted by the fabulous postcards and gifts that arrive. Elliot and Lilia appreciate the letters addressed to them so much, even if they don’t always manage to write back, the anticipation and delight when the post comes lifts the mood for the rest of the day.
It’s a busy birthday month coming up with Dominic’s birthday at the end of September and Elliot’s and then Lilia’s in October. I’ll do everything I can to try and make sure their birthdays and (hopefully) birthday parties are unaffected by current circumstances. Thank you in advance to everyone who takes the time to send birthday cards.
Just as a little aside, with Halloween coming up especially, please, please don’t send Dominic any food related things, he’s being so brave about it, I’d hate to see him disappointed however wonderful the intention. Also Elliot and Lilia are both vegetarian and so all sweets with gelatine in they can’t eat (for example chewy sweets like Haribo anything with marshmallows in it etc). Lilia wants to have her party on Halloween, so this year we’re trying to make it extra fun. She is going to be a gothic bride, Elliot is going to be a ghostly escaped convict and with Dominic I thought we’d put his deathly pallor to good use and dress him up as a vampire.
Once life gives me a chance I hope to go back to updating my blog regularly, so if you enjoy following what we’re up to come and say hello, I love hearing from post pals friends.
Thank you once again from all of us, to all of you wonderful people out there.
Update 8th April 2012
Thank goodness for school holidays! All the children have been exhausted so the Easter break has been much anticipated, although we’re all disappointed that the weather didn’t hold out. For the first time, and only thanks to a friend of mine, I have managed to find an Easter activity that Dominic can join in too. He and Elliot and Lilia joined an inclusive theatre group for the morning which was fabulous (even if I had to stay to do all of Dominic’s medical care).
Talking of medical care, Dominic has been back in hospital briefly for testing, although after being starved and stabbed they didn’t have enough nurses to complete the test (he would have had to have a one to one nurse to be safe while they were completing it), so we’ll be going back in again next month which is a pain. Other than that we have a very important appointment coming up where we’ll be finding out some important test results. I post regularly on my blog with pictures and videos of the children so do stop by and say hello.
We have been getting some fabulous letters and the children (even my writing phobic oldest) have been replying to a few of them when they are able. Thank you as always for taking the time to make them smile.
Update 27th March 2012
It has been a while since I updated the actual Post Pals site rather than just the blog, for which I apologise.
All the children are doing well in their own ways. There have been a lot of appointments for all three of them, and I hope you’ll forgive my reticence in going into any more details for now until we actually know what is going on.
Dominic has amazed everyone with how well he is doing in school, and has caught up with his peers with everything except writing which is still difficult for him because of the weakness in his hands. He even managed to complete the sport relief mile with his class in his power chair. It took him a long time, but his class cheered him round which was testament to how accepted he is.
He’s been unwell recently and is going into Great Ormond Street briefly again in a couple of days. Life is undeniably exhausting for him, but he copes amazingly. I’m trying to give Elliot and Lilia as normal a life as possible, but trying to juggle everything is interesting to say the least. We are still waiting for the house adaptations to go ahead (goodness knows how many years it’s been now), but we are at least at the point of having a builder picked out. At the moment Dominic is pretty much stuck in one room unless I carry him, so both he, and my poor shoulder, are hoping that it might happen this year (although I was promised it would be finished by last Christmas at the very latest, so I’m not holding my breath).
We still haven’t managed to sort out any suitable supportive chair for the long days at school, and so the general consensus is that he should be in a power chair rather than a manual wheelchair at school. This seems like a huge backwards step and it’s taking me a long time to come to terms with it, but everyone is worried about his spine so I guess it’s unavoidable.
That’s it for now. Sorry about the patchy and slightly vague update, I will post fully when I know, and have come to terms with, whatever is going on with all three of them.
Thanks for the lovely letters and gifts that continue to arrive for the children. I hope you have been catching my thank yous on Post Pals Facebook page, which is where I generally post them.
Update 2nd November 2011
Huge thanks to everyone who has continued to send post despite my prolonged silence. The lack of communication has, in some ways, been for wonderful reasons. This summer is the first one that Dominic and I have managed to not be in hospital, so we made good use of it and went away with everyone first to a children’s music festival, and then to France for a week. Our trip to France was more wonderful than I could have imagined and I think of it very fondly. I couldn’t get any reception on my phone when I was there, which meant no one was hassling us and we actually got to be a family, just us, enjoying each other’s company.
It was fabulous for all the children of course, such a novelty doing things that regular families do. It took a ridiculous amount of planning and packing, but it was so worth it, and gave Dominic, especially, a real sense of family and security before he embarked on a huge milestone for all of us… starting school! He’s at the same school as Elliot and Lilia who are so proud to be seen with him in the playground. At the moment he’s a bit of a celebrity and is causing disruption every assembly when everyone wants to say goodbye to him when they’re meant to be lined up quietly, but I’m sure he’ll become a regular school boy soon enough. At first he found it very difficult to cope with the attention, but thanks to the weeks and weeks of preparation before school broke up for the summer, he seems to have settled in far better than anyone thought possible and, despite his protests otherwise, is actually really enjoying himself. He’s really, really exhausted by the end of the week which causes a few blips in his ability to cope with things, but, with the exception of hospital visits and illness, he is managing full days 5 days a week, which is testament to what a superstar he is. I recently started leaving him with his one-to-ones at the school, which again he, and they, are coping with very well.
I of course miss him like crazy, but I’m so busy that the day flies and I haven’t even made a dent in the towering pile of papers that have been put on hold for so long. In many ways things have been wonderful and the children have been more settled and happy than they have been for a long time.
Health wise Dominic has been relatively stable. I can do most things that he needs at home, so we have avoided hospital as far as possible. He has been having some pains in his legs which have been difficult to cope with as we have no idea what is causing it, and his same stomach problems persist, made worse by the school bugs that are of course flying around.
However, there have been a few reasons for my prolonged absence, so forgive me if I fall silent again, I don’t intend to, but sometimes hiding away is just the only way to stay sane.
Also, and this is rather harder to talk about as I’m still trying to work out what it means for us as a family, Lilia has been diagnosed with the same condition as Dominic… whatever that condition is. It obviously means that we have no idea of the implications at the moment; we just know that she has the same problems as he does with his muscles, they are just milder. They are currently getting Elliot referred to the same neuromuscular team. This could be devastating or relatively insignificant, no one really knows, but it does make the lack of a diagnosis slightly harder to bear.
Thank you to everyone who continues to write, especially Leona who writes regularly to Lilia and is much talked about and loved within our family despite our never having met. The arrival of the letters is such an anticipated event, and brings so much happiness. I know Elliot would appreciate some post of his own if anyone knows any good jokes, interesting (but appropriate) websites or fascinating facts. We keep every letter, and really appreciate all the thought and work that goes into them. There are some amazingly talented card makers out there! Thank you all for still thinking of us.
Update 29th June 2011
Dominic, in many ways, has amazed us all. He’s been going to Nursery pretty regularly and is learning to trust the staff. Trusting adults is a difficult one for Dominic still, he’s had the rug pulled a few times when people come into his life, then, for reasons only known to them, decide to remove themselves from it. It chips away at any feeling of security that we’ve gained since his discharge, and has a knock on effect on his pica which is so dangerous I have to be so, so careful not to leave him unsupervised.
He missed all of the other Nursery rites of passage such as the Nativity play, so I’m going to do everything that I can to make sure he makes it to the sports day. Having a slightly funky body doesn’t stop him being just as competitive as the other children, so I hope his one to one wears her running shoes as he wants the wheelchair crossing the line first. At least it will be the waggling happy feet that actually cross the line before anything, which is as good as running feet really.
Medically he’s been about as stable as I can manage. I’ve only had a few heart stopping moments this month, so it counts as a good month in our household. The hotter weather is starting to take its toll though and I’m going to have to watch him very carefully. Energy wise he’s really struggling. Nursery is hard work and he has very little left at the end of the day, and I don’t think the heat will help that much.
We have had yet more diagnoses added recently, with problems with his hips and bones being identified. I’ll find out more about that at the end of the month when we see the orthopaedic surgeon (yet another consultant added to our long list) for the first time.
We’re also going to Oxford to see the Congenital Myasthenia experts. We know that there is something wrong with Dominic’s neuromuscular junction (the bit between the nerves and the muscles) but he doesn’t fit the classic myasthenic types, so the team are going to give him the once over to see if they are willing to give him a CMS diagnosis, but with an unknown gene fault. It’s a very new and emerging field so I’m really interested to hear what they have to say.
Elliot is doing fantastically. His teacher said he’s been like a completely different child since I got home, he concentrating more, finishing his work and excelling in all his tests. Most notably they score the children’s views of themselves and their own abilities in the school as part of their assessment process. When I was in hospital with Dominic he pretty much said he was rubbish at everything. He gave the answers of a very unhappy child with very low self esteem, and this child top set for everything. He was recently reassessed, and finally talked about himself in a more positive light, even identifying strengths that he saw in himself. I’ve never been prouder.
Lilia is still her happy go lucky self, although a really defiant streak seems to have reared its head since I’ve been in hospital. I guess it’s that defiance that has been what has brought her through it all so well adjusted though, and with an emotional intelligence that belies her young age. She is having some worrying issues of her own that have prompted me to see medical advice. Lilia will be seen by Dominic’s neuromuscular consultant to properly investigate, so watch this space.
And to finish on a really positive note, we finally got planning permission to adapt the house so Dominic can have a downstairs bedroom and access the rest of the downstairs. At the moment he is unable to use the wheelchair in the house so he is confined to wherever he is put down, which must be hugely frustrating for him. He’s very patient with me when I say ‘in a minute’ for the hundredth time though. It’s been years and years of fighting to get to this point, so I’m happy, to the point of tearfulness, that the fight is almost over.
And to all our Post Pals family, thank you. You are part of our every day conversations, our regular writers are like welcoming old friends into our house to share little snippets of their lives or just to say hello, and we always love hearing from someone new.
We had the great privilege of meeting some of the people behind the computers at the Post Pals party recently. Lots of thanks and love to you all as well, you help make our lives immeasurably happier.
We received some brilliant letters and cards this month that Dominic had me read out to him, including some from a school in Switzerland. They were very much appreciated, especially the tremendous drawing of batman. The circus themed gifts were such good fun as well, so very generous and very well thought out. The kids had a lot of fun opening them and it’s kept them busy, which I’m thankful for!
Update 15th May 2011
Thank you from Elliot, Lilia and Dominic, for the lovely Easter goodies. They were utterly delighted. And some of the cards that we’ve received recently are amazing, so beautifully made. Thank you all.
Update 6th April 2011
Well March finally brought us what we had stopped believing would ever happen over the 8 long months that we were in hospital… Dominic was discharged and we finally came home.
It is unfortunate though that bed management got in the way of a proper discharge, despite months of begging to ensure that it didn’t happen, and then once we got home and the problems started arising, the lines of communication slammed shut, despite promises that they wouldn’t. So all in all his first few weeks at home have been unnecessarily frustrating, stressful and upsetting. I have somehow managed to keep him well hydrated; thank goodness his body is tolerating the haphazard approach to his medical care that I am having to fit into being a Mummy to three again. He is in a lot of pain though and it makes me so tearfully frustrated that not only was I forced into coming up with a solution to get him home with very little help, we then got caught up in hospital politics which destroyed both Dominic’s and my trust in anyone and have left us pretty much alone as the community team won’t do anything without the specialists say-so.
Thank goodness the community nurses are doing everything within their power to help and so I get the blood and urine results the day that they are taken and then attempt to get someone to listen if there seems to be a problem. At least it’s a good guess that people are reading the emails I’ve sent even if they are not replying as I’ve something that I’ve flagged up as a problem told to me on the phone a couple of days later by a different person.
To try and be slightly more positive, I have started taking Dominic to Nursery to try and get him used to a ‘normal’ life. He is doing his very best, but pain and anxiety get the better of him a lot of the time. It is so good to be home though, for both of us, and I’ve certainly settled in so much faster than I thought I would.
Elliot and Lilia don’t seem to have suffered too badly from having me back (we occasionally get homework done before its due in) and the doggies are content to have someone to potter around after in the afternoons. All our frustrations with the lack of medical care aside, life on the outside is immeasurably better than it ever was stuck in a room for 8 months and I’ve started to feel vaguely human, even if I do still feel strangely disconnected from my ‘former’ life.
Thankfully for us breakable adults, children are remarkably resilient, and I’m holding onto the fact that I have seen glimmers of the old Dominic seeping through, so hopefully, pain aside, the same cocky, smart, eccentric little boy will win out and the damage done will become a bad memory.
Thanks as always to the people who continue to think of us and write the most wonderful letters and make the most beautiful cards.
Update 17th January 2011
I’m very sorry for taking so long to update everyone on Dominic. Things have been difficult over the last couple of months and I am emotionally and physically exhausted.
Dominic, unfortunately, is still in hospital. We got to spend a miserable Christmas day at the mercy of the hospital canteen as he was having antibiotics for a central line infection which prevented us from escaping, which kind of set the tone for the start of the New Year. The good news is that he is well in himself for the most part; the bad news is that there is no talk of home yet. He is still losing too much fluid from his stomach (which isn’t working very well) to stay hydrated without IVs.
We have also fallen prey to the unstoppable machine that is hospital management. As a result life has become considerably more difficult and may have long lasting consequences for us when we do eventually get home. Obviously I can’t go into details, but I am trying to summon the energy for a fight that may involve starting a complex complaint process. It’s the last thing we need, especially as the decisions management have made are directly affecting his day to day care.
On a happier note, we were overwhelmed with the generosity of all the people who contacted us over Christmas. Thank you so much to everyone who took the time to write and send things and I’m so sorry to not be thanking everyone personally. Post Pals is a well known name on Dominic’s hospital ward now, as the staff love to see his arms and legs waggling as the post arrives. It really breaks up the day for us as he gets so excited. Elliot and Lilia open their post on the phone to me in the evening, and even though they don’t waggle quite as much, they are still so excited to see who it is from.
Hopefully there will be a happier update soon.
Update 7th November 2010
Dominic will be having yet another operation. At the moment it is looking like it will be this coming Tuesday. It’s going to be a very big and complex bowel operation and the resulting recovery time is likely to extend our stay even longer (probably through Christmas and into the New Year). The whole ward is also about to move for renovations so we will be stuck with no playroom and nowhere to store toys. Dominic is also not allowed into the activity centre so will be confined to his room. It’s obviously going to be a very, very difficult few months for everyone and any smiles will be enormously appreciated.
Update 30th October 2010
I’m very sad to say that Dominic and I are still in hospital and all plans to be home for Elliot and Lilia’s birthdays had to be abandoned as he got a line infection and his levels of pain are increasing.
We did manage to celebrate both birthdays in style though. For Elliot, with the help of all painkillers available to us, we managed to take them all to the London Eye and then to the Hard Rock Cafe before flying back to the hospital. Elliot’s day had a memorable end with a visit from London Fire Brigade after the sparklers on his cake set off the hospital’s smoke detectors. They were good humoured enough to let him have his photo taken with them, and the nurses were of course delighted to welcome them onto the ward.
Lilia’s one wish for her birthday was to have me home. Despite the consultant scaring the heebie jeebies out of me about how ill he thought Dominic was, I managed to force my legs to take me out of the hospital and onto the train. So I left Dominic in very good hands and went home for the night. Lilia didn’t sleep *at all* she was so excited to have me home. I managed to get the children off school for the day and after lots of present opening came and continued the party at the hospital with Dominic.
As for when we get to go home for good, it’s a very difficult question to answer. At the moment they are proposing another procedure (endoscopy and colonoscopy) and then probably another operation. I am terrified this won’t work as they still don’t know what is going on and why he is in such a lot of pain so often.
As always the kindness of strangers has made an unbearable situation more bearable. So many smiles have come through the post. I apologise enormously for not having replied to people, things have been rather difficult of late and I have spent little time doing anything other than focusing on the children. I really wish I could capture the joy they have when something arrives for them. Thank you, thank you, thank you… the nurses are so taken with how happy it makes Dominic that a few of them are signing up groups that they run, so the smiles will be passed on.
Update 4th October 2010
It has been a very, very difficult month, with Dominic missing the start of nursery and then starting to get excruciating pain, which he had to endure for 3 weeks until he eventually went on the emergency operating list just before his 4th birthday. When they operated they found a part of his bowel that they thought was twisting and sewed it in place. Unfortunately he has continued to be unwell, with us only seeing glimpses of my happy, foot waggling boy in-between the tired, grumpy, sweaty boy that has replaced him. He is also still getting the pains intermittently. Currently the feeds that he normally has in his jejunum have been stopped as he was losing too much bile and artificial feeding has been started (TPN). He was unwell and unhappy for a lot of his birthday despite our best efforts, so we will try again when he (eventually) gets home.
Each and every letter and card and gift have been cherished during the 11 or so weeks since we’ve been in hospital. Sometimes they really are the only time he is truly happy all day, and for that I thank each and every person who has taken the time to get in touch.
It is Elliot and Lilia’s birthdays in a couple of weeks and I would be enormously grateful for any smiles that can be sent their way.
An enormous list of thank you’s, as always. Julia and Roger, thank you for the Mr Happy card, very cheery; Isaac, Dominic had no idea it was a cricket bat (he thought it was a paddle for a boat) but I explained all about cricket and he’s better informed now! Dottie Dalmatian thank you so much for your brilliant letters and of course for sending Indy to us. Donna thank you for the great bracelets; Anne Calico the pig postcard was great fun thanks for thinking of us and Dominic adores the Buzz blanket and is sleeping with it every evening; Vicky Shepherd, once again thank you for the Toy Story things and the card which were very gratefully received; Kaden thanks for the great card. Babuka Aliex thank you for the get well soon card; Sarah Gilligan, we loved the rose postcard and really enjoyed the letter and thank you card; Rachel and Adam, once again thank you for thinking of us, the meercat card is up on the wall and the Toy Story drawing pad and card were wonderful. Sheelagh Hawkins, we all love the doorbells, the nurses think it’s especially funny as Dominic insists that they have to ring it to come into his room. Whoever sent the Sing along Mickey CD, thank you, the play specialist had a great time revisiting her childhood with it! Alison, thank you for the postcards; Ruby your handmade birthday card was beautiful, thank you. Jack, Dominic loves the Toy Story phone and stickers and phones Mr Tumble on it all the time! Georgina, thanks so much for the bubbles, playing cards and art set, and of course for the card. Maggie, thanks once again for sending us things from Oz; Kate Dee, thank you for the beautiful card you made him, he saw the boy in the bear suit and said ‘that’s me!’. Sophie P the Duplo was a wonderful gift to receive and he’s spent hours playing with it; Karen Isabell thank you for the pencil case and bag, both are being put to very good use and of course the art case and the Woody keyring, which of course he loves. Maggie (and Damson) thank you for the pirate card and of course the photo of Damson. Kate Thompson and family, thanks for everything, including the heart from Kitty and the book. Kate Ware, loved the elephant book, it got a big thumbs up from Dominic. Mandie, Lilia was so thrilled with her Hannah Montana things, and Elliot with his Ben 10 book, thank you. Naomi the Cars colouring book was great; I’ve never seen anything like it before. Jenny Rust thank you for the sticker book and animals and Carol Moore he loved the sticker scenes; Margret Nagy thanks for all the children’s cards. Wendy thanks for his teddy birthday card and letter; Nicky Pitman thank you for the great hammer picture maker, the spiderman stickers and Belle’s lovely rainbow. Leona thank you for Dominic’s Buzz blaster birthday present, which of course he loves. Ian, Nikki, Lennon and Isla, thank you for Dominic’s card, Toy Story characters and of course the lollipops! Penny Berrill thank you for the reusable stickers and your lovely letter. Becci, Mackenzie and Blake, thanks for thinking of Dominic as always and for the Toy Story bits. Mandie, the paper was amazing, and he loved the card, flannel and puzzle, I was very impressed with your Disney writing. Wiggly bags, thank you so much for the great bags for his line. Hayley (in case you’re reading this), thank you for the lovely t shirt and for frequently cheering him up when everything I have tried has failed. And of course Viks for the giggly toy, beautiful handmade card and most amazing huge birthday card which we have managed to stick on the wall with all the others (and of course for Post Pals).
If I have missed anyone I do apologise, sometimes it is hard to keep track of what the children are opening at home.
Update 25th September 2010
The surgery got cancelled at the last minute yesterday as a critically ill baby needed the theatre slot. He’s on the list for Monday unless he deteriorates more this weekend. Monday is going to be another very long day waiting to find out when he’s going down.
Update 23rd September 2010
Dominic is on the emergency surgical list for tomorrow afternoon. It’s another big operation to try and correct what they think is an intermittently twisting bowel which is excruciatingly painful for him. He’s already been in GOSH for nearly 10 weeks and it is likely to extend his stay even further. Added to this, it is his 4th birthday in a week and Elliot and Lilia’s mid October. They could all do with as much cheering up as possible. It’s come as a real blow to everyone.
Update 24th August 2010
So, Dominic has turned this into a bit of a hospital marathon, and we are really all scratching our heads. The issue is simply that he can’t stay hydrated. He’s had a new feeding tube placed in his bowel but it’s making bile pour out of his stomach. So much so we can’t get enough feed into him to stop him getting really dry so we’re stuck in hospital. No one has had any bright ideas yet and time doesn’t seem to be helping, so at the moment there is no end in sight. Things have been very difficult and seem more so now as it seems like we really have run out of ideas. Dominic is due to start his new school in a couple of weeks and so much preparation has been done to make sure he can start with everyone else. At the moment that’s looking increasingly unlikely. It’s not been helped by the ward deciding to put an infection status on Dominic, not because he has one, but because he had one at the beginning of 2009 and their protocol states that it cannot be removed until he has no ‘indwelling’ devices. Unfortunately his feeding tubes are precisely that and they are long term, so the play room and activity centre are now out of bounds which makes for incredibly long days with a little boy that doesn’t understand and two very bored siblings. Elliot and Lilia have really been struggling. They’ve been spending long days on the ward with very little sleep which has taken its toll on all of us. I wish I could organize some distractions for them, but it’s just so difficult as finding someone to take them so early in the morning until so late at night is so difficult and so much to ask someone else to do. Elliot has been waking up sobbing in the night apparently, and Lilia just clings to me and cries when it’s time to go. It breaks my heart.
Thank you so much to everyone writing to us. We do try and send thank you’s when we get addresses to write back to. Apologies if we miss anyone out, each and every gift, letter and card is very much appreciated.
So many people to thank and apologies to anyone I have missed… Becky thank you for the cards and the lovely hand drawn pictures. To Leona – Lilia loves your letters, if you let us have your address we’ll write back. To Rachel, thanks for your letter to Lilia. Karen thanks for the brilliant Buzz keyring and the letter. Ellie thanks for the colouring books and Elliot’s book. Alison – Dominic loved the tissues and the colouring book. Jane, thanks for the colouring book with Darth Vader in! Craig thanks for the card and pictures. Natalie, Cerys, Kaitlyn and Shannon, I wish we had your address so we could have written a thank you letter, especially for the chocolate! Sarah – you’re a star, such generosity, everything was perfect and there were squeals of delight. Rachel and Adam, your hand made Dominic laugh out loud and thanks for the flying fairies and dinosaurs, we flew them up and down the corridors. Anne, your paintings are just so beautiful and are hanging in our art gallery wall in his hospital room. Amethyst and Breeze, cool light sabre thanks, he’s given it to his pig toy to fight with at the moment. Rex the dinosaur – thanks for writing on behalf of the gang. Thank you to whoever sent the Toy Story sign for Dominic’s bed. Penny, many thanks for the pig, the jumper is proving popular for putting mini toys up so piggy can pull them out to scare the doctors. Lennon, thanks for the brilliant masks and the soft Buzz. He’s currently sitting next to Woody wearing sunglasses. Teresa, thank you for Lilia’s card and the sponge painting set. Becci, Mackenzie and Blake, thanks for the activity books and sweets. Finally, Viks, thanks for Elliot’s Dr Who ship.
Update 30th July 2010
Dominic’s operation went ahead as planned on 19th July. It’s been a long haul but I’ve finally got to the point where I’m not sitting by his bed worrying about what he’s going to challenge the doctors with next and I can start thinking about possibly taking him home sometime soon. As always, we are struggling to get his body to accept being fed, and so as predicted the kids lost out on going on the holiday that we had all been so excited about for so long. I also got to spend the fourth year in a row celebrating my birthday in GOSH, fun! He’s regressed hugely in his gross motor skills and is struggling to sit which is concerning, but I’m delighted that he is not retreating completely into his shell (well not in hospital as the nurses and doctors know to talk to him about Star Wars), but he has just hidden behind my hand on the two occasions we’ve been able to leave his room.
He’s also undergoing lots of tests while he is here to try get to the bottom of what is going on in his little body. And it is a little body – he’s the size of a one year old – which turns out to be due to the fact that he doesn’t produce enough growth hormone. So we’re probably adding in a nasty injection to his ever growing list of medications. Not looking forward to having to give that one.
Dominic has received some truly lovely post whilst he’s been in hospital and we’ve tried to reply to everyone who has included an address or email. Apologies if we’ve failed, but sometimes in all the excitement addresses might get lost, or the kids will open them when I’m not there. But thank you to everyone who has made Dominic, Elliot and Lilia smile when they are really struggling to find things to smile about.
Update 9th July 2010
Dominic’s big bowel operation has been brought right forwards. He’s now having it on 19th July. It probably means missing our mini holiday to Camp Bestival (he’s a big Mr Tumble fan and was desperate to see him and it’s all he’s talked about for months). It’s come as a real shock. I haven’t even attempted to break the news to his brother and sister who will fall apart too.
Update 8th July 2010
June has been a difficult month for Dominic. His health has been stable enough, despite a bout of chicken pox and his jejunal feeding tube coming out (which causes great panic around here as he has blood sugar problems so it means a mad dash to hospital). He has, however, had a lot of stays in hospital as the doctors try to understand what it is that isn’t working properly in Dominic’s body. His anxiety levels have risen with each stay and he is now terrified about the next one which is happening next week. Elliot and Lilia have been picking up on this anxiety and have been worrying in their own quiet ways as well. Hospitals mean losing mummy and worrying about their little brother and it puts a lot of strain on them.
Dominic doesn’t cope with change very well and his world has been thrown into turmoil by the loss of his beloved one to one carer at pre-school. Unfortunately, the pre-school didn’t manage the situation at all well, despite having months and months to prepare for it and Dominic is a shadow of the boy he was. He’s tearful and clingy and won’t speak to or look at anyone except those closest to him. It will take a long time to rebuild his confidence as his safe secure world has been turned upside down with no forewarning or preparation. Currently, I can’t even start rebuilding his security with all the hospital stays unsettling him.
He is also facing a big bowel operation. Some problems were found when his feeding tube was being replaced. It’s a very daunting prospect as his bowel doesn’t recover well from operations and there is always the risk that it wouldn’t recover at all. We’re awaiting a consultation with his surgeons and will go from there.
On a more positive note, his new manual wheelchair has arrived and is a huge success. The wheelchair service couldn’t offer anything suitable so I self funded a lightweight chair. It was worth every penny. For the last 4 years he has been completely reliant on adults to help him move. Now, suddenly he wants to be mobile. He’s learnt to change a Wii game and to come and find me to see what I’m doing. It takes my breath away every time I turn around and he’s there… it’s been a long time coming and I’m enormously proud of him.
A big thank you to everyone who has sent things. We have received some wonderfully thoughtful gifts and some brilliant letters and cards. I wish you could all see how excited he gets when it arrives. There is lots of arm flapping and leg waggling in anticipation going on! Enormous thanks to everyone who has sent things to Dominic. He’s going through a very difficult time at the moment and is very sad and anxious so every time something arrives it really is the highlight of his day.