Story written 2012
Sophie lives with an undiagnosed condition that has made her muscles extremely weak. Because of this she has profound hypotonia which means she is very floppy. She has a tracheostomy and is permanently connected to a ventilator to help her breathe. She cannot swallow and therefore is fed through a tube directly into her tummy. Her muscles are so weak that she cannot sit, crawl, walk, talk or even support her head. She is however, the brightest and most fun loving little girl that you could ever wish to meet!
Sophie developed completely normally until around three months of age when she began to squeak when she breathed (stridor) and struggled to feed – she would suck and suck on a bottle but the milk would not go down. The local GP concluded she had a virus three times before finally admitting her to hospital where she quickly became very floppy. Sophie was then transferred to St Georges Hospital where she underwent a whole array of tests. We were then transferred back to our local hospital and discharged home.
Just a few days before Christmas 2007 when Sophie was just 6 months old, Sophie suffered a respiratory – cardio arrest in our local hospital and was transferred back to St Georges on a ventilator, but this time onto the children’s intensive care unit. Sadly doctors were unable to wean Sophie off the ventilator. As we still didn’t know what was wrong with Sophie (and it was felt at the time that she could still potentially have a treatable disease) we decided that a tracheostomy was the best course of action. This was carried out but shortly after the operation, whilst trying to wean her off the ventilator, Sophie’s lung collapsed and it was decided she should remain fully ventilator dependent. It was then that Doctors told us Sophie would probably not survive to see her 1st birthday, so we were sent to our local hospice for transitional care of a palliative child.
Sophie decided to prove all the doctors wrong! Despite her problems, she is now 4 years old and a bright, alert and sociable little girl who develops in her own way each week. She goes to school every morning with her own carer and her teacher is very impressed with how intelligent she is. She especially loves characters and having stories read to her.
Sophie loves living life to the full, we take her shopping, on holiday and even take her swimming (something the doctors said would never happen). We try to make the most of everyday with her as we still don’t know what is wrong or how long she will be with us for.
What we do know is that she is a very special and amazing little girl!
Update 28th January 2016
I have some positive news regarding Sophie’s health since my update last May. The chronic wound resulting from her gastrostomy (feeding tube that goes into her tummy) surgeries has now all healed and Sophie has been able to return to school and get back to her ‘normal’. It has taken many months for this healing to take place and we hope that this marks the end of a difficult time.
Sophie needed to spend a couple of weeks in hospital over summer so she could be switched over to a more modern ventilator. Whilst this was a long process, the result was beneficial to Sophie as she appears to be more comfortable and is tolerating the new machine well.
Sophie is going to need treatment in hospital this year for ongoing dental problems. This treatment will be surgical in nature and this will always be risky for her. I will endeavour to keep you updated on when this will be.
Sophie was so happy to return to school after all her surgeries and time off. She absolutely adores going to see her friends and has a real love for learning. She enjoyed a few school trips around Christmas to see Father Christmas and his reindeers, and it was lovely to see her play the part of a King in her school nativity.
Sophie has been having fun at home too. We have been able to arrange a few play dates at home with her school friends which she has loved; especially the one where Father Christmas came to visit her and her friends in her Summerhouse and it snowed (fake snow!).
Sophie continues to love dressing up with her dog Peppa. She has dressed up as lots of different characters recently including Mr Tumble (Peppa was Grandad Tumble); a Witch (Peppa was a pumpkin) at Halloween; Little Bo Peep (Peppa was a sheep) and Angelina the Ballerina (Peppa was a ballerina too).
Sophie has developed a real love for going to the theatre. She went to see the Cinderella Pantomime at Christmas, a Milkshake show (which she went to dressed up as Noddy and was lucky enough to meet him and Tessie Bear before the show), Stickman and Ben & Holly.
Sophie has also developed a love for collecting little character figures and also loves ‘pretend play’ – we now regularly play ‘pretend’ cinemas, theatres and we even had a ‘pretend’ wedding to Dorothy the Dinosaur with a wedding cake and vows!
Sophie continues to love receiving all of her post. She gets very excited when her Nanny and Grandad arrive to give it all to her (it is delivered to their house). We sadly haven’t got round to thanking everybody this year but we would like everyone to know that everything is opened, looked at and loved. Thank you to everyone who has thought of Sophie and has sent something. Post Pals continues to help lift Sophie’s spirits and bring a smile.
Update 6th May 2015
It’s been a while since my last update, but so much has happened with Sophie who has had an incredibly difficult time. Since her gastrostomy (feeding tube that goes into her tummy) was incorrectly inserted last July, Sophie has had 4 hospital admissions, all requiring surgery. Unfortunately, the incorrectly placed gastrosotomy caused abscesses to form in her abdomen which needed surgical treatment and have gone on to reoccur twice. Sophie has been living with a large open wound in her tummy for many months now. All of the treatment and hospital admissions have been a lot for her to cope with (on top of already having to cope with a serious disease). We do hope that the treatment she is currently receiving will help her to heal and stay free of infection so she can get back to living a ‘normal’ life.
Sophie has missed a lot of school this year due to hospital admissions and recovery time spent at home. However, she has enjoyed a few weeks here and there. She loves going to school to see her friends (who are always over the moon to see her).
Sophie has a new hobby – dressing up! This has been a great distraction throughout difficult times this year. She now has a little whiteboard up in her bedroom which contains a list of characters she wants to dress up as. She cleverly eye points to characters in books she would like her and Peppa to dress up as next and then eye points to the white board for us to write them down! She has dressed up as lots of different characters including Bob the Builder, Postman Pat, Hello Kitty, Upsy Daisy and Noddy to name a few. She also likes dressing up as characters from fairy tales and films such as Little Red Riding Hood (Peppa was the Granny), Dorothy from the Wizard of Oz (Peppa as the Lion) and Frozen.
Sophie LOVES receiving all of her post – we sadly haven’t got round to thanking everybody this year but we would like everyone to know that everything we receive is opened, read and loved. Sophie’s post was delivered to hospital when she was there and it really helped to make her smile. Thank you to everyone who has thought of her and taken the time and effort to send something. Post Pals continues to help lift Sophie’s spirits in dark days and bring a smile on sunny days.
Update 14th November 2014
Sophie had surgery this morning and is now starting to recover in intensive care. She has slept most of today but is awake this evening watching DVDs. The surgery revealed that she actually had no feed but 2 abscesses in her abdomen, one of which was very large. These needed draining and so she now has 2 drains in her stomach and is going to be sore for a little while. IV antibiotics continue and we are hoping she continues on an upwards path.
Update 13th July 2014
Sophie is unable to swallow food or liquids, so she has had a feeding tube (called a gastrostomy button) in her tummy since she was about 7 months old. This tube is vital as Sophie receives all her nutrition through it.
This feeding tube needs to be changed by a community nurse every 6 months. Unfortunately, during a routine change last Wednesday something went wrong and the tube was accidentally inserted into the wrong place (ie. not in Sophie’s stomach). As we were unaware of this, we gave Sophie medicines, water and feed into an area in her abdomen which caused visible swelling and severe pain. We called Sophie’s community nurses and they came back to reinsert the button again but unfortunately it was still in the wrong place and so we decided to take her straight to hospital.
Our local hospital referred us to St Georges Hospital in Tooting where Sophie ended up being admitted to the Paediatric Intensive Care Unit for dehydration and infection. Sophie needed to have surgery to place the feeding tube back in the correct place in her stomach. She also needed IV fluids and 5 days of IV antibiotics as the liquid we gave went into her abdomen where it caused a severe infection.
All of this stress has put a huge strain on Sophie’s body, and has led to her having an energy crash causing vomiting and tiredness. She is now back home but needing lots of rest and TLC, as at the moment sitting up for a couple of hours tires her out. We are trying to build her fluids back up very slowly. The road to recovery is going to be long.
Sophie has had to cope with numerous blood tests, surgery, multiple IV lines and much more, but throughout all of this she has been extremely brave. In all honesty, I don’t think Sophie realises how brave she has been.
I’m going to frame this quote for her bedroom wall: “You’re braver than you believe, and stronger than you seem, and smarter than you think”. (Christopher Robin to Winnie the Pooh).
Update 31st May 2014
Apologies for not updating for the last few months but life has been pretty hectic.
Unfortunately, Sophie’s health has been very up and down over the last few months. She had a cold which took her ages to recover from and more worryingly, she was unwell over Easter with a metabolic crisis caused by a condition called ‘ketosis’. Ketosis occurs when the body starts to burn fat instead of glucose for energy. This is a major issue for Sophie as her problems are thought to stem from an inability to break down fats to produce energy. Sadly, when ketosis occurs Sophie is like a different child; she becomes listless, lethargic, very sick and has zero energy. During this time we put Sophie on an emergency feeding regimen to prevent her body breaking down fat stores for energy. The metabolic crisis usually passes after a few days but is a huge worry for us as it is serious. Sophie is going into hospital next week for a few days where she will undergo some tests to see how well her body is functioning and to see if the ketosis is having any long term affect on her.
In-between these bouts of illness, we have still had lots of happy times as we continue to make everyday count. Sophie continues to enjoy school, shopping trips, and spending time with her family and Peppa (her dog). Sophie has recently become particularly fond of Mister Maker and likes to choose things off the programme for us to make with her (however, they never end up looking as good as they do on the programme). Sophie also enjoys dressing up and she has recently dressed up as ‘Josie Jump’ (from Balamory) for book week at school and Doc McStuffins. Sophie continues to enjoy spending time with Peppa and she loves choosing treats for her at the shops and then giving them back home. Sophie also recently enjoyed a visit to a local farm where she loved watching a pig race (she loves pigs!).
Sophie has received some lovely cards and gifts over the last few months. We open and read every single card with her. Sophie always gets very excited by the arrival of Post Pals post and as we usually receive quite few cards at once, she loves choosing which order to open the cards and parcels in. Sophie has received some lovely cards with some beautiful artwork on, as well as a selection of Valentines cards including a very cute dog card from the Post Pals team. Sophie has also received lots of lovely gifts including heart stickers on Valentine’s day from Jenny, a sticker book from Kim and Stevie, a Marley DVD from Rissy and family (which Sophie loved watching), a dog beanie from the Post Pals team and a Doc McStuffins rainbow hair clip from Toni and Karen which she wears on her wheelchair belt every day.
All this lovely post continues to make Sophie smile, so I would like to say a huge thank you to everyone who takes the time and effort to send cards and gifts.
Update 6th February 2014
Well, it’s that time of year when illness is all around and unfortunately Sophie picked something up and has been poorly this week with what we think was a virus. A respiratory illness always means that Sophie is bed bound; this is because she needs to stay on her bedside ventilator as this gives her humidification which is needed to clear her chest (her mobile ventilator does not give her adequate humidification), so as you can imagine, at times like these Sophie gets very fed up. Sophie also needed oxygen and lots of chest physiotherapy to make her better. We tried to keep her entertained with DVDs, books, watching You Tube on her laptop and of course having cuddles with Peppa (her puppy). The good news is that Sophie is now on the mend and back at school.
Sophie continues to do well at school and is starting to use her Eye Gaze (communication device) more independently to interact with her school friends. She recently used it to tell a classmate to ‘take a rest’ when she was trying to watch a DVD as Sophie felt she was making too much noise. This is fantastic news as it gives us hope that one day we will be able to have a conversation with Sophie and she will be able to tell us what she is thinking. Sophie has also shown that she is really good at maths and so she has been joining the older children in her school for maths lessons. We are really proud of how much she is progressing at school.
Sophie recently enjoyed a sleepover with her cousin Chloe. Just like any 6 year old, Sophie loved the whole idea of a sleepover and got very excited that her cousin came round with her pyjamas and bedtime doll. The pair of them had great fun playing in bed together.
Sophie has received some lovely cards this month which really cheered her up when she was under the weather. It’s at times when Sophie is feeling unwell that receiving some post to brighten her day makes all the difference in helping to lift her spirits. She especially liked the ones she received with pictures of dogs on! Thank you to Toni and Karen for the Bob the Builder book and Hilary for the stickers. She also received a lovely laminated collage from ‘Cheerful Collages’ which featured pictures of all her favourite characters – she really enjoyed opening this and holding it.
Update 17th January 2014
It’s been a long while since I last updated for which I am very sorry. The best piece of news to tell you all is that Sophie has now got her own puppy! Last September we welcomed a 12 week old golden Labrador into our home and Sophie choose to call her Peppa (after Peppa Pig). Sophie loves having cuddles with her in bed and feeding her little treats and the pair of them are becoming the best of friends as the months pass.
Sophie has a very complex health condition that remains undiagnosed; not only is she is totally dependent on a ventilator to help her breathe 24/7, she also requires regular suctioning as she is unable to swallow and she is fed a liquid milk feed through a peg straight into her tummy. Despite all her problems, Sophie’s health has remained relatively stable over the last year (touching wood here). However, she did have a period of being unwell last summer when she had a nasty bug in her lungs; however, she managed to fight it off with a course of antibiotics and lots of chest physio.
Sophie turned 6 years old last June; this was an amazing milestone for a little girl not expected to reach her 1st birthday! Sophie enjoyed opening all her amazing cards from Post Pals and she also enjoyed a couple of special visits from Peppa Pig (with special thanks to Post Pals for the costume). Sophie also enjoyed a birthday party with all family and friends though unfortunately she was a little poorly at the time.
Sophie is absolutely loving school. She is doing really well in meeting all her learning targets. She is also doing very well on her eye gaze (a communication system that she is learning to control with her eye movements) and she seems to enjoy learning so much. She was also an beautiful Angel in her school production at Christmas.
Sophie loved everything about Christmas this year and looked forward to it so much that she started watching Christmas clips on You Tube from August onwards! She got to meet Father Christmas several times which she loved, as well as his reindeer, and she loved watching ‘The Snowman’ and ‘The Snowman and the Snowdog’ over and over again.
Sophie absolutely LOVES receiving her post and is always so excited when she comes home from school and spots cards and parcels on her bedroom shelf. Sophie enjoys holding the unopened presents and cards and sometimes she wants to hold onto a letter or a present all day before opening it (I think she likes the anticipation!). She got quite attached to a few of the cards sent by Post Pals this year that had dog pictures on them and she insisted on holding these every evening! We are so grateful to everyone who sends Sophie cards and presents; a lot of the cards are handmade and are just amazing – it always brings a smile to our faces knowing that there are people out there who are thinking of Sophie.