Our Pal - Seraphina I

Seraphina has a phobia of music boxes and similar sounding music
Story written 2010

Seraphina was born by emergency section at only 25 weeks gestation and weighing a mere 760g. She fought hard and after 4 and a half months in Special Care she came home. The stay was short lived however, as after only 3 days she suffered a massive aspiration and was rushed to Intensive Care with an aspiration Pneumonia. It was there she was diagnosed with chronic Gastro-oesophageal Reflux. She was put on medication and fed by NJ tube but this didn’t help and so she had a fundoplication operation and a tube inserted a few months later. It was also discovered she needed supplemental oxygen. Since then she has put on weight nicely and developmentally progressed well mentally, but a lot more slowly physically. She was diagnosed with Cerebral Palsy (spastic diplegic) just after she was one.

Things were fine until she was 18-21 months old when she stopped making progress and lost all her speech, she became withdrawn and avoided eye contact. She lost the ability to walk and then stand.

She was hospitalised for almost 3 months last November with a twisted bowel /bronchiolitis and Pneumonia. She ended up on a breathing machine over Christmas and New Year and once again we didn’t know if she would pull through. However, she surprised us, and after emergency bowel surgery and a period on TPN she was able to come home.

She is in and out of hospital quite a bit with chest infections and bowel problems which is something she finds really frightening and she is on lots of medication (currently about 25 doses a day).

Recently we have found the reason for Seraphina’s loss of skills. She has been diagnosed with Rett Syndrome – a horrible Genetic disorder which mainly affects girls. She cannot speak anymore but is beginning to communicate using eye-gaze and will let you know in no uncertain terms what she likes and dislikes. She also has a very infectious giggle and the most wonderful smile which lights up the room!

Update 23rd November 2022

Healthwise Seraphina is probably the most ‘unstable’ than she’s been for some time.
Back in May she had exploratory surgery/ biopsies done to try and find a cause for her pain. This revealed that dispute immunosuppressive treatment and steroids, Seraphina’s bowel was full of bleeding ulcers. Clearly her treatment had stopped working. She has climbed the scale of pain medication & is now on pain patches, morphine and gabapentin to try and keep her comfortable.
We also found out her scoliosis had progressed ( another source of pain).
She was put on more steroids both oral and IV. Unfortunately a side effect of this was spending the next 2.5 months on IV antibiotics due to back to back infections and see sawing blood sugar levels which required trips to hospital.
She’s also having investigations into her kidney function due to repeated Urine infections and it has been suggested that she may benefit from a permanent catheter.

We also have an appointment at the beginning of December with the surgeons to discuss complete removal of her bowel as it’s thought the disease load is too much for her body to cope with and contributing to us not being able to get on top of her inflammatory bowel disease and arthritis. Currently we are having more fluids IV as she’s not tolerating full feeds and have been having issues with low potassium levels due to increased output from her stoma/ stomach.


Today we found out that her IBD and Arthritis is affecting her eyes and is the cause of the redness/ soreness/ photophobia she’s been getting .
She was due to have more steroids today to try and reduce inflammation but frustratingly the doctors have discovered she has another infection so she can’t have the steroids, instead it’s more IV antibiotics which means that instead of going somewhere nice for her birthday she will be stuck on IV’s. I’m so sad for her right now as we were so hoping to celebrate her 16th Birthday doing nice things.

On a positive note her OT secured funding for a lovely electric reclining armchair which she has just had delivered and she calls it her ‘throne’… she says she’s a real Princess likes wearing tiaras/ crowns and thinks it’s funny when we call her ‘Your royal highness’ 😄

Seraphina now loves Encanto, collecting sparkly tiaras (she calls them princess crowns), the colour pink and hair accessories.

Thank you to everyone who has taken the time to send Seraphina post. It really does make a huge difference to her and it’s so lovely that she is being thought of. 

Update 30th March 2022

.Seraphina has had a bit of a tough time the last few months with infections & arthritis flares.
Her inflammatory bowel disease isn’t well controlled either. Initially her morphine dose was increased to help with pain control from this.

She had a review of her scoliosis which once again has progressed, however only slightly so once again it’s a waiting game to see what happens in the next few months as she gets closer to 16. The knock on effect of a worsened curve is that her jejunostomy now sits in a ‘dip’ due to the way she sits and is constantly leaking/sore & gets repeated infections which isn’t fun for Seraphina. We do have dressings and cream to help with this. She also now has a moulded wheelchair to help support her in a better position.

In February her gastroenterologist whom she’d had since a few months old, left the trust so we now have a new one. Thankfully she seems lovely and on meeting Seraphina she ordered a whole list of tests which we are waiting on results for & has also referred her to the pain team as her morphine isn’t currently controlling the pain from her bowel (which has started bleeding again intermittently).
They are also considering switching her immunosuppressive treatments depending on these results. At the moment she is also on IV steroids but this isn’t something that can be considered long term.

The other thing Seraphina is currently struggling with is pressure sores… because she’s not been absorbing feed as she should, she has lost weight which means she developed sores on the base of her spine. We are currently treating them with cream and dressings but long term higher grade pressure relief is being looked into for her bed and chair.

One bit of good news is due to our new OT we have had funding agreed for a brand new specialist care cot for her.. she was even able to choose the colours for the padding… she’s gone for a rainbow theme with 10 different colours (one for each panel around the sides of her cot ). She’s a big fan of rainbows & things that sparkle so we’ve bought her a sparkling rainbow blanket to go with her cot when it arrives!

Thank you to everyone that has sent Seraphina post recently, she absolutely loves receiving it and it really does bring a smile to her face even on the toughest days! We have to sing the “we just got a letter “ song from Blues Clues each time post arrives!

Update 17th October 2021

Seraphina has found the pandemic situation extremely hard.. We started shielding at the beginning of March 2020 and due to her state of health & immunosupression we were advised to continue shielding until she has had all 3 vaccinations… currently she has had only one so trips outside even within our little estate are very few and always with a mask etc.

During the past year she has needed two surgeries one of these was during the first lockdown to replace her current central line with a bigger one.
We also now go into hospital every 4 weeks for an infusion of a stronger immunosuppressive treatment along with IV steroids to try and keep her inflammatory bowel & arthritis under control as well as her weekly injections at home.

She still experiences intermittent bleeding from her bowel & pain from her reflux and the hospital is aware that she needs another endoscopy/ colonoscopy but are holding off until it’s safer to do so. She is still having iron infusions when necessary.

She has had a spinal review which has shown her scoliosis has progressed and she has been cast for moulded seating to help with her positioning and hopefully make her more comfortable when sitting.

She has also had an orthopaedic review as there was some concern over whether her hips were in the sockets correctly, thankfully yes, they are. The pain she is experiencing is from arthritis in one of her hips.
Thankfully her morphine dose was increased at the beginning of this year to help her cope with the various causes of pain/ discomfort she has.
All this combined with being prone to repeated infections ( as I write this she has just been started on another course of IV antibiotics) has meant that at the moment she has become quite down at times despite our best efforts to keep her entertained & distracted.It can be very difficult getting her to understand her situation as she it in effect ( mentally) a 5-6 year old in an almost 15 year olds body!!

We have decided to rejoin Post Pals to give her a bit of a boost & so hopefully she realises she’s not on her own & people are thinking about her & hopefully make her feel a bit brighter.

Update 20th May 2019

Seraphina and family have taken the decision to move on from post pals.

Update 24th April 2019

Seraphina is still very much in and out of hospital with infections so life has been quite busy, although we are thankfully able to do IV antibiotics at home so she hasn’t stayed in longer than necessary as we can continue treatment at home.

She is currently feeling a bit sorry for herself as she needs a transfusion due to bleeding, but that is hopefully happening on Friday so she should perk up a bit after that.

 Her arthritis is still not well controlled and now neither is her inflammatory bowel, so once again on Friday we need a way to move forward with treatment. Her hands are particularly swollen at present.

We haven’t been able to go out and about much due to infection risks (we had a phone call to say her white cell count and neutrophils were too low), however we did bite the bullet and take her out on Easter Monday to a local Easter Egg hunt at a country park where she was able to find plastic eggs and then (thanks to a lovely lady in the bookshop ) exchange them for a story book of her choice instead of chocolate 🙂

Thanks to everyone who has taken the time to send Seraphina cards and gifts. She really does appreciate them!

Thanks to Wendywoo for the Easter bike bag holders, Nicola for the Easter decoration & Maya Palmer Green for writing Seraphina a little story.

Also special thanks to the Pencil genie for the lovely Chihuahua drawings! 🙂

And thanks to PostPals again for the musical hippo light show which is still put on EVERY night and in the daytime when she’s in pain even with sore fingers she can still switch it on 🙂

Update 17th September 2018

It’s been a very busy few months here. Seraphina has been backwards and forwards to hospital quite a bit with various infections (mostly UTI’s) and needed IV antibiotics. She also had some investigations done under anaesthetic as she had some bleeding from her oesophagus despite medications added in for suspected return of reflux.

The results of these were that yes she does have bad reflux again, however she has had 3 operations called ‘Fundoplications’ previously as well as multiple other surgeries so it was felt by the hospital to be far too risky to try and do another as her risk of rupture/other complications due to the fragility of her GI tract/scar tissue is very high. Her gastrostomy is now on drainage all the time to try and prevent aspiration, however despite this she is uncomfortable most days so we need a plan regarding this.

She has also been having a reaction to one of her immunosuppressants, and her arthritis isn’t at all well controlled at present (another cause of pain) so it has been decided to put her on steroids to try and get a handle on things and if things haven’t improved by the beginning of November we will have to discuss alternative treatments.

As a result of her being uncomfortable for various reasons she has unfortunately started to ‘self harm’ in the form of repeatedly scratching her palms/trying to bite, so we have been advised to have a referral to a specialist OT who can perhaps provide wrist splints to try and protect her hands a bit whilst we try and get on top of the discomfort.

In other news, Samuel has finally got help at school having got a diagnosis of Autism. This is a huge positive step as he has been struggling but school are being very good with him!

Thank you to everyone who has sent post to Seraphina, Samuel and Eve! Special thanks to Quangle Wangle for the beautiful bile bag holders & Beverley Rudd for the unicorn lights!

Update 16th March 2018

Since the new year quite a lot of time has been spent trying to transfer all her care over to our new area, not quite managed all of that yet as funding needs to be agreed for new syringe drivers etc but getting there slowly.
Of course in the midst of this Serapina decided that she woould scare myself and her sisters by suddenly losing consciousness in her bed and require an ambulance…. it was discovered that she is having issues maintaining her blood sugars, we already knew that she could drop her blood sugar quickly but now we are having high blood sugars as well. we now have a ketone monitor as well as a blood sugar monitor to help keep an eye on this while they work out the cause, she has had various tests including a scan of her pancreas.

Seraphina has had quite a few hospital trips monitoring her scolliosis… she has now slight rotation in her lower spine, her Arthritis ( one of her immunosuppressant has been doubled ) and her weight/gastro function.
Thank you to everyone who has sent her post especially Ellie Ewbank, she loves the girly parcels and the photo of the Labrador who had shredded a load of presents really made her giggle!

Thank you also to whoever sent Samuel the guiness book of records gamers edition.. that was a HUGE hit!

Big thanks to everyone who sent Eve post for her Birthday.. th Harry Potter stuff was an extra special treat and really helped as she is struggling to settle into her new school and misses her friends in her old school.

Thank you again to everyone who has sent smiles to our family.

Update 30th November 2017

Seraphina initially had a rough few weeks with gut issues & not feeling great. We are moving house in 2 weeks and so been liasing with local services to get them transferred to a new area. This has actually worked out well as her height and weight have been reviewed in light of her not being able to absorb as much feed and she’s been put on an additive which we put in her tube feed to help her gain weight & is on monthly ‘weigh in’s’ to keep track. Couldn’t quite believe that she is actually 5 foot tall now!, such a huge difference to the tiny 1 lb odd preemie who fitted in my hands!.

She’s also now got a new wheelchair with gel padding and memory foam in the seat & back to help protect her hips/ bottom & spine from pressure. She’s just celebrated her 11th Birthday, thank you so much to everyone who has sent her post. We are up in Sheffield again shortly to see the spinal surgeon again regarding her scoliosis so hoping it hasn’t progressed any further.

Update 31st July 2017

Seraphina has unfortunately lost most of her mobility now. She was assessed for a walker back in March but when it arrived in June she was no longer able to use it. Her legs have been splinted & she has special boots which we hoped would help along with extra straps on the walker to support her but it’s just too much for her and so she is now 100% wheelchair dependant.

She has also been unable to go horse riding which is something she has missed a lot but currently she isn’t strong enough from a trunk control point of view and her lack of mobility causes issues.

We’ve also had an increase in seizures & she has gone very thin. After discussing with one of her consultants he suggested it may be a progression of Rett syndrome as she begins to hit puberty. Increased seizure activity, muscle wasting & loss of mobility along with increased breathing abnormalities can be symptoms at this time.

She has been cast for a new improved ‘Sleep pod’ with gel cushion inlay along the base of her spine to help with the pressure sore issues associated with her being so much skinnier.

We also have an appointment to reassess her wheelchair as her lack of trunk control & scoliosis means that it’s no longer offering her enough support. We are hopeful that they will come up with something to make her more comfortable.

As we are still struggling with keeping Seraphina comfortable despite regular catheterisation she is now on antibiotics each day which should keep infections at bay. Unsure at the moment if she is on the correct one as she’s still quite uncomfortable at times but leaving it a bit longer and using regular pain relief to help.

Update 29th March 2017

Seraphina is generally doing ok from a gut point of view. We are managing her symptoms pretty well with her medications and iv’s. She has just had another transfusion to boost her iron levels which still regularly drop.

She is due to be admitted for an open ended/ long stay on 9th April under Urology/ surgeons as she is still having issues in this area & blood sugars , so we are gearing up as a family for having a period of time apart.

Seraphina’s condition is lifelong and will always have up and downs/ new developments and therefore after a lot of consideration we have decided to leave Postpals and give some of the sicker children like those with cancer that Postpals is more geared towards, a chance to benefit from everything that makes Post pals so special.

Thank you so much for all the cards/ post, love & support Seraphina and her siblings have received

Update 18th November 2016

Seraphina has been up and down to hospital a bit over the last couple of months with urine infections, gut flare up, urology investigations and more recently investigations into her adrenal gland function as there is a concern that it is no longer functioning as it should be and whether this is the cause of her sudden drops in blood sugars. We are waiting for the results of these tests.

She did manage to go on one of the fantastic Post Pals Chessington trips which she really enjoyed, especially seeing all the animals. Thank you to Nationwide Building Society in Northampton, Swindon and Bournemouth for Seraphina’s parcel of comics, cards etc and to Chayah Nechama Brontin for her lovely letters/cards.

Update 7th June 2016

The new drugs for Serphina’s arthritis seem to be working well and she is tolerating them without nasty side-effects which is great news.

Seraphina has been not doing great gut-wise, she has struggled with her intake of feed and has had two bowel bleeds which meant she had to go into hospital to have a transfusion. She has been very tired and wanting to spend a lot of time in bed again and has dropped a centile on her weight chart. Her blood sugars have also been erratic and the dietician /consultant believes she is ‘dumping’ her feed which means she sweats/blo0d sugar drops and she doesn’t absorb any of the calories/nutrients. She has been referred for investigation on her pancreatic function to see if her body is able to produce the right amount of insulin.
She is also having continuing problems with bladder and kidney function and it has been suggested that her bladder is behaving just as her colon did when it started to fail. She has been referred to a specialist urologist and has been on IV antibiotics and 24 hour IV fluids for the last week along with 2 opiates for pain relief.

Update 22nd January 2016

Unfortunately, Seraphina was poorly all over Christmas. We had an emergency consultation with her Rheumatologist on Christmas Eve, as Seraphina had had a line infection and urinary tract infection for which she had been on IV antibiotics and this had meant she couldn’t have her arthritis/gut injections. By Christmas Eve she was unable to stand as her joints had flared up badly and she was just lying in bed crying with pain. She was also unable to tolerate any feed at all so back on IV fluids and needing Glucogel/IV glucose to control her sugars. Thankfully, her Consultant suggested some tablets to help with her inflammation and pain and within 48 hours or so her pain was more manageable.

We were back in Sheffield at the beginning of January where she had an assessment by the whole team. Unfortunately, after this recent flare she has been left with restricted movement in both knees and both elbows.
From a feed point of view we continue to struggle to get her to tolerate enough and questions have been raised about putting her back on to full TPN. However, we are hopeful that once her new injection has had chance to take full effect she will tolerate more and regain some of the weight she has lost.
Her physio has been out and her sleep system has been sent away (and returned) after being made more comfortable and safer for her when spending extended periods lying down. Hopefully we won’t have any more pressure sores on her back.
Thankfully, she has started to make progress over the last week or so and we are having a bit more time out of bed again since restarting all her medications.
Thank you to everyone who has sent Seraphina happy post over the last month!

Update 29th November 2015

Seraphina has had a rough few months so is rejoining Post Pals. She had an emergency hospital admission in August with all the symptoms of an obstruction, which triggered her seizures. The hospital rehydrated her as she had lost a lot of fluid and she was discharged back on TPN (intravenous feeding which she has been on for 4 years). The consultant is querying whether it was another volvulus (intermittent twist in her bowel), but as yet we are unsure unless it reoccurs.

When Seraphina had recovered from the admission we tried tube feeding her again but she continued to struggle to tolerate enough calories and fluids. She had begun to have problems passing urine, so the decision was made to put extra fluids up intravenously each night.

Seraphina’s arthritis was also causing problems with her hip and lower back and investigations showed that she has crumbling arthritis in her hip and it is still active despite her injections.

As it currently stands, her gut is also flaring monthly so we now have glucose, potassium, etc., in intravenous bags to rehydrate her and give her gut a rest when she stops tolerating feed. She has also begun having more problems with suddenly dropping blood sugars, so we have Glucogel for these instances.

Two weeks ago we began trialling another drug (a biologic one) to further suppress her immune system and try and get a hold on the bowel and arthritis issues, as she had become too tired to horse ride. She only managed a couple of hours up out of bed each day before needing to go back to bed and lie down and rest. Unfortunately, just as the treatment started she developed an infection round her central line (the line which goes into her heart) and so she has been on IV fluids and 3 x 30 minute infusions of antibiotics each day to try and clear the infection. A side effect from this has been that she has not been able to have any of her immunosuppression/arthritis drugs and her tummy and joints have been particularly painful. She has had a few days of being rather upset.

We are hoping that once the antibiotics finish she will be able to restart her medications but, until then, she is requiring lots of pain relief.

Update 24th March 2015

Seraphina has made significant progress on enteral feeding since she had her ileostomy and fistula operation and is managing periods of tube feeding again. There is some concern about her managing to maintain her weight off TPN completely but she is being closely monitored. Unfortunately she has started having bowel flare ups again and her arthritis is not very well controlled, even though her colon is de-functioned, and we have had a couple of episodes of bleeding. The option of complete colectomy has been discussed again and may be something we have to consider, as is adding a biologic drug as well as her other drugs, to further suppress her immune system and control flares.

She has also got a back brace now as her scolliosis (spine curvature) has progressed. So far she’s not too impressed with wearing this.

Despite all that has been going on she has maintained her smiley, giggly outlook on life and is still doing her horse riding which is the highlight of her week. Home schooling is also going well. She now has her own eye gaze unit and is learning how to use this to communicate at home.

We have decided to move on from Post Pals now but want to say a big thank you to everyone who has sent Seraphina and her siblings post and created many smiles over the years.

Update 9th July 2014

As I type this update Seraphina is in theatre. She is having her bowel de- functioned as it no longer works. She is also having some procedures done on joints which still have active arthritis despite the many medications she is on.

Mobility-wise she has been miraculously back on her feet without the use of a gait-trainer and has even begun to do horse-riding with her wonderful Carer holding her on the saddle. She absolutely adores the ponies and anything to do with horses or ponies is a hit right now. She has also been learning how to use Tobii eye gaze technology and has such a lot to say! We are currently fundraising in association with The Sequel trust to raise enough to get one of her own.

We are praying this surgery works as it is her very last chance to be able to feed again.

Update 8th March 2014

Seraphina continues to have pain and problems with her bowel/sepsis including one very nasty episode at the very end of January which involved her being transferred from High Dependency in Coventry to Birmingham Childrens as she was too acute to transfer to Sheffield. The sepsis once again was found to originate in her bowel. She also suddenly lost the use of her right arm which also became very painful, so bad in fact that her morphine infusion had to be changed to Fentanyl and Ketamine just to try and keep on top of the pain. She was eventually diagnosed with Rheumatoid Arthritis (sparked off due to her inflammatory bowel disease not being well controlled) and given IV steroids to bring down the swelling in her joints. This worked well until it was stopped and the effects wore off… then both her arms and legs, fingers, knees, etc, all swelled up and became painful. So strong anti-inflammatories were prescribed to try and bring it under control.

The last few weeks have been a balancing act to just keep her stable until her admission to Sheffield for multiple procedures on Sunday (9th March) with surgery on Monday. We are praying that all goes smoothly and we end up with a positive plan of action/way forward in her treatment both of her IBD and Arthritis.

Thank you to Kerry and Mark for Seraphina’s story books and bookplates especially the ”Tangle Fairy”… you must have seen Seraphina’s hair first thing in the morning!! Also thanks to Karen and Toni for the lovely Webkinz Koala.

Update 12th September 2013

Seraphina is still very much up and down and for the last few months has developed unexplained temperatures/repeated sepsis associated with her bowel. She has been in hospital several times with these and once ended up in HDU/ICU. She has had a lot of her medications increased and switched to an IV form as she wasn’t absorbing well through her gut.

We had a conversation with GOSH gastro consultant and a letter saying they were unable to treat Seraphina as they didn’t feel they could offer anything to improve things which was a big blow as we had pinned our hopes on GOSH ‘specialists’ being able to improve her quality of life. We are now waiting an admission to Sheffield Children’s to reassess her bowel and look at possible removal of her colon.

Meanwhile, her sister, Lydia, is having surgery on her legs on the 25th September. However, during the pre-op they found a problem with her heart which may need corrective surgery. We have an appointment about this on 17th September. Understandably Lydia is quite anxious about this and her operation.

Huge thanks to Kim Lawrence for Seraphina’s monthly projects and the wonderful cushion. Thanks to Karen (sami’s) friend for the little toy baby unicorn too.

Update 6th June 2013

Yesterday Seraphina was rushed to hospital with septicemia and placed in ICU. She had the night from hell with fits, heart rate of 180 asleep ,temp of 40.5 and struggling to breathe. They have decided to stop using her central line and cannulated at 3am. Temp now responding to paracetamol and lower. Slight technical hitch is she’s no longer weeing despite fluid boluses and blood pressure still low. So puffy she can’t open her eyes properly, bless her.

Update 10th May 2013

Seraphina is going through the mill a bit. She’s currently on 9 intravenous drugs a day. She is fighting a kidney infection and a staph infection/cellulitis around her line. She has had her morphine levels increased and now her bowel has started with a nasty flare up. Sheffield have started her on high dose steroids today to try and calm things down as she is having significant bleeding in her bowel. She is quite drained and fed up and teary today.

Meanwhile, her sister Lydia (who has scoliosis and syringomielia) has had her orthopaedic review and they have decided she needs something done surgically on her legs. There are two options for surgery but both involve being in plaster from hip to toe for about 8 weeks. Understandably Lydia is more than a little worried about this. Your prayers would be much appreciated for both girls. Thank you.

Update 8th May 2013

Seraphina has been very much up and down over the last couple of months. Some days have been brighter than others. At the end of March we went to Great Ormand Street hospital for an assessment. En route, Seraphina decided to stop breathing so we were ushered off the motorway and ended up being blue lighted to hospital with a police escort! The cause for this episode was found to be a urine infection, of all things, which triggered seizures. The assessment was very thorough, the consultant said they had seen only one other child like Seraphina. Unfortunately they had not managed to ‘fix’ the other child which was a bit of a blow. We are now waiting for an admission for further tests, although the general opinion is that colectomy is the way to go.

Sheffield have also seen her and due to increasing bowel pain they have increased her morphine and added in some other intravenous drugs. As I type this she is battling two infections… another urine infection and now an infection around her central line which we are hoping hasn’t spread into the line as well. The last couple of days she has been sleeping more and tiring much more quickly which she finds frustrating as she wants to do stuff but her body just won’t let her. We are praying for an improvement soon.

Thanks to the Lawrence family for the lovely Tiger who came to tea story sack.

Update 22nd January 2013

Seraphina had a good Christmas health-wise, she remained pretty stable and her Christmas present to us was her starting to walk (something we had been told she would never do). She is very wobbly but it is so fantastic to see.

Just now she is struggling again. Under the hospitals direction we decided to try and see if her body would accept blended food in very small amounts, with a view to reducing and eventually getting her off TPN. It seemed to go very well for a short while and her stomach emptied, but it seems that her bowel just doesn’t want to function and so in effect we just ‘fill it’ with food which doesn’t go anywhere. She then needs laxatives, gut medicine and suppositories to get it to come out the other end. Her Consultants are still wondering if she would be better off if they removed her colon but GOSH experience with Rett girls says that the bleeding etc just moves up to the small bowel and stomach in these cases, so it is difficult to know what to do for the best. She’s having increased gut pain requiring morphine and today bleeding again from her bowel, and she also has Ecoli in her urine which still hasn’t gone despite two courses of antibiotics.

We were also meant to go up to Sheffield for a transfusion but unfortunately this has had to be postponed due to the snow, with a result of Seraph being increasingly breathless and dizzy, so she’s not feeling great. She has cried on and off all day today which is definitely not her, so she must be feeling rubbish. Praying that a new date isn’t too far away.

Thank you so much to Seraphina and her siblings Christmas Elves. Your lovely presents and cards raised many smiles. Thank you also to the anonymous person who sent a parcel of crochet goodies including a black cat and a little rucksack. They are beautiful and must have taken so much time to do – so thoughtful.

Update 22nd June 2012

Seraphina is still waiting for admission to Great Ormond Street. Sheffield have said that there isn’t anything more they can do for her and so a second opinion has been sought from GOSH. Unfortunately GOSH have had a bed situation and Seraphina’s admission has been cancelled twice so far. She is still totally TPN fed. She is also now on IV medication twice a day as she has had problems with persistent hives and itching. She continues to have bleeding intermittently and she has had problems with pseudo-obstruction in her bowel, the periods of ‘stability’ are becoming shorter. It was decided a few weeks back that it was time to start morphine at home and so this has been the case. The Morphine has helped a lot with the increasing amounts of pain she is in when her bowel flares up.

From a motor skills point of view, she has learnt how to sit upright on the sofa aided and stand up from there too which is fantastic.

Seraphina still continues to amaze us with her love of life and smily disposition despite all she has to cope with.

Special thanks to Claudia from Germany for the Princess Lillifee stuff which really made Seraphina smile and to Rosie Montague-Vaughan for the box of birthday presents you sent for Seraphina’s siblings – that was such a sweet thing to do.

Update 19th June 2012

After a three month stay in hospital Seraphina is home. She loves being back home with her family and her ”coming home present’ was not one but two gorgeous Ragdoll Kittens called Cherub and Cupid… these little fellows raise a lot of smiles (especially when they are being naughty!).

She has now got confirmed chronic intestinal failure and is totally TPN dependent. We have had to learn how to do IV’s and take blood and urine samples weekly, sometimes more often. Seraphina continues to suffer from bleeding in her bowel, multiple infections and pain for which we have potent morphine based medicine. Unfortunately her iron level has dropped quite sharply again and so she has to have quite a long transfusion again next week (Tuesday). We’re praying that she is well enough to go to the Post pals party on the 30th June!!

Thank you for our Post Pals post and to Alex Stiles Welch for your lovely letters/cards and to Karen Winch for the bits for the Kittens.

Update 27th February 2012

Seraphina was admitted to hospital 9 days ago. When we got admitted Seraphina was in a poor state, she wasn’t tolerating feed or dioralyte, she had diahorrea and every nappy contained blood. She was sweating with pain and nobody really knew what was going on. She had bloods done and was out onto IV fluids via her port. After a chat with the consultant they went to book an endoscopy and colonoscopy for the 1st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.

She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.

When it went off I went down expecting to be called straight in to see her. I wasn’t though – instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That’s when alarm bells went off.

He explained that their findings had been extraordinary. Seraphina’s colon was visually like bubble wrap, so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation. The surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel. He did. Unfortunately when he took the biopsy he described it as ‘trying to biopsy cling film’ and her bowel perforated. He said that Seraphina’s bowel was so bad that it would never recover and she would not be able to be fed via tube again… it would be TPN only (which is feeding via a vein).

In the days that followed Seraphina required more and more morphine and other pain medication had to be added in. She bled out of her gastrostomy, her heart rate dropped very low, so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.

Saturday was an exceptionally bad day… her bowel spontaneously perforated again and we were told it could happen again at any time. For safety’s sake she was already on multiple antibiotics.

Today has been better – she’s still on morphine but not needing as many boluses and has sat up in her chair for a while.

The plan is a long one. On the 22nd of March she will go back to theatre to see if the weeks on TPN has improved her bowel any. She will have an endoscopic evaluation, something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds (this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic), she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock… total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. If the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides. So we are in another 3 weeks until surgery and then they have said around another 7 weeks afterwards… a loooonnnng time.

When she comes out she is going to be spoilt… she has wanted a cat for a while and so by hook or by crook I want to get her one. Bless her, even on the worst days when lying lethargic and worn out from pain, the nurse said to her “are you getting a kitten?’ and her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess. Somehow we will find the money to buy her one. It’s the least we can do after all she’s going through.

Thank you for all the precious people who have supported us through this week. Thank you for all the prayers too… it’s so good to know that there is such a cry to heaven going on for my gorgeous girl.

Update 18th January 2012

Seraphina had a good Christmas and new year despite her tummy being poorly for part of it. We were all very glad to be home together.

Since then her tummy has been causing her more distress resulting in three bowel bleeds last week. The nurses have come out to see her regularly and believe its time we had morphine available at home to help her cope with out breaks of pain. It also seems her port-a-cath has stopped working. We were seen at Sheffield yesterday as a result of her bleeds and not being able to tolerate feeds again. She has been given more steroids and pain relief and we have signed consent for her to have a colonoscopy and endoscopy with biopsies and her port changed. They are also going to arrange for her teeth to be looked at under the same General Anaesthetic. We won’t know for definite until after the surgery but the Gastroenterologist believes that Seraphina’s residual colon is just not working any more and has mentioned that the best thing may be to remove it all together. However, this is a big operation and so we are understandably very anxious about this possibility. We have been told her surgery will be in the next 2-4 weeks and so are just waiting for the call now to go in.

A big thank you to the children’s’ Christmas Elves for making their Christmas extra special. Thank you also to Lydia’s Elf for the lovely fluffy socks and foam bath for me, both were put to good use!

Update 10th December 2011

Seraphina has been in and out of hospital a lot recently. She has been diagnosed with a type of inflammatory bowel disease which means that she has been bleeding in her bowel. She has had a blood transfusion and a little while being fed by TPN. Now she is tolerating half strength feed. She’s also on long term steroids and immunosuppressants to keep the inflammation in her bowel down, which at the moment require weekly blood tests. Despite this she has a lot of tummy pain and diarrhea episodes which leave her drained. She is also very susceptible to infection now which means we have to be very careful with her and if she gets a temperature take her to hospital straight away. She has also developed a hernia over a past bowel operation site and so will need that repaired in the New Year.

On a positive note, a couple of days ago Seraphina took some steps all on her own which we are really thrilled about as she lost the ability to walk at 18 months when she went through Rett syndrome regression phase… what a STAR!! 🙂

Update 9th October 2011

Seraphina’s pain has been well controlled most of today. The plan is bowel rest and iv meds and to try dioralyte again on Monday.

Update 7th October 2011

Seri is now on continuous pump of morphine as iv bolus did nothing. X-rays showed grossly distended bowel and what they think is a perforation. We have got to go for more x-rays.

Update 5th October 2011

Seraphina went to theatre, the consultant said her colon is grossly abnormal; her entire colon is inflamed, raw and bleeding. It looks like we are going to be in hospital for the long run.

Update 3rd October 2011

Seraphina was rushed to hospital; her HB is so low due to internal bleeding that she is in danger of a cardiac arrest. She is being admitted for emergency transfusions and investigations. She is extremely frightened and anxious to the point of being sick when anyone comes near her.

Update 21st June 2011

Seraphina has been home for a month now. We are still having ongoing issues with her gut. She has been diagnosed with chronic intestinal pseudo-obstruction and we now have a rectal tube that we have to use on a regular basis to ‘deflate’ her bowel. The long term plan is to have a third stoma placed in her bowel, but this is a big operation for her and so she needs to be a bit stronger before we do it. She is rather skinny and gets tired quickly at the moment but she is still smiling and that’s the main thing.

I have updated her blog now so apologies for those who were waiting for an update.

Update 11th May 2011

Seri is in theatre now as she has 3 twists in her bowel. Please say a prayer for her.

Update 10th May 2011

Seraphina is very poorly and on the list for emergency bowel surgery tomorrow.

Update 9th April 2011

I just want to say thank you to everyone who has been supporting Seraphina as we go through this bad patch in and out of hospital. The cards and bath ducks have really cheered her up even on the most poorly days.

We are at the Evelina children’s hospital next week in London. We’re just praying they have some good ideas about the next steps in treating Seraphina so that we can have her back to her lively bubbly self soon!

Update 10th January 2011

It has been a bit of an up and down month. Seraphina had her operation at the end of November (30th) and we had high hopes for the outcome, but unfortunately she had a lot of pain from the procedure which is unusual, and when the casts on her legs were changed she only had the new ones on for 48 hours before she was at the stage of needing Morphine for pain. We had to have the casts removed as her feet were swelling up and when they were removed we found that she had grade 3 pressure sores on the front of both ankles which were weeping and bleeding. We had to dress them and change the dressing every day which she found very sore. Then she unfortunately had an allergic reaction to one of the dressings which meant that she had hives all over the front of her ankle too which still haven’t quite gone. The operation was not successful and so unfortunately she is booked for another surgery (which they said should be this month) to cut through her Achilles tendons and also open up the back of each calf and cut through the muscles there. She will then be in plaster for 4-6 weeks. We are praying that this goes well and we don’t get any more pressure sores.

On the positive side, we all managed to spent Christmas together which was wonderful considering last year was spent in ICU. Seraphina even got the hang of using her hands to unwrap her Post Pals presents!!! We thought she would get a bit overwhelmed and so only gave her a couple to begin with, but she started screaming and when we asked her what was wrong she took my hand and pointed it in the direction of her Post Pals presents… so I said ”do you want more?” and she clapped! Clearly she was getting the hang of presents VERY quickly this year!

Thank you to the children’s Elves for making this Christmas extra special, particularly the person who bought Lyida’s Jacqueline Wilson collection, Sam’s RAF Elf (who according to Sam drives very fast planes!) for the Where’s Wally? books and slinky, Becs who made Aimee’s Christmas with all the card making gear and Seraphina’s posties/elves for the littlest pet shop toys, Peppa pig book, bath ducks etc etc, not forgetting the lovely woolly socks from Finland! Also a big thank you to MY elf for the lovely chocolate truffles! Definitely made my Christmas!

All thoughts and prayers would be appreciated for Seraphina’s upcoming surgery and also that she manages to get rid of the bad chest she has had for about 6 weeks now which makes sleeping difficult due to coughing/needing suction.

Update 25th November 2010

Seraphina has had a better month health wise and now we are trying to keep her fit for her surgery up in Sheffield on the 30th November.

We went to the Rett syndrome conference last Saturday with Seraphina. It was good to meet other children with Retts and learn more about Seraphina’s condition. Seraphina was parked in her wheelchair next to a large Christmas tree at one point and discovered a fascination with large shiny baubles which she was trying to kick into her wheelchair with her feet!! Both she and the few people that saw her thought it was very funny!

Her sister, Lydia, had her brain scan yesterday (24th) so we just have to wait for the results now. She has been very much cheered up by the couple of cards she had so thank you very much for those.

Thank you to Meri M from Slovenia for Seraphina’s story book, the people who have sent birthday cards ready for November 27th, and the children from the Army base in Riteln, Germany, for their hand made booklet with Peppa pig picture on.

Update 8th November 2010

Unfortunately we are going through a bit of a tough patch at the moment. Seraphina seems to be getting one bug after another and is getting really run down. She has caught another bug over the weekend and is very chesty and miserable and requiring a lot of suction.

We did make it to Sheffield – she had her chest drain attached and we saw the Orthopaedics consultant – the reason for the pain in her hip for the last few months is that it is partially dislocated! Her muscles and tendons in her legs are now extremely tight which is also causing her pain and so she is booked in for surgery and serial casting on her legs for 8 weeks. We should get the appointment through in a couple of days but he said it will be for sometime this month, so it looks like she will be in plaster for her birthday.

The other news we have is Lydia (who already has scoliosis and Syringomyelia) which causes a lot of pain, has to have a brain scan on the 24th November as her legs are also causing more problems and we finally got to see a neurologist who believes she has Cerebral Palsy!! This was quite a shock and Lydia is a bit tearful about it at the moment.

There are a few other heath issues going on with Seraphina too and to be honest we are struggling a bit so your thoughts and prayers would be appreciated.

Update 3rd October 2010

This month has ended better than it started. The first part of the month Seraphina had to be taken to hospital as she had seizures that wouldn’t stop and so had to be given a drug to stop them.

Unfortunately, she had a urine infection which triggered them off and while she was fitting she aspirated and so needed antibiotics to protect her from a chest infection. Her oxygen requirement doubled at this time which was quite scary for both of us. She also developed a different kind of seizure to add to her repertoire and had some sort of collapse and we are still waiting to see what the Consultant thinks may have caused it. She had only just got over the seizure episode when she needed to be checked over again, as she came down with a horrible tummy/fluey bug which meant that she couldn’t be tube fed her normal milk, but had to have dioralyte for a while and was really quite poorly with it. Thankfully she has all but got over it now but it has really knocked her health-wise so she is a little weak and wobbly at the moment. We are hoping that next month is a bit better health-wise for her.

Thoughts and prayers are appreciated for 21st October when she goes to see the neurologist and on the 25th when we are in a different children’s hospital for her to have a permanent chest drain valve fitted which hopefully should help with gas build up. Seraphina gets very very scared and upset about going to hospital now so all prayers are appreciated.

I am just in awe of Post Pals. The difference it has made to Seraphina (and me) is immeasurable. It is so lovely to see her little face light up when she sees an envelope, she is really getting the idea of this now and can’t wait for me to open the post for her. It was also lovely for Samuel to get a present as it is all too easy for siblings to feel a little left out at times when caring for a child with such complex needs, so thank you for making his day.

Thanks to Lilli, Isabella and Elouise for the lovely postcards from Hong Kong and also to Jane Fawcett for the postcard, what fantastic pictures of your cats! Thanks to Percy for telling us about his wonderful adventures and also to Sarah G for her wonderful letters that all the children look forward to me reading out! I’m afraid Seraphina did laugh quite a lot at you getting all wet and muddy though, especially when we kept repeating the word ‘splosh’ to her, she thought it was quite hilarious! A big thank you to Samantha for Samuel’s Helicopter craft kit, he loved it! And also a thank you to W. Krul for sending Seraphina the gorgeous yellow butterfly toy which she has become quite attached to!