Seth Marshall - Rogers

                                                  5th September 2007

Our beautiful baby boy Seth is born at 9.27am weighing 9lb 9oz's.  After a natural delivery with no problems we have bought him home  to enjoy our life as a family of four.

November 2007

Seth is a happy baby.  He is breastfed, sleeping through the night and generally doing really well.  He is a lazy baby!  Wont keep himself up right, hates laying on his tummy, needs to be supported when picked up.  We put this down to being slower than his brother but as nobody else is worried, neither are we too much.

December 2007

Seth is being weaned off breast feeding onto bottle feeding.  The transition is going well except for all the sickness!!!  He is also starting to cry a lot.  He just wants cuddles all the time and now has started waking at night fidgeting like he has really bad wind.  I have to feed him in th end to re settle him but I dont think he is really hungry.  On the advice of health visitors I have started weaning him.  Only a bit of baby rice but that doesn't seem to be helping.

 January 2008

Things are not good.  Seth is being sick all the time.  We just cant get him to keep anything down.  The screaming has got worse and he is NOT happy.  His fists are still clenched like the day he was born.  We cant get him to open them and he seems so uptight all the time bless him.  I have had enough.  I am going to the GP.

Been to the doctor.  They have changed his formula saying maybe he is allergic to dairy.  Lets see how this goes!

We have been on the milk 48hrs.  No change.  He is getting worse not better.  In desperation I phoned NHS direct today.  They heard Seth screaming and have told me to take him to A&E.

 Well after asking for a second opinion, we were kept in and they have diagnosed severe reflux.  He has been started on two different medications and hopefully things will improve.  It is friday night, thank goodness we are home.

Back to the hospital today (monday).  Seth has been having 'episodes' over the weekend.  Eyes rolling, held tilts back, his body goes stiff and trembles.  They have got worse and worse and are happening 5-6 times a day.  He is also sleeping all the time and I am having to wake him to feed.

 The registrar saw Seth have an 'episode' today.  They have said thy think they are seizures and are worried.  We are going to Oxford tomorrow for Seth to have an EEG.  This will test the brain activity.  Ben and I are really worried but he needs to be sorted.  We should get the results on Friday.

February 2008

 Went to Oxford yesterday and the hospital called today to say they wanted to see Ben and I.  The results are not good.  Seth has West Syndrome (infantile spasms).  This is a rare childhood epilepsy.  It will most probably cause him learning difficulties and development delay.  They have started him on a new medicine for the seizures and tomorrow we are going to hospital for further tests.  An MRI scan and a lumbar puncture.

Things just aren't improving.  we have been backwards and forwards to the hospital and we have been admitted a few times to try and control the seizures.  Seth also has very jerky movements which the doctors think are 'cluster seizures.'  Until these stop they don't consider the medicines to be working.  We have been to Oxford again to see Seth's neurology consultant.  He has told us things dont look great and that Seth could have severe problems.

Monday 18th February

Seth is poorly.  My health visitor has been and she thinks he needs to be looked at.  He is making high pitch screeching noises when awake and his body is quite jolty.  Has only taken a very small amount of milk and is just not right at all.  Phoned the registrar at Oxford ad he wants us to take him to our local hospital to be checked over.  Hopefully we will be home very soon.

Tuesday 19th February

I am writing this diary from hospital because they didn't let us home!  They think Seth may have the start of a chest infection therefore his seizures etc will be worse.  They kept us in last night and we have to stay tonight but if he settles we can go tomorrow.  Poor Ben and Bailey.  They don't whether we will be home or in hospital from one day to the next!  Seth has been really unsettled today.  Has refused all milk offered.  He goes to take it but then just pushes it away with his tongue.  He has hardly slept and the whole time he is awake he is moving.  Not seizure like movements but very jolty, like someone is poking him and making him jump.  Again, nobody seems too worried so maybe it is just because he is poorly.  6pm.   Seth's jolty movements are terrible.  I am going to speak to a doctor tonight and see what they think.  He just cant stop moving and he has hardly eaten all day.  Solids just make him so sick and he just wont take any milk.

Wednesday 20th February

Well last night did not go to plan.  A doctor came to see how we were doing and to make sure Seth was settled for the night.  When she came in she was horrified.  She explained that Seth was not doing well and she wanted the consultant notified.  I agreed.  She spoke to her on the telephone and they agreed something was not right.  He was moved over to the room nearest the nurses station and they tried to control Seth's movements.  Everything they gave him didn't work so eventually X rays were done, bloods were taken and he was put on an ECG machine. IV fluids were started and IV anti biotics were given just in case of any infection starting.   Ben had to go home to be with Bailey, our 2 yr old son so they warned us that if he didn't feed over night they would put an NG tube down to keep him hydrated.  After 6 hrs of trying to control his movements things were not looking good so they put a canula in and he was given sedation to give his small body a rest.  Our beautiful baby is 5 mths old and looks so poorly.  Its 2pm in the afternoon and after Seth not taking any milk this morning he has had an NG tube fitted.  It was horrible to watch but he needs some milk to keep his strength up.  They keep trying different medicines but nothing can stop his movements.  We are worried to why things just are not settling.  The consultant has come to see Ben and I and have said that they want to transfer Seth to the neurology dept at The children's hospital in Oxford.  He is not stable enough though so it will be later on in the week.  They will continue to try and stabilise him whilst they get the transfer sorted.  We are worried but surely it just needs someone to find the right medication and he will be fine.

Thursday 21st February

Well yesterday was officially the worst day of our lives to date.  Yesterday things went from bad to worse.  At 8pm last night the doctors told us that Seth was very sick and he needed to go to Oxford ASAP.  They would transfer him the next day but it would be sooner rather than later.  One hour later Seth still wasn't responding and there was nothing more Stoke Mandeville could do for him.  The consultant came in and told us that Seth was worse than they had first thought and he needed to have specialist treatment.  His little body needed a rest and he was so very poorly.  The ambulance was on its way and he was to be ventilated and taken to the paediatric intensive care unit (PICU) in Oxford.

Today we are drained.  Seth looks so poorly.  He is covered in tubes and is hooked up to a ventilator.  Everything is being done for him.  What is happening to our baby.  Surely this isn't happening?  The doctors have decided to take him off the sedation and wait and see what happens when he wakes up. 

7pm.   He is awake and the movements are worse than ever.  The consultant came and told me that he doesn't have West syndrome and that they suspect he has a movement disorder.  We have no idea what that means but we are hopeful that it can be treated.  We are in the best possible place  so we are quietly confident they will make seth better.  I am staying at Ronald Mc Donald House tonight, this is a special floor of the hospital with rooms for parents with poorly children.  I want to stay with Seth but you can't in intensive care as there just isn't enough room.   

Friday 22nd February

We are devestated.  This morning the consultant told us that Seth has a severe brain disorded which they cannot cure.  They will try and treat his symptoms but they dont know what they are dealing with as they have never seen a child like this before.  They have told us that this is a life threatening condition and to prepare ourselves for the worst.  I can't write anymore as I am just so exhausted and too emotional.  We have been transferred onto the neurology ward and we will wait to see what Dr Jayawant will say on Monday morning.  He is Seth's consultant but has been away on holiday.

Wednesday 27th February

We have had an awfull few days.  Seth just isn't stabilising.  Dr Jayawant broke our hearts today.  He told me this morning that they have no diagnosis but they can tell from his poor response to everything and rapid regression that Seth has a degenerative brain disorder and they only expect him to live a very short life.  They can't give us a time scale but things are not good.  He can no longer feed orally so is tube fed and unless he is sedated he cant switch off to go to sleep.  His brain will not stop working so he can't control his sleep.  He really is poorly.  We have been moved onto the ward this week and I have met a great lady called Jo.  She is being very supportive and Seth has a new friend James.  Ben and I just dont know what to do, where to turn and how to cope with this terrible news.  This cannot be happening to our perfect baby.  He has lost his smile too since last week so even that part of our baby we have lost.

Tuesday 4th March

Seth has stabilised enough to be transferred back to stoke mandeville.  We have been told thay want him back in a few weeks for another MRI scan and also to talk about him having a gastrostomy fitted.  This means he can have a tube inserted into his tummy so his feeding and medicines can be given via that rather than him having a tube down his nose.  Back to Stoke for a day or two and then home.  We have been in hospital for just over two weeks and we want to go home!!  Seth had a VEP test today.  This gives the doctors a better idea of Seth's vision.  He has lost his ability to fix and follow and he isn't reacting to much so the doctors are concerned.

Before we left, the hospital told us they think Seth has a Leucodystrophy.  It is the only thing they can compare his symptoms to.

Seth is 6 mths old tomorrow.  He should be enjoying life, not struggling with every day things.

Friday 7th March

Seth has been a little unsettled the last couple of days but I have convinced the doctors to let us home.  We so want to get back to a bit of normality and enjoy our two beautiful boys. 

Thursday 13th March

Things have got worse since we got home.  Seth is very unsettled again.  Crying all the time, really loose nappies and just not sleeping like he was on his sedation.  Spoke to the registrar at Oxford yeaterday and he gave me some advice over the phone.  This morning though things are terrible.  Ben said we really should speak to the hospital again so I called them.  We are supposed to be going to Devon on Monday for a weeks break but I don't think Seth is well enough.

Well it is thursday evening and Seth and I are back in Oxford.  Things are not good.  Seth has gone right back to the way he was a few weeks ago.  The medication isn't working and he just looks so poorly.  We really don't know what is happening.  They are going to keep him in for a few days and watch him.  We are back in our own room again as they dont know if he has an infection or anything.

Monday 17th March

Things have not been good over the weekend.  He was so poorly on saturday that he had another lumbar puncture to rule out meninigitis.  Luckily the test results were clear but they are very worried for him.  We have been told Seth needs to remain in hospital for the next few weeks whilst they get him stabilised and do some more investigations.  He has already had so many tests to try and find a diagnosis but so far eveything has come back negative.  They have brought his MRI scan forward and have booked his operation for 3 weeks time.  Dr Jayawant has told me we wont be going home before that is done.  We are here for the long haul this time!  The nurses and doctors are amazing.  Everyone loves Seth and they make me feel so comfortable here.  I have a bed next to Seth's and they can't do enough for me.  Feeling really low today.  We should be enjoying our holiday, instead we are seperated again and Seth is very poorly.

Thursday 20th March

Today has been difficult.  Seth just not responding to anything.  Dr Jayawant is going away for 3 weeks and he told me that Ben and I need to talk about what we want to happen to Seth if he deteriorates very quickly.  He suspects this is the beginning of the 'next stage' and to prepare ourselves for the worst.  What has happened to our life?  This really cannot be happening.

 Tuesday 1st April

Having really bad nights.  Poor Seth, he just cant shut off.  He is really struggling.  His movements are really bad, he can't settle and he is struggling with his oxygen levels.  He is on oxygen to keep his saturation levels up and is having to be suctioned to keep his secreations at bay.  The occupational therapist sees him every day and she is so lovely.  She always talks to me and helps me try and re position Seth to help him.  MRI scan tomorrow but he needs a general anaesthetic so hopefully his oxygen levels will improve over night.  Ben and I are really nervous but he needs it doing.

Friday 4th April

We had a meeting with Seth's consultant today.  The results from the MRI are not good.  Seth's brain is shrinking rapidly.  He has such severe brain atrophy that they dont expect him to live for years, they have said months.  We still have no diagnosis but the MRI has confirmed that this is really happeneing.  We are devestated.  I think both of us had secretly hoped things would have stayed the same.  That was the best we could have hoped for.  That hasn't happened and instead the worst has happened.  We just want to know how long we have.  Seth is so precious to us, we can't go on without him.   Our hearts are breaking and we can't do anything about it.

Seth's operation is only next week now.  He is having a gastrostomy fitted and having a fundoplication where they tie the tummy off to help with his reflux.  They have said he will be in theatre for about 2.5 hrs.  I am terrified.  I haven't left this hospital for 4 weeks but Ben and I are going to go out for a while whilst he is in theatre.

Wednesday 9th April

Operation Day!

Seth is 3rd on the list.  He went to theatre at 11.20am.  Ben went with him for the anaesthetic as I just can't do it.  We went out and came back after 2 hours.  We didn't go and get him from recovery until 3.30pm!  The longest four hours of our life.  The operation went well but he is covered in tubes and his movements are horrendous.  I think we are in for a bad night.  On the positive side of things, Seth will have his NG tube removed tomorrow so we will be able to see his beautiful face again without tubes.

After an unsettled few days The consultants decide to start him on some new medication.  They don't know how he will respond but something needs to be done.  He is either sleeping all the time or moving terribly.  There is talk of home on Thursday 17th April so lets hope things stabilise a bit more.

Thursday 17th April

Tonight we are at home.  We left hospital this morning after 5 weeks in hospital.  We are hoping we can stay at home now.  Tomorrw our community nurse is coming.  She will be able to do most things at home so as long as Seth stays pretty stable we are confident we will have some quality time at home together.

Wednesday 23rd April

Wow!  An achievement for us.  We hve managed to be at home for 6 days.  The most amount of time since the beginning of January!  Our community nurse Sheena is great.  She is supporting us at home and is always on the other end of the phone.  Sleep is minimal, Seth is waking every 2 hrs.  Daytime isn't too bad but it is really difficult when Seth is so unsettled.  Bailey is being such a great big brother, he loves Seth so much and is being so lovely with him. 

Seth is starting to take less and less milk.  His big feed that he has through his feeding pump at 7pm was causing him discomfort last night so we had to stop it early.  Today he has had two awful nappies and has been so uncomfortable when his milk is going through.  I had to stop it after only 76 mls.

Spoke to Sheena.  We are just keeping an eye on his intake to make sure he stays hydrated.

Saturday 26th April

Over the last few days Seth has taken less and less fluid.  He doesn't want anything.  Water or milk just make him so uncomfortable.  He is starting to be very dry and isn't having wet nappies.  I spoke to Oxford as Sheena is off duty at the weekend.  They said for me to bring him in.  Well it is saturday evening and we have been admitted again!  Tried to get some fluids into him but anything that goes onto his tube makes him so uncomfortable and sad.  He can't cry (another skill he has lost) but makes a whining noise when he is in pain.  It is awful.  Our poor baby just isn't getting a break.  When is he going to get a few weeks of being stable?

Sunday 27th April

Seth ended up on IV fluids through the night and is still on them today.  Will be on them for the next couple of days probably.  Also to add to the feeding problems, he has started having new stiff body spams today.  Another EEG is being arranged for tomorrow.

 Friday 2nd May

After speaking to the gastroenterology team and the neurology team we have all agreed Seth needs continuous feeds.  This way he will get the quantity of milk but very slowly so his body can cope with it.  After lots of begging they have agreed to let us go home for the bank holiday weekend and see how we get on.  I have been in touch with Sheena so she is prepared for us to be at home.  The hospital have even agreed that it is ok to go on holiday for a week in this country.  We are going to book something as soon as we go home.  His fluid intake is not great and milk strength is only half but things will take time.  Dietician will work closely with us at home if need be.  The doctors are really supporting us being at home with the help of the community team.

 Saturday 10th May

We have arrived in Suffolk.  The weather is beautiful, the cottage is gorgeous and we are going to enjoy a family holiday just for the four of us.  Seth has a bit of a cold but nothing too bad.  I have Sheena's number just in case but with this lovely weather I think it will clear up.  Bailey is so excited to be on holiday.  Seth wont be able to do anything as his development is non existant and he is sleeping 20 hrs out of 24 but it is so nice to have him with us and not in hospital.

Sunday 11th May

 We have had a fantastic day on the beach.  Seth slept on our laps all day though.  Nothing will wake him but it was nice to have him on the beach and for him to feel sand in his hands.  Daddy is really happy today too as Fulham have escaped relegation from the premiership!!!!!

Tonight Seth is struggling with his secreations.  He is coughing all the time and is full of mucus.  Think it will be an unsettled night.

Tuesday 13th May

 Well after sunday night and all day yesterday we called Sheena and asked her advice.  She said we should take him to the nearest hospital.  We are going now so will update later.  My poor baby boy.  Hopefully they can suction him properly and then let us go home to enjoy the rest of our holiday.

Well it is tuesday evening and Seth has been admitted.  They did a lumbar puncture and bloods straight away to rule out anything nasty.  He has had a chest X ray and he has a chest infection.  No wonder he has been struggling.  He is on oxygen as he really is suffering and needs suctioning every 30 mins or so.  Bless him.  Poor Ben and Bailey, they have gone back to the cottage to try and get some sleep.  I have told Ben to still do things with Bailey and just visit later on in the day.  Someone needs to get something out of this week!!

I spoke to The registrar at Oxford today whilst on the ward and they have told us they have a diagnosis.  They are completely shocked as they didn't think this would come back showing anything.  Seth has ARX.  A very very rare X linked genetic disorder.  The mutation he has  never been seen before so they dont know what to expect.  We have been booked in for an appointment with Dr Jayawant next wednesday once we are home.  Not sure how we feel tonight.  Confused, scared, shocked are a few words that spring to mind.

Saturday 17th May

Well we are home.  We arrived last night after the doctors agreed to let us home.  Seth's breathing is better and he is managing ok without oxygen but he still needs suctioning quite a lot.  He doesn't have the energy to cough so we are having to help him.  I spoke to Sheena yesterday on the phone and she and Gill the other community nurse have decided Seth should be given 24/7 call out.  This means we can get hold of them as and when we need them.

Sheena came today to see how Seth is doing after us being away.  She hasn't seen him for 9 days and she thought he had changed a huge amount.  He woke up this morning with a very puffy face, yellow skin and very very sleepy.  He hasn't been awake really for a good few days.  Sheena said she would come tomorrow but I said we would be fine and I would call if we needed her.  She said she would call in the evening.

Wednesday cant come quick enough.  We just dont know whether we are coming or going.  Everything we read about ARX says nothing about it being a degenerative disease.  We dont know what to think now.

Sunday 18th May

Seth is sleeping all the time.  We just cant wake him up.  He looks worse today.  family have been round and they can't believe how much he has changed.  I am so worried.  Seth seems to be getting worse by the day but I am determined not to call Sheena.  She is coming tomorrow so I am sure we can wait.  He isn't needing any sedation as he is just too sleepy.  My poor baby, he is so poorly.  Maybe it is the medication he is on.  Maybe it is just too much for him.  At least that is what we are hoping it is.

Monday 19th May

We are devestated.  Sheena has been today and she brought Jane, our Iann Rennie Hospice at home nurse with her.  She was really nice.  Sheena spent the afternoon with us and talked to us about what she thought is happening.  I trust her completely but when I said to her 'is this the next stage' and she said she thinks so.  I couldn't get my head round her answer.  Seth has been freezing cold today, puffy, non responsive.  His pupils are fixed and he is sleeping all the time.  Sheena spoke to Oxford and they wanted to admit him but they have no beds until tomorrow.  Sheena left at about 6pm and said she would call later.  I have just spoken to her and have been very emotional.  Part of me wants to take Seth to hospital tomorrow but I am scared we wont get him home again.  The other part of me wants to see nobody and just keep him here with us.  I spoke honestly with Sheena and we agreed that Seth would be ok at home with her full support.  We are going on wednesday anyway so we shall see what they say then.  I was convinced it was the amount of medicines Seth is on but the consultants have said no it isn't.  I think I am fighting admitting what is happening.  Please someone slow this process down.  I am not ready to say good bye to our baby boy yet.

Saturday 24th May

This past week has been a nightmare.  the consultants on wednesday confirmed everything Sheena had said to us.  We ended up back at Oxford on Thursday and Friday for another MRI and EEG.  The MRI results showed sever brain atrophy.  Dr Jayawant can't believe the rapidness of Seth's condition.  Thursday and Friday we were busy at the hospital.  It was emotional leaving as we talked with doctors and agreed to with draw all treatment as Seth is being pumped full of medicines and they are not doing anything.  We talked in length with Dr Jayawant and agreed a DO NOT RESUSITATE form was the best option.  Keeping Seth on a ventilator will only prolong his life, not make him better or have a good quality of life.  We know it is the right decision but it makes us feel so terrible, like ARX is beating us and controlling everything we should be able to control.  It is taking our baby and we cant do anything about it.

Seth has been choking lots today and having apnea attacks afterwards.  He has thick thrush on his tongue and his mouth is so dry his lips are cracking.  He still isn't complaining though.  He is so good.  His feeding is so minimal, he is a big baby but we can feel the weight he has lost.  He is wasting away in front of us.

Thursday 5th June

Things have been pretty similar the last week or so.  His milk intake is much less, in fact yesterday he was sleeping and the milk was going through his tube into his tummy, but instead of absorbing it, it just poured out of his mouth.  Today he has had a total of 7mls of milk plus 10 mls of water.

Saturday 7th June

Things are not good.  Seth is not feeding at all now.  After lots of disscussions we have decided that this is Seth's way of telling us he has had enough.  His little body just can't take much more.  I am not sleeping though as I just feel so guilty.  Mummy's should feed their baby's and I cant.  His body wont allow him to have anything.  All I want to do is cry.  I want someone to come and make the decisions for us, it is just too hard.  Seth is also becoming very agitated.  He cant sleep, and his movements are getting worse.  Oxford have prescribed a higher dose of diazapam on a regular basis to try and help.  It never helps usually but we have to give it a chance.  How long is this going to take.  Our poor baby is suffering but we cant bare to let go yet.

Tuesday 10th June

Well after a very unsettled night our GP has been round and says she will talk to GT ormand Street and see what else we can give him.  He really is not good.  His movements are bad and he just cant sleep.  He is being so good though. He doesn't complain and he just lays there taking whatever happens.  My heart is breaking and I have no control over anything that is happening.  My beautiful baby boy is slipping away in front of our eyes.

The GP  and Sheena have been round and they have talked to us about fitting Seth with a syringe driver.  A small needle fitted under the surface of his skin.  It is attached to a small pump that gives strong medicines over a 24 hr period.  It also has a boost button so we can top him up if he needs it.  He has been started on Midazolam  to see if that helps him.

It is now 12.30am and we have been awake with Seth all day.  The midazolam isn't touching him.  He is having 3 boosts an hour and still no change.  I think we are in for an unsettled night.

Wednesday 11th June

Well another night of no sleep.  In the end I gave him his normal sedation medication as well which gave him an hour of sleep but I think he is hurting.  His little body keeps tensing and his fingers grip me so tightly.  I need to speak to the GP about this.  She is coming later with Sheena.

Managed to get 10mls of water into him but that is nothing really.  I am just doing what I can really.  Still feel so awful that he isn't having any milk.

Sheena came this afternoon after we had spoken to the GP and they have upped the Midazolam by alot.  The doctor said she is worried she might have given him too much and he might completely zonk out but she said to give it a go and she can always reduce it tomorrow.

We went to visit a friend, Bailey has been so good today.  We are so worried but getting out of the house for a while was good.  We are now 9.15pm and Seth is not happy.  The new medication isn't working, we are using more boosts than we should and he still can't sleep, plus his movements are terrible.  I am now going to give him some Chloral, his normal sedation to see if we can at least get an hour of sleep.

Well, its 10.30pm and no luck with anything.  He is wide awake, moving terribly and very distessed.  I have just rung Sheena and she is on her way.

Thursday 12th June

What an awful night.  Sheena arrived, she spoke to Helen House Hospice for advice.  They advised to start him on Morphine.  Sheena called Gill to come and help administer the new medication as it has to be done with two nurses.  Gill arrived and they set everything up whilst we waited for the on call doctor to come and prescribe the morphine.  By the time everything was set up it was 3am.  Sheena and Gill went home and Seth, Ben and I tried to get some sleep.  Well it is now 7am in the morning and we have had no sleep since monday.  Poor Seth, he just isn't getting any respite from this.  I have been boosting his pump every 15 minutes but nothing is working.

I have been to hospital today to have my bloods taken to test me as a carrier for ARX.  Whilst we were at the hospital I called into see Gill (our other community nurse) and she noticed Seth's eye was looking much worse.  We went onto the ward and the registrar gave me a prescription for anti biotic cream.  Everything is beginning to shut down, and his body just can't fight off any little thing now.  He is also starting to have more apnea attacks.  His breathing is starting to be affected now.  I am really scared.

Sheena and our GP came this afternoon to re asses the situation.  Things are changing so rapidly Seth has to be seen every few hours really.  

Saturday 14th June

After more sleepless nights things are not good.  This morning we were really worried about Seth's breathing so we called sheen.  She came straight over and said to me and Ben that the best things we could do was to cuddle up with Seth in bed and just be close to him.  Bailey is with grandparents today so Ben and I can be with seth totally.  His movements are still really bad and we just can't boost his driver anymore.  Our Gp has been this morning and she has upped his morphine by 50% and has started another syringe driver with phenabarbartone.  He now has a driver in both legs bless him.  The dosages are so high now that he is very sleepy with intermitent movements.  I feel so helpless tonight.  Our baby is dying in front of our eyes and all we can do is watch.  His little body is hurting, he hates being handled and snuggling up to him is the best we can do.  My heart is breaking, his little face is trying to cry but no sound is coming out.  I don't know if he cant cry because he has no energy or whether there just isn't any sound left.  His body is failing him and I can't do anything.  As his mummy I should be able to make him better but nothing is going to save him.

Sunday 15th June

Seth has had a settled night as he is on such high amounts of morphine but we are still having to boost him a lot so Gill has been out a few times this morning already.  Bailey is with grandparents again so Ben and I are just spending whatever time he has left close to him.  The nurses have agreed we can take him out for a short walk.  The sun is shining and i want him to feel it on his face.  His body is so hot that he is just in a nappy but they have said just cover him with a light sheet as anything more will hurt his fragile body.

We have been out for a walk, it was lovely to be 'normal' for an hour.  Things are not good though.  we had to call Gill out as Seth's breathing has changed.  He is starting to rattle and is breathing is laboured.  She came about an hour ago and told us that Seth only has at the most 48hrs to live.  Our precious baby is slipping away and I feel so helpless.  Why Seth, why our precious baby boy?  He doesn't deserve this, he is only 9 mths old.

It is 11pm and Seth has had a rough afternoon.  The nurses were here all afternoon and we had family here to see him.  His lungs are thick with mucus and he is struggling to take every breath.  He has been suctioned every 20 minutes to try and relieve things but it is taking hold of him gradually.  We are now going to take him to bed and try and get some rest.  Bailey is home and tomorrow we are going to spend the day, just the four of us.  We need some time with our sons, to say goodbye and be together.

Monday 16th June

We are heart broken.  Seth has lost his fight.  Our precious son died this morning at around 6am.  He had a settled night but his small, fragile body could not do it anymore.   Bailey came into our bedroom to see and kiss his brother goodbye.  He knows that Seth is going to heaven but I dont think he really understands what is going on.  He has gone with Bens parents so we can be with seth and not have to worry about Bailey.  Sheena, Gill and Jane came straight over this morning to be with us.  Our GP came and gave us an official death certificate.  I can't believe I am writing this about our life, our son, our baby boy.  This surely isn't happening.  Bens mum came and said goodbye when she came to pick Bailey up.  My parents came round today too.  They came to be here for us but to see Seth one more time. 

We are going to keep seth here for as long as possible.  he will definately spend tonight here with us.  We have bathed him, washed his hair and dressed him in his best baby gro.   We love you sweet heart.  You truely were the bravest little boy ever.  Mummy and daddy love you. XXX