I dont do heat very well...that is to say I dont do the humid swealtering heat like we have at the moment.Serpahina is very much like her mummy and doesnt do it either,this morning she has been crying all morning and has just dropped off to sleep.The only thing which made her smile was stroking May mei who is one of two 'new additions' to our piggy family :).PIGS! I hear you cry...nope not the big fat pink snouted variety (although I would quite like one of those one day lol)...much cuter smaller furry Guinea pigs (or Cavies to give them their proper name).
I have to say I have fallen in love...it started many years ago with my first piggy....Pookie who was a not show standard by any means Himalayan-type piggy and was my first love. He lived until he was five along with Gingernut who was an orange and white coronet-type.we had a few others along the way but when Pookie died and the others got wiped out by a nasty infection despite vetinary treatment I didnt have any more...until Eve my 6yr old wanted a guinea pig to replace a very bad experience with Hamsters (something I never plan to repeat!)...she has a lovely mongie pig who she has named Muppet lol but who is her pride and joy (he can count apparently :-) !!)
Well following on from that I decided to do a bit of googling and came accross 'pedigree' piggies...inparticular Texel and Merino pigs . Well I was sunk wasnt I (do i need to tell you what came next?).I found a lovely breeder and my piggy collection began with a beautiful piggy boy (Texel/ Merino) called Coco Buttons who is the most gorgeous chocolate colour,very hairy and looks,when He moves,kind of like a walking toupee lol!,with him came Princess Tigerlily...unfortunately she got lonely and so 3 rex piggies came to stay too (but they were too cute to leave even though i only went out for one!).
Then yesterday Maymei and Princess Stella (as in the drink ) came to live with us. Now this very enthusiastic ramble lol is actually going somewhere lol....Seraphina,as you know has a cortical visual impairment so her vision is ...well pretty poor on some days.she also has Sensory processing disorder which means (in her case) that she is terrified of touching soft things and certain other textures.Well not only have the pggie additions been cute theraputic for me BUT they have also been an absolute blessing for little Seraphina.
Little did I know that we would get to the stage where I am convinced that she sees them scuttling about when I have them indoors...but she also turns to look at them and PUTS HER HAND OUT TO STROKE THEM!!!! I couldnt believe it the first time she did that.Her favourite seems to be Coco Buttons at the moment (Mr Toupee) but she also strokes the others too and May Mei made her smile this morning too when she has been grumpy otherwise.
Im now planning my next new additions...including a Himalayan,who I am sure will remind me of my Pookie.Im thinking that the contrast in the black and white of a Himalayan will be more visable (especially on bad days) to Seraphina.
Well the days are ticking away now...not long till Seraph's next surgery.She has her pre-op on the 13th July and Op on the 15th.Im already getting nervous and wondering how she will cope with the anaesthetic this time (hopefully she wont need ICU).I know its for the best but you never ever get used to them going into theatre.
Also on Saturday we are at the Childrens with Lydia...we find out what the growth on her spinal cord is :(...Im praying so hard that it isnt anything Nasty (Im sure you know what I mean).I will be glad when both are all over.
Seraphina's wish...her page/Cause on facebook (http://apps.facebook.com/causes/304589?m=3f1cca43) is doing well with 445 members so far and £313.24 raised out of a total of £3000 needed to fund her wheelchair and swing.there are also two events whaich are taking/have taken place (have yet to know the total raised from the cake sale).Hopefully we will raise our target before long and Seraphina will be in a more comfortable seat.
Well I better go and get some housework done (cuddle some piggies)...a womans work is never done and all that :o)
Tuesday, 30 June 2009
Tuesday, 23 June 2009
June update
So much has happened over the last few weeks its hard to remember it all,life has been and still is a bit of a whirlwind.
We have had a bit of an endless stream of appointments on a day to day basis first Doctors then therapists so much so that it had begun to feel like 'real' life was disappearing into the abyss somewhere.So my dear husband,who could see I was starting to struggle with juggling so many appointments (I MEAN 3 hospitals in one day!) contacted our Keyworker andexplained that things were getting more than a bit silly and she said she would see what she could do about rearranging things.
I have since had a few 'free' days and really enjoyed taking little Seri to the park and also booking in for a regular Mums and tots group..its so nice doing 'normal' things with her.She loved the mums and tots especially as its set in a lovely big room....although after 15 mins she was totally whacked out and fell asleep in her wheelchair :)
Lydia finally has her appointment through to see the Neurosurgeons about the growth on her spinal cord...3rd July,so will see what is said then.
Samuel is keeping pretty well overall since being started on Montelukast the only bother is his iron level is still low at 9 so still on iron tablets and folic acid.
The biggest news has been regarding our darling Seraphina..
First of all we had her Orthopaedic review...her diagnosis was changed to Quadriplegic Spastic cerebral palsy.she has also got contractures in her wrists and scolliosis (curvature of the spine) plus a problem with one of her hips.This as you can imagine was quite a lot to take in.
She has been booked for surgery on 15th July...botox in her arms and legs plus examination under anaesthetic of all her joints/back and both hips.we go for the pre-op on the 13th- just got to keep her well in the meantime.
Then last Saturday we went to the Childrens hospital to see the Consultant Neurologist.
He was a lovely man and very understanding of our concerns about Seraphina.we had taken both a development report and videos of Seraphina which show the developmental regression which is taking place with her.It started off by her losing mental skills eg once she could say Dada with meaning along with Mama,bye bye,hello and wowa (flower).now she says nothing...
She avoids eye contact,has developed a habit of grinding her teeth constantly,self harms,rocks backwards and forwards in her chair and flapps her hands a lot.
Occasionally you get 'glimpses' of Seraphina but more often than not now she is in her own little world where it seems we cannot follow.
Now it seems she is losing some physical skills..she used to be able to hold one thing in each hand and bang them together...now she holds one thing,you give her another and she drops the first.
The Neurologist listened to us and carefuly examined Seraphina,when he spoke it was as if the whole world stopped dead 'I think your daughter could have something called rett syndrome' he said 'unfortunately it is a life limiting disease due to the range of complications and variables within it'.We were both struck dumb and sat there like a couple of stooges.He then went on to say that he thought it was a good idea to have another MRI scan and also Genetic tests for Retts.he also said the only other thing it could be in his opinion was severe autism and went on to explain in terms I couldnt understand take in or even remember what he would expect to see on an MRI...the only word I can remember was atrophy (which doesnt really tell you much).
So now we wait......
we went home and both promised ourselves we wouldnt google anything to do with rett syndrome... went home,david in the living room and me in the dining room....
.....and then called each other in to see what we had been watching on 'you tube' and other sites regarding rett and 'rett angels' who had already passed.When we found out it was also called the 'silent angel disease' we stopped looking.
Now I can think of so many things I want to do with Seraphina,so much I want to show her before she slips away completely into her own world and there suddenly seems to be so little time.......
We have been told Seraphina needs a new wheelchair,one with a 'dynamic back' which will accomodate her rocking and extensor spasms,that can be built up one side to try and correct her scolliosis and with more padding to make it more comfortable on her hip....only the dear NHS doesnt fund them so the OT says its down to us.I have contascted numerous charities but the average wait is 8- 12 months which seems such an age, and thats if they agree to fund.
So, we have set up a facebook 'cause' for her with a link to this blog.she has her own email address and her own paypal account,Im praying that some money will be raised by doing this as it seems our only option..other than the newspapers ,which we are considering as a next step.for now we will wait and see.......
We have had a bit of an endless stream of appointments on a day to day basis first Doctors then therapists so much so that it had begun to feel like 'real' life was disappearing into the abyss somewhere.So my dear husband,who could see I was starting to struggle with juggling so many appointments (I MEAN 3 hospitals in one day!) contacted our Keyworker andexplained that things were getting more than a bit silly and she said she would see what she could do about rearranging things.
I have since had a few 'free' days and really enjoyed taking little Seri to the park and also booking in for a regular Mums and tots group..its so nice doing 'normal' things with her.She loved the mums and tots especially as its set in a lovely big room....although after 15 mins she was totally whacked out and fell asleep in her wheelchair :)
Lydia finally has her appointment through to see the Neurosurgeons about the growth on her spinal cord...3rd July,so will see what is said then.
Samuel is keeping pretty well overall since being started on Montelukast the only bother is his iron level is still low at 9 so still on iron tablets and folic acid.
The biggest news has been regarding our darling Seraphina..
First of all we had her Orthopaedic review...her diagnosis was changed to Quadriplegic Spastic cerebral palsy.she has also got contractures in her wrists and scolliosis (curvature of the spine) plus a problem with one of her hips.This as you can imagine was quite a lot to take in.
She has been booked for surgery on 15th July...botox in her arms and legs plus examination under anaesthetic of all her joints/back and both hips.we go for the pre-op on the 13th- just got to keep her well in the meantime.
Then last Saturday we went to the Childrens hospital to see the Consultant Neurologist.
He was a lovely man and very understanding of our concerns about Seraphina.we had taken both a development report and videos of Seraphina which show the developmental regression which is taking place with her.It started off by her losing mental skills eg once she could say Dada with meaning along with Mama,bye bye,hello and wowa (flower).now she says nothing...
She avoids eye contact,has developed a habit of grinding her teeth constantly,self harms,rocks backwards and forwards in her chair and flapps her hands a lot.
Occasionally you get 'glimpses' of Seraphina but more often than not now she is in her own little world where it seems we cannot follow.
Now it seems she is losing some physical skills..she used to be able to hold one thing in each hand and bang them together...now she holds one thing,you give her another and she drops the first.
The Neurologist listened to us and carefuly examined Seraphina,when he spoke it was as if the whole world stopped dead 'I think your daughter could have something called rett syndrome' he said 'unfortunately it is a life limiting disease due to the range of complications and variables within it'.We were both struck dumb and sat there like a couple of stooges.He then went on to say that he thought it was a good idea to have another MRI scan and also Genetic tests for Retts.he also said the only other thing it could be in his opinion was severe autism and went on to explain in terms I couldnt understand take in or even remember what he would expect to see on an MRI...the only word I can remember was atrophy (which doesnt really tell you much).
So now we wait......
we went home and both promised ourselves we wouldnt google anything to do with rett syndrome... went home,david in the living room and me in the dining room....
.....and then called each other in to see what we had been watching on 'you tube' and other sites regarding rett and 'rett angels' who had already passed.When we found out it was also called the 'silent angel disease' we stopped looking.
Now I can think of so many things I want to do with Seraphina,so much I want to show her before she slips away completely into her own world and there suddenly seems to be so little time.......
We have been told Seraphina needs a new wheelchair,one with a 'dynamic back' which will accomodate her rocking and extensor spasms,that can be built up one side to try and correct her scolliosis and with more padding to make it more comfortable on her hip....only the dear NHS doesnt fund them so the OT says its down to us.I have contascted numerous charities but the average wait is 8- 12 months which seems such an age, and thats if they agree to fund.
So, we have set up a facebook 'cause' for her with a link to this blog.she has her own email address and her own paypal account,Im praying that some money will be raised by doing this as it seems our only option..other than the newspapers ,which we are considering as a next step.for now we will wait and see.......
Friday, 24 April 2009
24/4/09
Above pic of an apprehensive Seraphina in her new standing frame...shes not sure about it!Well we had the multidisciplinary meeting..lots of people couldnt make it as it was in the Easter holidays but the physio,OT,Com nurse health visitor were there.DFG was discussed a lot (Disabled fasclity Grant) the general consensus of opinion by people other than the OT was that Seraphina needs a downstairs bathroom and bedroom however the OT needs more 'proof'.She is going to assess her again at the bewgining of July and if she is stll the same then she will look into applying for one for her....of course now Seraphina has started to take a few steps on her own so potentially that could be used as a reason to stall for a bit longer! who knows.
My personal feeling is that it would make SOO much difference to her quality of life...beng able to have a bath safely would be a big one.It so hard carrying her now as she is a big girl with lots of uncontrolled movement.my back hurts more often than not now and it would be nice to have way of moving her safely.plus she would have her own bedroom instead of the living room.At the moment we are waiting for her bed to be delivered and so have thrown our front room furniture away to make space for it.I dont know whether her local Paed would be able to put some pressure on Ot to let her have a DFG...dont really know her well enough yet to feel Ican ask.
The real shocker this month has been Little Lydias MRI results...apparently she has a growth on her spinal cord.She is being referred to Neurosurgery in Birmingham Childrens Hospital for this but as yet an appointment hasnt come through.To say I was devastated is an understatement...but we will get through this as a family like we always do.Cant help wishing for a break though.This morning I waved her off on a trip with the school to Kingswood activity centre where she will be absailing/caving/quadbiking etc etc she was so excited lol! Im going to miss her so much...what a soppy Mum I am.
We finally were able to order Seri's car seat 'yay!' so hopefully we should have that in 2-4 weeks.That will be a great help as it has a turntable on the base so we can get her in and out of the car more easily.
Seraphina is into Peppa pig big style at the moment..its funny to hear her laugh when Peppa comes on...will have to look into finding some Peppa toys I think :) the other character she seems to like is Dora the Explorer:) I guess its the bright colours.
well I'm off to get a cuppa :o)
Tuesday, 7 April 2009
Where are we now....
Once again its been quite a while since I have updated this blog,maybe I should just reconcile myself to the fact that it will get updated but ont always regularly :o).
Quite a lot has happened again...She got a diagnosis of cortical Visual impairment and is apparently borderline for being registered blind.She had a hearing test and has got to go back for a further test as they think she has an Auditory nerve impairment too.
We started doing Biomechanical rehabilitation work with her...patterning and so forth which we believe is helping her.She also now has suppliments of probiotics,fish oils and blueberry extract from a company called Biocare which we hope will help her brain development.
We went up to Sheffield to have her sleep study repeated but it was abandoned at 2am because of noise from Sheffield Uni students disco grrr...so we have to go back again soon to try again with that one.
She had seemed to make some progress trying to say a word 'flower' but then as usual her brain wiped it and she no longer does that which is sad.
We had a long appt with her new Neuro paed Consultant...who incidentally is absolutely lovely..........and she thinks that the damage to her brain is quite widespread and she could well have processing problems which would mean that things were 'wiped' from her brain.she was asking a lot about the other children (trying to build up a family tree) and her comment when seeing what other problems the children have is'Im quite interested in your family tree now I've seen it...........its quite impressive how unlucky you have been,in that people usually GET a break!' (no kidding.....and we have a medicine cupboard the size of Wales to go with it!)
We also asked her honestly about what her prognosis is likely to be,particularly what her life will be like/whether she will be able to look after herself when we are no longer around ..........the answer was not really what we wanted to hear although she put it in the nicest possible way.Her mental progress is slipping further and further behind and she is showing 'autistic traits'....she 'doesnt need' us,avoids eye contact,is no at all demonstrative,doesnt like being touched ...the list goes on.The Consultant feels that she will always be 'quite slow at best' and will 'always need quite a lot of support with life'.Its so difficult as sometimes I get excited that shes doing something,that shes trying to 'connect' with me only for it to be wiped and once again I lose my little girl and she stares blankly into space.
On a positive note a lovely lady from my antenatal club Hazel,who ha a very talented mum ( already made Seri a lovely taggie a while back) is maing Seri a blanket for her new bed with her name and taggies along the top :o).I am so so pleased and Seri will love it.Hoping her bed wont be too long in coming now.
We have also managed to get funding for Seraphinas new car seat!,they asked what we could contribute and then came back to us offering the lot as they said we had so much to deal with,so so pleased that we dont have to worry about trying to find the nearly £900 to pay for it,special needs equipment is SO expensive..this should last till shes about 11 though so will be well used.
On Thursday this week we have Seraphinas first multidisciplinary meeting,Im dreading it to be honest as so many proffessionals in one room is my idea of hell and I know I will find it quite intimidating.On the other hand only by doing this will we get a united 'way forward' for Seri.
Well Im going to leave it here as I am so tired recently..
Quite a lot has happened again...She got a diagnosis of cortical Visual impairment and is apparently borderline for being registered blind.She had a hearing test and has got to go back for a further test as they think she has an Auditory nerve impairment too.
We started doing Biomechanical rehabilitation work with her...patterning and so forth which we believe is helping her.She also now has suppliments of probiotics,fish oils and blueberry extract from a company called Biocare which we hope will help her brain development.
We went up to Sheffield to have her sleep study repeated but it was abandoned at 2am because of noise from Sheffield Uni students disco grrr...so we have to go back again soon to try again with that one.
She had seemed to make some progress trying to say a word 'flower' but then as usual her brain wiped it and she no longer does that which is sad.
We had a long appt with her new Neuro paed Consultant...who incidentally is absolutely lovely..........and she thinks that the damage to her brain is quite widespread and she could well have processing problems which would mean that things were 'wiped' from her brain.she was asking a lot about the other children (trying to build up a family tree) and her comment when seeing what other problems the children have is'Im quite interested in your family tree now I've seen it...........its quite impressive how unlucky you have been,in that people usually GET a break!' (no kidding.....and we have a medicine cupboard the size of Wales to go with it!)
We also asked her honestly about what her prognosis is likely to be,particularly what her life will be like/whether she will be able to look after herself when we are no longer around ..........the answer was not really what we wanted to hear although she put it in the nicest possible way.Her mental progress is slipping further and further behind and she is showing 'autistic traits'....she 'doesnt need' us,avoids eye contact,is no at all demonstrative,doesnt like being touched ...the list goes on.The Consultant feels that she will always be 'quite slow at best' and will 'always need quite a lot of support with life'.Its so difficult as sometimes I get excited that shes doing something,that shes trying to 'connect' with me only for it to be wiped and once again I lose my little girl and she stares blankly into space.
On a positive note a lovely lady from my antenatal club Hazel,who ha a very talented mum ( already made Seri a lovely taggie a while back) is maing Seri a blanket for her new bed with her name and taggies along the top :o).I am so so pleased and Seri will love it.Hoping her bed wont be too long in coming now.
We have also managed to get funding for Seraphinas new car seat!,they asked what we could contribute and then came back to us offering the lot as they said we had so much to deal with,so so pleased that we dont have to worry about trying to find the nearly £900 to pay for it,special needs equipment is SO expensive..this should last till shes about 11 though so will be well used.
On Thursday this week we have Seraphinas first multidisciplinary meeting,Im dreading it to be honest as so many proffessionals in one room is my idea of hell and I know I will find it quite intimidating.On the other hand only by doing this will we get a united 'way forward' for Seri.
Well Im going to leave it here as I am so tired recently..
Tuesday, 10 March 2009
worn out and hacked off!
Its been a really difficult few weeks here with one thing and another.Seraphina ended up in hopsital for 10 days as she vomited through her wrap for the first time and aspirated :-( 24 hrs later she had a temp,48 hours later it was higher and by the monday she was really poorly so i took her to the GP who put her on antibiotics.Unfortunately they didnt seem to do the trick and by the time our clinical genetics appt came round she was really not well at all.I took her to the appt but she had a couple of nasty choking episodes whilst there and the Gebeticist had to hold her whilst I suctioned her out.We felt the best thing was to go straight round to A&E and it was there she was diagnosed by the consultant to have aspiration pneumonia,from there she was blue lighted to the nearest bigger hospital where we stayed in.She had IV antibiotics but the cannula went twice as her veins are so bad and so after 48 hrs she was dropped to normal tube antibiotics.Unfortuntely then her o2 requirement kept going up and she ended up at her worst on 10 litres plus 10 puffs of salbutamol every 2 hours plus saline nebs and prednisolone!
It was hard as she developed dumping again due to the antibiotics but no-one knew what to do,I told the Docs we normally used Loperimide for this.The nurses tried to give her normal Movicol medicine and Domperidone as well as Loperimide!!!I tried to explain that she needed no motility agent or laxative when she ALREADY had the runs and I was told that they would have to document me regularly refusing Seraphinas medication!!(exasperating or what!)
I then had this nasty consultant come round and ask why she was on so much o2 and medicine insinuating that I was somehow the cause of her being unwell and giving me the third degree!
This upset me so so much and after he had gone I just burst into tears,I couldnt believe that they could think that.He clearly had no idea about Seraphina and it seemed to be a case of..'if we cant explain it blame the parents'
I have since spoken to Seraphinas key worker about this and hopefully she will be able to liase with her Paed to prevent this happening again.
Meanwhilewe got discharged with Seraphina only able to tolerate dioralyte and the weekend with her can only be discribed as a nightmare.We tried feeding her with the weakest concentration of Neocate at only 50mls per hour but she was pooing so much that we were worried about her dehydrating so increased the volume to 70 mls per hour....result...she was still pooing and we had the added joy of neocate dripping out of her already quite raw and baggy jejunostomy stoma!!!aaaaggghhhh! so we had to turn it back down again to 50 mls per hour and pray that with the loperimide it would eventually stop.
Thankfully it did stop and with bathing her stoma several times a day and putting maxitrol on it half the time and the other half padding it out with Mephilex it seems to have calmed down a lot.We have also been upping the concentration of feed very slowly each day so now she is on half strength and normal volume of 60mls per hour so progressing well.
o2 wise she is still requiring double the usual amount when asleep (1 litre) but once again she is heading in thr right direction and she has long term antibiotics now to try and protect her chest a bit more and inhalers too.
How do I feel after all of this.......exhausted,disappointed, gutted that once again we as parents have had the finger pointed at us for our daughters problems..even though she has a diagnosis for goodness sake which comes with many different complications or complex needs as the medical professionals like to call it.
Disappointed that a child who is clearly not well was discharged...bit sad she was discharged not tolerating any feed,leaky sore stoma and raised o2 requirement??Thankfully we know what to do....but what if we didnt?
Anyway at least she is better now.Yesterday we were in Sheffield and she got signed off from ENT yay! one Consultant down lol :-).He has given us an open appointment so we can see him again at any time but otherwise he is very pleased with her.Then we saw her surgeon who was disappointed that she had vomited again but ,like us, was happy just to wait and see how things progressed.However he did mention in surgical steps that could be taken a re-do of the fundo as well as the oesogastric separation which we were please about as the Gastroenterologist had said that it wouldnt be done again after she had had it done 3 times already.
Nevertheless we hope that it doesnt come to that.We appreciate that fundos dont last for ever but we hope it will be a long LONG time down the line before we have to consider that..if ever.
Today we went to get Seraphinas new splints and have her shoes checked.We have waited since 5th Feb for her splints and so were really disappointed that when he tried them on they were miles too small!?! not sure how that happened as she had casts done beforehand so they have had to be sent back and wil be redone :( lets hope its not another month!.Shoes were the opposite story...they are miles too big and make her feet look ENORMOUS! so they have to re-order them in a smaller size :-( they were ordered before Christmas!!
Maybe my the summer she will have both splints AND shoes...now theres a novel idea *rolls eyes*
You may have picked up on my tired and slightly sarcastic tone...I think my views of the NHS have fallen quite a lot recently.I feel disappointed at the way disabled chidren are treated as a whole but even more so disabled children who seem to be treated as second class citizens because they can speak up for themselves.Whereas we,the parents,who fight every day for our children to be heard,to have the care they are entitled to and for medics to appreciate the complexity of our children...what do we get in return for our untiring determination???disbelief,accusation,red tape and weak excuses.
This example says it all really...
Seraphina doesnt always cry when she is in pain.When the pain is bad she grinds her teeth ...I can tell its pain when I look in her eyes and also because I know her.When she was at her poorliest she had paracetamol but still she was grinding her teeth and her eys told me she was suffering so I asked for some more pain relief for her.
The nurse came and ...asked her to tell them where it hurt!!! (she doesnt talk) then commented that she was quiet and not screaming the place down.I told them that she was grinding her teeth and that was a sign of pain where upon thwe nurse said 'oh my child grinds her teeth all the time..' and as an after thought added 'I'll ask'.
Needless to say no pain relief came dispite me reminding them as they said she seemed fine....
If SHE could have asked for it she would have got it but because she couldnt communicate to them she got nothing............
It was hard as she developed dumping again due to the antibiotics but no-one knew what to do,I told the Docs we normally used Loperimide for this.The nurses tried to give her normal Movicol medicine and Domperidone as well as Loperimide!!!I tried to explain that she needed no motility agent or laxative when she ALREADY had the runs and I was told that they would have to document me regularly refusing Seraphinas medication!!(exasperating or what!)
I then had this nasty consultant come round and ask why she was on so much o2 and medicine insinuating that I was somehow the cause of her being unwell and giving me the third degree!
This upset me so so much and after he had gone I just burst into tears,I couldnt believe that they could think that.He clearly had no idea about Seraphina and it seemed to be a case of..'if we cant explain it blame the parents'
I have since spoken to Seraphinas key worker about this and hopefully she will be able to liase with her Paed to prevent this happening again.
Meanwhilewe got discharged with Seraphina only able to tolerate dioralyte and the weekend with her can only be discribed as a nightmare.We tried feeding her with the weakest concentration of Neocate at only 50mls per hour but she was pooing so much that we were worried about her dehydrating so increased the volume to 70 mls per hour....result...she was still pooing and we had the added joy of neocate dripping out of her already quite raw and baggy jejunostomy stoma!!!aaaaggghhhh! so we had to turn it back down again to 50 mls per hour and pray that with the loperimide it would eventually stop.
Thankfully it did stop and with bathing her stoma several times a day and putting maxitrol on it half the time and the other half padding it out with Mephilex it seems to have calmed down a lot.We have also been upping the concentration of feed very slowly each day so now she is on half strength and normal volume of 60mls per hour so progressing well.
o2 wise she is still requiring double the usual amount when asleep (1 litre) but once again she is heading in thr right direction and she has long term antibiotics now to try and protect her chest a bit more and inhalers too.
How do I feel after all of this.......exhausted,disappointed, gutted that once again we as parents have had the finger pointed at us for our daughters problems..even though she has a diagnosis for goodness sake which comes with many different complications or complex needs as the medical professionals like to call it.
Disappointed that a child who is clearly not well was discharged...bit sad she was discharged not tolerating any feed,leaky sore stoma and raised o2 requirement??Thankfully we know what to do....but what if we didnt?
Anyway at least she is better now.Yesterday we were in Sheffield and she got signed off from ENT yay! one Consultant down lol :-).He has given us an open appointment so we can see him again at any time but otherwise he is very pleased with her.Then we saw her surgeon who was disappointed that she had vomited again but ,like us, was happy just to wait and see how things progressed.However he did mention in surgical steps that could be taken a re-do of the fundo as well as the oesogastric separation which we were please about as the Gastroenterologist had said that it wouldnt be done again after she had had it done 3 times already.
Nevertheless we hope that it doesnt come to that.We appreciate that fundos dont last for ever but we hope it will be a long LONG time down the line before we have to consider that..if ever.
Today we went to get Seraphinas new splints and have her shoes checked.We have waited since 5th Feb for her splints and so were really disappointed that when he tried them on they were miles too small!?! not sure how that happened as she had casts done beforehand so they have had to be sent back and wil be redone :( lets hope its not another month!.Shoes were the opposite story...they are miles too big and make her feet look ENORMOUS! so they have to re-order them in a smaller size :-( they were ordered before Christmas!!
Maybe my the summer she will have both splints AND shoes...now theres a novel idea *rolls eyes*
You may have picked up on my tired and slightly sarcastic tone...I think my views of the NHS have fallen quite a lot recently.I feel disappointed at the way disabled chidren are treated as a whole but even more so disabled children who seem to be treated as second class citizens because they can speak up for themselves.Whereas we,the parents,who fight every day for our children to be heard,to have the care they are entitled to and for medics to appreciate the complexity of our children...what do we get in return for our untiring determination???disbelief,accusation,red tape and weak excuses.
This example says it all really...
Seraphina doesnt always cry when she is in pain.When the pain is bad she grinds her teeth ...I can tell its pain when I look in her eyes and also because I know her.When she was at her poorliest she had paracetamol but still she was grinding her teeth and her eys told me she was suffering so I asked for some more pain relief for her.
The nurse came and ...asked her to tell them where it hurt!!! (she doesnt talk) then commented that she was quiet and not screaming the place down.I told them that she was grinding her teeth and that was a sign of pain where upon thwe nurse said 'oh my child grinds her teeth all the time..' and as an after thought added 'I'll ask'.
Needless to say no pain relief came dispite me reminding them as they said she seemed fine....
If SHE could have asked for it she would have got it but because she couldnt communicate to them she got nothing............
Saturday, 7 February 2009
Snowy update
Seraphina got her first glimpse of snow this week...couldnt take her out in it as shes poorly again :( but we bought some in and put it on the tray of her wheelchair,she just tentatively touched it for a while and then tried to eat it ROFL!,dont think she was impressed.
The big news for this week is ...Seraphina clapped!,came downstairs to find her in her chair clapping,you could see it was taking a lot of effort but she was so please with herself,especially when I cheered her.Also the Newlife Charity has agreed to fund the total cost for the bad that Seraphina needs,they have turned it around really quickly,when I had the interview I dont think they could believe how we were living and how little professional support we were getting.Now we have to take our living room and turn it into Seraphinas bedroom (however I have been told that they could try and provide us with a shed to put our furniture in!).We got turned down for a Disabled facilitys grant for the downstairs bedroom and bathroom she needs because our house is overcrowded and Seri could potentailly one day be able to crawl upstairs!!!
With all Seri's feeding equipment,standing frame,gait trainer and wheelchair theres not a lot of room for anything else.
Its going to be busy this Monday.In the morning we are in Birmingham Childrens hosptial for Electrodiagnostic testing on her eyes..basically we get to find out how bad her vision actually is and whether she has the potential for beter vision or whether it is actually a cortical problem.
In the afternoon she is at Exhall Grange having a joint assessment with the OT and Physio.Still havent got anywhere with speech and Language got the feeling they just dont want to know.Got fed up of leaving messages now.All I have heard back is to contact them when she can eat orally!...oh well thats fine then isnt it forget the fact that she cant communicate grrrr!
other appointments we have lined up is ....clinical genetics,ENT,sleep study,Opthalmology and surgeon...busy busy busy :-)
The big news for this week is ...Seraphina clapped!,came downstairs to find her in her chair clapping,you could see it was taking a lot of effort but she was so please with herself,especially when I cheered her.Also the Newlife Charity has agreed to fund the total cost for the bad that Seraphina needs,they have turned it around really quickly,when I had the interview I dont think they could believe how we were living and how little professional support we were getting.Now we have to take our living room and turn it into Seraphinas bedroom (however I have been told that they could try and provide us with a shed to put our furniture in!).We got turned down for a Disabled facilitys grant for the downstairs bedroom and bathroom she needs because our house is overcrowded and Seri could potentailly one day be able to crawl upstairs!!!
With all Seri's feeding equipment,standing frame,gait trainer and wheelchair theres not a lot of room for anything else.
Its going to be busy this Monday.In the morning we are in Birmingham Childrens hosptial for Electrodiagnostic testing on her eyes..basically we get to find out how bad her vision actually is and whether she has the potential for beter vision or whether it is actually a cortical problem.
In the afternoon she is at Exhall Grange having a joint assessment with the OT and Physio.Still havent got anywhere with speech and Language got the feeling they just dont want to know.Got fed up of leaving messages now.All I have heard back is to contact them when she can eat orally!...oh well thats fine then isnt it forget the fact that she cant communicate grrrr!
other appointments we have lined up is ....clinical genetics,ENT,sleep study,Opthalmology and surgeon...busy busy busy :-)
Wednesday, 28 January 2009
Time flies
I really must get better at updating this blog,life seems to be a bit of a whirlwind at the moment with so much going on.
First Seri, well she has now finally been seen by the 0-3 service (portage) after being on the waiting list for months.They have come out and done a full assessment basically physically she is at about 8-9 months and mentally about 3 months with hearing and understanding being of biggest concern.They gave me a copy of the assessment to take to my next Neuro appt as there are concerns that she has 'another learning disability such as autism'....well no surprise there then lol!...will wait and see what happens with that one.She has also had her EEG done at birmingham,dont know the full results yet but they have now started her on Diazepam twice daily to try and control the muscle spasms that she is still having despite being on the maximum dose of baclofen.I was concerned in case it made her zombie like or tired all the time......I neednt have been as it doesnt at all.I give her the last dose at 5pm and then she has baclofen at 8pm.Two nights in and she has slept throughboth nights! never ever has she slept through the night so I wonder now whether her restlesness was more to do with spasms....let the sleep continue!!!!! :-)
Samuel meanwhile has been put on Montelukast (singulair) to try and control his gut symptoms as his last test results showed that he is still anaemic and STILL testing positive for blood in his stools :-(.It has improved things re his runny poo and bad excema but he hardly eats anything at the moment and doesnt want to drink his milk either so i can see a downward trend in weight again,his ribs are showing and he seems very pale.School whacks him out and he falls asleep in his buggy most days on the way home.Dont have any magic answers,just carrying on till next appt in Feb.
Will end this post here as kids are mucking about upstairs instead of going to sleep...will leave with a lovely pic I took of Seri today...oh and the smudges on her face are wispa bar...she pinched mine and smeared it on her face,she didnt realise it was food...and yes I did pinch it back!! :-)
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