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............

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 :-)

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!! :-)

Just stuff really..

This week has gone in a bit of a blur....I've spent hours on google trying to find a 'cure' for Cerebral palsy...with no success obviously.I've read and read until I couldnt read any more about CP and still feel none the wiser.Ive even dreamt bout Cerebral palsy and physio appointments etc.
Sad I know but just wanted to find 'something' that would make it all better.I dont know how i feel right now.....alone,confused,grieving for the loss of hope for a 'normal child' one day.Trying to get my head around the fact that this is for life,its not a condition that will go away.

Also remembering too...something which made me feel a little better in some way.I had always wondered whether her horrible experience in Leicester had led to CP (she had some really close calls whilst on the vent...we are talking sats dropping to 19%!) I KNOW that she came out of that experience a different baby...something of her mentally was lost at that point but I also remember in special care being concerned and asking the doctors why she couldnt straighten her legs....you notice this king of thing when you are holding her legs for a nappy change.Anyway the Doc really didnt have any answers and dismissed my concerns saying that it was probably because she'd been curled up in the womb....she was 4 months old at this point.Plus she always faced tha same was and didnt turn her head to the other side at all and had a right side/hand preference,she can=me off CPAP and breathed with her tongue hanging limp out of her mouth......NOW I see that my concerns were real and showed signs even then of her CP .I just didnt know what it was,just that something 'wasnt right'.
I have videos of her and now,looking at them it seems so obvious.....isnt hindsight a great thing.
Anyway at least I feel reassured that it didnt happen in Leicester although it probably didnt do her any good.

Yesterday i got my carers allowance and I have blown most of it on buying her some clothes which fit lol.... age 3-4yrs (big girly) and today some toys which i hope will stimulate cause and effect.
I got an Early learning centre drum which when you tap it makes a noise and light up different colours, a train which has balls in it which popp about when she pushes it and a spinning top which has coloured balls in it when the top is pushed down and plays a tune....she hasnt got the strength/co-ordination in her arms to push it down though so that isnt so good at the moment as I have to do it for her.maybe in time she will do it.
Finally our birth to 3 service (portage equivalent) has picked up her caseload and will come out for the first time on Wednesday.Im so so pleased this is happening as she is really behind now....well I know that she is likely to always be 'retarded' according to her diagnosis but all the same it bothers me how uncommunicative she is etc...............this is probably going to sound overly dramatic but i just have this feeling something else is going on....like an autistic spectrum disorder,there I've said it.This has been on my mind for months.....I KNOW there is something else happeing with her....its not just that she doesnt communicate,its that she has no desire to,she hates being touched and will pull away from you if you touch her hand,she avoids eye contact,she gets ...like sensory overload.she has never wanted to be hugged or kissed.None of this is normal baby behaviour is it.
maybe these questions will be answered when we see the paed in March....maybe its just nomal for cerebral palsy children??who knows.
It would be so nice to be able to sit down with someone who has a child with Cerebral palsy and chat through some of these things...and how they coped with their child diagnosis too.I know a lovely couple who have a little boy who is 6 with CP,they are SO together though about the whole thing,they know what he is entitled to and fight for it accordingly and just generally seem to be doing so much better than me with everything,where as me...well i just want to cry and feel so overwhelmed and alone at the moment. DH seems pretty ok with it after the initial freak out,but I feel guilty about it and a thousand other emotions in between.
Im going to end here before I end up crying again.

A full diagnosis

apologies for not updating sooner...we were struck down by this awful flu bug and so wiped out for Christmas and only just feeling 'back to normal'

Anyway we saw Seraphinas new Neurologist at Birmingham Childrens hospital on Monday to get a more in depth diagnosis etc rather than the 'we think she has cerebral palsy'.Was really hoping that they were wrong to be honest. Anyway,Neuro was lovely and took lots of time to examine her and then called in another consultant (so we knew then news wasnt good) anyway to cut a long story short she has been formally diagnosed with Spastic diplegic Cerebral palsy with left Hemiparesis and severe progressive microcephaly. from what I can understand from that her legs are worse than her arms (although her arms are affected) and her left side is worse than her right,also her head growth is next to nothing (1cm in the last 12 months) which is suggestive (their words not mine) of severe mental retardation. We are going to be admitted for overnight EEG as he suspects that some of her sleep problems are due to seizure activity and she will also have a normal awake EEG.oh, also got to have urgent hearing test and speech and language input as she is communicating very little so he is concerned about that.She also needs to have botox in the back of her legs. He doesnt think she can hear properly and we already know her sight is poor.He didnt think another MRI pr CT was worth it as its already known she has enlarged cystic right ventricle and PVL,siad it would be putting her through another GA for nothing really.anyway,I kinda feel like I've been hit round the head with a breeze block to be totally honest I feel a bit down about all this as he said he was sure she will never be very mentally aware! ..

last few days have passed in a bit of a blur,tried researching food/suppliments that might 'cure' her or stimulate brain growth, contacted Face to face.....to find they dont support my area,neither do Contact a family so that blew that one out of the water lol.Would just be nice to sit down and have a chat with someone who has a child like Seraphina.......theres always quetions you think of asking after youve seen the docs and some of them could probably be answered by a parent of a similar child.
This cold snap has really upset Seri,the spasms in her hands have been really bad...yesterday she couldnt move her arms at one point,they just 'locked' at the elbows and her legs went at the same time poor love screamed and screamed.I gave her baclofen and calpol but it took sooooooo long to work.There must be something better to use for there kind of emergencies,seems so cruel to just leave her.Should have asked Neurologist but you always think of these things afterwards and I dont know if I dare phone and leave a message for him :-s,not due to see him again till March.

Pets......

Lydia with Toffee,our ancient Rabbit....who thinks he;s a dog! and Harvey..our yellow Labrador Puppy who we collect on 13th Dec.Pic shows him at 5 weeks old aaaahhhh!

Sheffield update from 27th November

right we spent all of yesterday in Sheffield....I have to say I went with really high hopes of having a diagnosis for Samuel and good chat with Gastro. alas this was not to be because unfortunately the gastro Samuel has been referred to was unavailable to speak to us even though he was in clinic.I did find this a bit disappointing as although Sam has been in clinic twice and also been admitted we have not seen our gastro once! Apparently Samuels colonoscopy and endoscopy showed inflamation,nodules and ulceration which would be in line with an allergic condition such as an eosinophillic condition BUT his biopsies apparently came back normal .She registrar said this could be because he was having more neocate and less foods that he was allergic to at the time of the surgery so doesnt prove anything either way which is frustrating to say the least.PH test result he said 'showed just acid all the time' but he said the probe was too far down....I then corrected him by saying that it was pulled back to the correct place and then re-xrayed but because that wasnt documented in the notes they are more or less disregarding the test.I said i found that frustrating and he said 'well hes on omeprazole and so theres nothing we would do' As the clinic was over running and we had an appt downstairs with the surgeon we were told to go and see the surgeon and then come back up,by which time the reg would have discussed Samuel with the Gastro con and dietician and then formulated a plan. So we went down to see surgeon and came back.....to find they had all left clinic and gone .All I had was the receptionist hand me a bundle of forms for stool samples,FISH genetics test (whatever that is...all it said was ?autistic spectrum disorder ??) and RAST test??? for milk protein,wheat,and some others which I cant remember. we got back from Sheffield at 5.20pm....to an answerphone message from our local Dietician to say she had a phonecall from Sheffield and if we got back before 5pm then to phone her straight away if not them she wasnt back till next Tuesday afternoon. so what we gained from that visit was absolutely nothing and I still have a child who is now so poorly that school is out of the question...........they even saw him have an attack of the runs while he was there,screaming,crying and walking like he had been riding a horse all day,legs apart as he had poo running down his leg.I find it unbelievable to say the least! Problem was that the reg himself admitted that Samuel and seri were way beyond his expertise but Gastro just want available to speak to us.Registrar said that he would speak to gastro and that Gastro would probably come and speak to us....but he didnt. Seri was pretty short and sweet.Apparently Gastrostomy feeding is out of the question at the moment as she is still not back up to correct weight and has been too poorly of late.Surgeon seemed to think that there was a good chance that her stomach wont work well enough to ever accept stomach feeding.A skin and muscle biopsy was also suggested to us as a good idea now as she is having so many problems. Thats about it.Im feeling totally frustrated and fed up._________________

Apart from the frustration Seraphina had her 2nd Birthday.We got a banner from Birthdays and decorated her wheelchair both sides with happy Birthday.Bless her she thought it was great fun trying to rip it off as it made a nice crinkly sound when she touched it as it was made out of metallic paper.She had a Pepper Pig Birthday cake (though we had to pretend with the candles unlit because of her oxygen) and we also took a cake to Church on the Sunday to share with everyone,so many people have been praying for her over this last 12 months we wanted to share her birthay with them all.

she had some ovely presents including the most gorgeous T-shirt with a ballerina on from my friend Hazel which matched the skirt and ballerina tights we had bought her perfectly!

Will have to get round to posting a few more pictures on here so you can see the Birthday Girl