Wednesday, 26 November 2008

oh boy what a day!

Spent the morning in hospital this morning with Ser,having her eyes checked and (so i thought) being fitted for her glasses.
Well she had all her checks done and those nasty stingy drops put in her eyes and then went to see the big cheese consultant.She was lovely it has to be said and apologised that it wasnt better news....apparently Seri has a problem with the shape of her eyes and also the development at the back of the left eye.She HAS lost some of her left field of vision (as we had been told previoulsy) and her sight isnt brilliant..she explained it like this (showing me one of those eye test charts you normally see in thenopticians with the letters on) Seri's sight is like she can read only the top two lines on the chart.
HOWEVER,she is also showing signs that suggest that neurologically she hasnt the potential for better eye sight because of damamge sustained to the visual centre of the brain,in which case glasses would do nothing.So she is sending her to Birmingham Childrens hospital (was going to be Moorfields in London but she said Birmingham have started doing the same test) for electrodiagnostic testing which will basically look at the brains visual response and see what state its in.When we get those results ,which will be about 2-3 months,then she said we will have a better idea.she said that if she's proved wrong and she does have potential for better vision then they will '' pull the stops out'' and see what surgical options there are and what can be done with glasses.

came out feeling a bit crushed to be honest,always seems to be bad news. Arrived home to find a big envelope from the EPICURE study Seri was registered on...they are researching outcomes of extremely premature babies born in 2006.Seri's 'lovely'(in the same way a severe gastric bug is lovely) neonatologist was taking part on the study team.They sent a huge questionaire to fill in with such things like ticking all the different words she could say....hmmm that wouldnt take long and how well she's walking etc etc and then were 'inviting' her for a full medical and assessment which would be videoed...................................needless to say I phoned them up and very politely declined this amazing opportunity (Im sure you can detect the sarcasm lol!)

well tomorrow is my princess's birthday and we are in Sheffield Childrens hospital all day for the latest on Seri and also Samuels biopsy results.Lets hope theres SOME good news tomorrow!!!

Tuesday, 18 November 2008

Had to post this

I am the Child

I am the Child who cannot talk.
You often pity me,I see it in your eyes.
You wonder how much I am aware of - I see that as well,
I am aware of much - whether you are happy,sad or fearful,
patient or unpatient,full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration,knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation,so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not giveyou answers to your everyday questions,responses over my well-being,sharing
my needs or comments about the world about me.
I do not give you rewards as defined by the worlds standards -
great strides in development that you can credit yourself.
I do not give understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character,not mine;
the depth of your love,your commitment,your patience,your abilities;
the opportunity to explore your spirit more deeply that you imagined possible.
I drive you further than you would ever go on your own,
working harder,seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,I need to go to the bathroom,oh,Ive dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you aware of your great fortune,
Your healthy back and legs,your ability to do for yourself.
Sometimes people appear not to notice me;I always notice them.
I feel not so much envy as desire,desire to stand upright,
to put one foot in front of the other,to be independant.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impared
I dont learn easily,If you judge me by the worlds measuring stick.
What I do know is infinite joy in simple things.
I am not burdened as you are with thestrifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impared.

I am the disabled child.
I am your Teacher
If you will allow me,I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give you with my innocent trust,my dependancy upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

someone posted this through my letterbox and I had to share it with you as meant a lot to me.It is so true,how a disabled child completely re-defines your life and who you are.having a disabled child is such hard work and at the same time such a rich and beautiful blessing.

Saturday, 8 November 2008

forgot to say...

........Seraphina is next in Sheffield to see the surgeon and Gastro on 27th November along with samuel who gets the results of his biopsies...its her birthday,what a way to spend it.Cant believe our little cherub will be 2!!
We are going to try and transfer some of her care nearer to home now as it takes us 2-3 hours to get to sheffield from the midlands depending on traffic.Neurology is being transferred to Birmingham Childrens as thats the nearest tertiary centre to us.Hope they are good there as I havent had much experience with Birmingham and wouldnt touch Leicester Royal or their PICU with a barge pole!(makes me shudder to think of it after Seri's disgusting experience there when he was 4 months old - I still think they are to blame for some of Seri's neuro damage!)

Anyway the next appt is in University Hospital Coventry to be fitted for glasses on the 26th........hope they do pink ones :-D

where we are now

Just realised its been a few weeks since I updated Seri's much has happened.

Ok firstly she had her 3rd Fundoplication.Heres an 'update post' from another site that I posted when she came out

Seraphinas surgery took longer this time than expected because her liver and stomach were stuck together and the surgeon had to separate them so what I was told would only take 3 hours actually took 5...I was getting quite worried in the end wondering what had happened. Anyway she went to PICU (paediatric intensive care unit) in the end with arterial line,cannula,jugular line and picc line plus ordinary cannula in her foot want realy prepared for all those needles but fine when they explained them.It was hard going back to a picu after the time when she was so poorly and ventliated and I must admit it did freak me out, walking in there bought it al back. They were brilliant in there though and really looked after her.She had to have a catheter fitted as she wasnt weeing but they said that could be down to the anaesthetic and morphine drip.She needed morphine for 4 days in the end ,along with diclofenac,paracetamol and diazepam as she was really feeling the pain this time round but is now just having paracetamol. We are on antibiotics for a staph aureus infection in her Gastrostomy and one of her incision sites opened up again but they seem to be doing the trick..they gave them IV first to get them into her system. To start with she wouldnt tolerate her feed and so they rested her ut for 3 day in the end but shes now on 45 mls per hour so only another 20mls to go to get to her usual 65mls per hour. The only other hiccup was one day when she decided she just didnt want to breathe she kept having apnoeas and her respiration rate was 10 they wanted to take her back to PICU to keep an eye on her as she was doing this even on 1.5 litres of oxygen.Thankfully by the afternoon whatever it was had passed and she was breathing better. she did have some fun whilst being in there shes lost weight and also grown taller and stretched out her splints dont fit any more so the man came to re-plaster her legs for new ones.....and Seraphina tried to 'help' him the end of the procedure there was plaster of paris everywhere!!! even her feeding tubes were plastered lol.Dont think hed been helped that way before...good job he was fairly easy going,the room looked like a bomb site! They will be ready to pick up on 27th October when Sam has his surgery so we will get them then...they are bright yellow this time and going to try and get some stickers to go on them. I will take a pic when she has them Anyway thats about it, shes home (still refluxes but minimal) and just got to build her up a bit now and get rid of her infection .

Then unfortunately she came down with a gastro bug which really knocked her back.Poor sausage.meanwhile Samuel (her 4yr ols brother and felow refluxer lol) went in hospital to have colonoscopy,endoscopy and PH run done.Got back from that and poor Seri had come down with a pneumonia so ended up last Saturday morning taking her to the hospital.They put her on two different lots of antibiotics which shenhas just finished.Still not back to her old self though.

She got weighed yesterday.....and has lost 10lb in weight!!!!(12lb in total if you count the but she lost before fundo).Was quite was the dietician.Sheffield have been informed and the dietician phoned me and we are to feed her continuously now over 24 hours and hopefully she will maintain her weight(or even better put weight on!).The only concern they said is that feeding continuously has an effect on liver function ,but they are going to look into it and let me know next week what the effects are likely to be.

the other thing that has been mentioned by nurses/dietician etc is Seri going into a hospice now for weekends :-(.I know its probably the wrong impression but I associate hospices with dying kids and it just made me shiver at the thought.I have told them i wouldnt consider it at the moment. I KNOW we are knackered...exhausted even (this is the 5th week sleeping on the floor downstairs) but at the end of the day its not Seri's fault shes disabled and requires so much care so why should she be sent away.The nurse has also asked if we know of anyone medically trained who could give us a couple of hours respite in the home every now and again....I dont know of anyone though.Might ask at Church but dont think there are any nurses and thats who it would have to be because of her feeding tubes and suction machine etc.

Well better go and run my sweetheart a bath...have been to lush and bought her some 'ickle baby angel' bath ballistics so she can have a lovely lavender bath as Daddy is home so we can bath her between us and then be moisturised with Lush dream cream.Sure she'll enjoy that!

Heres a pic of her in her wheelchair before she got poorly