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Monday April 2nd 2007.
Today was the big day - off to Manchester for the first
of what will be a weekly enzyme infusion. This is a process which takes between three and five hours and, if there are no
unpleasant side effects, could transform the quality of my life by reducing a lot of the unpleasant effects of Hunter
Disease. It will not cure me but it could make life a lot more pleasant whilst, hopefully, a cure is found. You
can imagine then how we felt to receive the news that I am not fit enough to be treated today, having
a chest infection. They may be keeping me in until Thursday when they will assess the situation with a view to trying
again. Mummy is devastated, having waited five years for this moment.
Wednesday 4th April 2007 We leave Harrogate for Manchester at eight
in the morning. When we arrive I am assessed and found to be fit enough for treatment. The enzyme is connected to my portcath
and there is then a period of three hours twenty minutes whilst the process takes place. During this time Mummy and Grandpa
Mike take it in turns to keep me both still and amused, not an easy task! They show me some of my favourite videos and give
me some food, which helps to pass the time. There is a bit of a scare half way through when the needle got blocked but this
is soon sorted by relacing the needle. We arrive home some nine hours after we left. We are happy that the procedure of enzyne
relacement therepy has at last started and that, so far, there are no side
effects. I will let you know how I feel in my diary entry after my second treatment next week.
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| Mummy and me with lovely nurse Joan Fletcher. Notice the tight grip Mummy has on me! |
Thursday 12 April 2007.
Another early start to Manchester for treatment
number two. Everything went very well with Mummy and Grandpa Mike managing to hold me still for the three hours needed. They
are hoping that eventually I will realise how important it is to keep still and that I will do it on my own - I hope they
are not holding their breath! I did tell you that I would let you know of any changes following last week's treatment. Apparently
I am stringing together longer sentences than I used to. I am not sure why this is because my understanding is that the treatment
does not breach the blood/brain barrier. However, it has been noticed by family and non family alike. I have also made an
amazing recovery from the traumas of the last three weeks. So far, so good.
Monday 16 and Wednesday 18th April 2007. Treatment number three and the day is still a long one at nine hours from leaving home to
my return. However, there are still no major side effects and the whole family is pleased with my progress. When Mummy collected me from school on Wednesday, the teachers and helpers couldn't wait
to tell her of the dramatic change in me. They said it was as if a switch that was off had been turned on!
Apparantly I am talking, laughing and interacting with the other children better than before.
Monday 23 April 2007. Treatment number four with Mum, Dad and Rebecca in attendance.
No problems although Mummy did say that It was harder to keep me quiet. This could be because I have more energy now. This
fact is endorsed (with feeling) by my teachers at school! I am also going to bed half an hour later than I used to. Mummy
measured my tummy before I started treatment and it was 26 inches (I am not into metric!), it is now 25.5 inches.
Monday 30 April 2007. Treatment number five gets of to a bad start with a hold-up
on the way making the journey nearly two hours! However Mum and Grandpa Mike managed to control me for the nearly three and
a half hours it took. The results continue to get noticed. I went over to Ireland with Mum, Dad and Rebecca last week to see
my beloved Laura and all my other relatives. Whilst there I had a birthday party which was lovely especially as I had another
one when I got back to England. Arn't I lucky? Anyway, whilst in Ireland everyone commented on my improvement and
the fact that I smile so much more now. All this was after just four treatments! My tummy is now down by one full inch
to 25 inches.
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| Mummy, me and another lovely nurse, Laura. Notice how tight I still have to be held! |
Monday 14 & 21 April 2007. Treatment numbers six and seven are with Mavis assisiting Mummy whilst Grandpa Mike is on holiday.
Nothing exceptional to report other than to tell you that one of my carers at school said the difference in me is like someone
turning the OFF switch to ON! That's a pretty amazing comment isn't it?
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| Mavis and me prior to treatment commencing. |
Wednesday 30 May 2007.
Treatment numbers eight and it's back to the Mum and Grandpa
Mike team. As the treatment progresses I am apparently becoming harder to hold still for three hours. I am also more difficult
to control at home with my new found energy. The upside is that I continue to be a far happier child and communicate better
than I used to.
Monday 4 June 2007. Treatment number nine and I am finding it harder than
ever to sit still for three hours. However, Grandpa took me to hydrotherapy in Ripon after my long day in Manchester.
The reaction from physiotherapist Damien when he saw me in my swimming trunks made it all worth while. He said I looked much
slimmer than before. He also demonstrated my new found mobility in the water. If I can just learn to use my arms as well as
I use my legs, I will be swimming!
Monday 11 June 2007. Treatment number
ten. With a bit of luck this could be my penultimate treatment
in Manchester. From 26 June nurse Sue will be coming to my house on a Tuesday morning. This will fit in nicely with my horse
riding at Springwater which also starts in the afternoon on the same day. The treatment today was fairly routine with the exception of a minor hitch when I had to be reconnected.
You can see from the photograph how much I loved the attention of three lovely females - Grandpa Mike seems to be enjoing
it too! It was very hot today and if it
hadn't been for the use of Jane's fan, I don't think I would have made it.
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| With Kelly, Joan and Kate. Well, wouldn't you be smiling! |
Monday 18 June 2007.
Treatment number 11. A sad day in a way as I
say farewell to the wonderful staff in Manchester. From next Tuesday I start treatment at home, with nurse Sue travelling
over to look after me.
We had a phone call from Yorkshire TV recently when reporter
John Hill said he had been reading about my progress on this page! They came to interview Mum and then put a report
out on their Calandar programme.
Tuesday 26 June 2007.
Treatment number 12. My first treatment at home with nurse
Suzanna in attendance. It all goes very well with Mum, Dad and Grandpa Mike taking it in turns to hold me still. Everyone
agreed that it is a much more relaxed procedure, with the added bonus of my being able to return to school in the afternoon
to get rid of my new found energy.
Tuesday 3 & 10 July 2007. Treatment number 14 & 15. The alert amoung you will
realise that treatment number 13 appears to be missing! This is because silly old Grandpa Mike forgot to enter an earlier
one and rather than go back and enter it, he has decided to miss it out altogether. Anyway, back to business. Both last week and this proceeded without any problems. I continue
to gain energy and am still much happier than I used to be. My Mum says that whilst this is excellent news, I require even
closer supervision than before. This is because I can move much faster and can get up to mischief much quicker. I do tend
to sleep better than before but still go to sleep late and wake up early. No matter how little sleep I have at night or how
much energy I expend during the day, I NEVER sleep during the day. I also still have no concept of danger, which continues
to make looking after me a full time job. Since my last entry I have been to the MPS conference which I thoroughly enjoyed. I met Dr Ed and
a lot of his lovely staff there together with many MPS friends I have made over the years. See the photos taken at the Disco
below.
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| Tell me Dr Ed, What do you think of Gordon Brown? |
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| I would love to have a dance with you Joan. |
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| Come on Dad, put a bit of effort into it! |
Tuesday 17 & 24 July 2007. Treatment number 16 & 17. With Grandma Kate for the first time.
She says that I am very difficult to keep still! Nurse Suzanne agrees. Treatment is now a matter of routine and if I can learn
to keep still would be a lot easier! I have now finished
at "big" school for good. After the summer holiday I go to a new "special" school. I am very sad to be
leaving the many friends and helpers who have helped me so much over the last few years. I will miss them all - specially
Mrs May, Mrs Askey and "Jefferson". I will let you know how I get on in my new school.
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| Sharing a joke with nurse Suzanne and Mummy. |
Tuesday 31 July & 7
August 2007.
Treatment number 18 & 19.
Nothing much to report. Suzanne was away on
7 August so Joanne stepped in. Another nice nurse to add to my collection!
I am going to ask all those who know me well
to write down (without reference to each other) how they see changes in me since I startd ERT. I will let you know what they
say as soon as I have it all.
Tuesday 14/21/28 August
2007. Treatment
number 20/21/22. I
have decided in my infinite wisdom to report by exception only on future treatments. This is because it is becoming
a routine matter these days. I will give a more detailed report on my next visit to Manchester. What I am hoping for in the
meantime is that someone will invent a system that allows me to carry the machinery in a backpack so that I can
move around whilst receiving the ERT!!
Friday 24 August. A great day arrives as My beloved "cousin" Laura and her sister Sarah arrive from Ireland
for a few days. I pretend to be quite shy at first but soon I am doing my usual "can't take my eyes of you"
routine. All too soon she is of back to university but I am left with loads of photographs to look at till I see her, hopefully,
in Ireland next year.
Treatment number 23 & 24. Nothing to report on the treatment, HOWEVER, Mum is concerned that whilst I am still a lot fitter,
I do not appear to be quite as happy as I was. She wonders if maybe the ERT needs adjusting to take into account my reduced
weight and size. (I have lost about 8 pounds and 4 inches around my waist). We are off to Manchester next week so we should
find out then. The really great news is that Mum, Beccy and Grandpa
Mike are taking me to Ireland at the end of October - I can't wait! I
have started my new school this term. It is called Springwater and you can read about it by clicking the link on the LINKS
page. I hope to have some photographs soon.
Treatment number 25.
Back to Manchester for a review of my progress after about three months treatment
at home. It was nice to see all my friends again and they commented on the improvement in my physical look and ability. They
also noticed how much happier I am and that I appear to understand some questions now. All in all, although it
was a long day, a very satisfactory visit.
Jane is going to investigate the possibility of a "back pack" for my ERT. I am keeping
my fingers crossed.
Treatment numbers 26 & 27
Nothing much to report
other than I am finding it harder to keep still for the three hours needed. I had a new helper from the Community Children's
Nursing Team on treatment 27. Her name is Shona and I have met her before. She is very nice and brought along some toys to
keep me amused.
Treatment numbers 30 on 17 November
Eleven further treatments
since my last entry with no change to the routine.I understand that the "back pack" has been approved and hope that
I will get the chance to have one. Shona comes to help look after me most Fridays and, as she is only a little bit bigger
than me, I am sure she would welcome it too! I have been to Ireland where I was treated like a prince by all my relatives.
I also managed to see my beloved Laura, who took time off from her medical studies to see me.
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| Playing in Aunty Phil's garden in Ireland. |
November
2007. A summary of my carers thoughts post ERT.
Ryan has changed quite a lot since he started Enzyme Replacement
Therapy in April. The main differences are: More energy. Loss
of weight. Increased appetite. Appears to be pain free most of the time (Less crying). Softer hair. Talks
and sings more. Increased mobility. Less crying/sweating in bed. All this has made for a much happier Ryan than before treatment.
However, a lot of the problems associated with Hunter Disease still remain and his increased mobility is bringing with it
new problems. Because
he still has no concept of danger he requires watching every minute of his waking hours. With his new found speed
and strength, he may grab anything he sees. This could be a pan of boiling water in the kitchen or a handful of someone’s
chips as he walks past them in a cafe! Ryan also needs to be held by the hand very tightly whilst out walking
as, if the mood takes him, he will attempt to dash out into the road. He still needs to have his meals either cut up into small pieces or liquidised. Most
of the time he has to be fed because he tries to put too much into his mouth at one time, leading to choking. At bed time someone needs to
be with Ryan until he falls asleep. This can take anything from ten minutes to an hour or so. He will wake several times during
the night and if no one is around, may wander! He will wake permanently from about five thirty (on a bad night) onwards.
However little sleep he gets at night; he never sleeps during the day. Sometimes Ryan will cry for no apparent reason. We believe this is because he
is in pain but because he can’t articulate this fact, it is difficult to ascertain where the pain is.
However,
notwithstanding the above, it is worth repeating that Ryan is a far happier boy than prior to ERT.
Friday
4 January 2008. I'm told by Suzanne that this is
treatment number 40! Nothing much changes and I still find it difficult to sit still for three hours.
I
had a good Christmas with all the family around helping to look after me and keep me happy. I was also able to join them on
the Christmas walk this year thanks to Beckham's Buggy. We were out for over four hours and it was great fun, especially
watching Mummy trying to control our dog Ugly Betty!
Friday 18 January 2008. Great excitment as Shire are here to film my Elaprase treatment
as part of a training film they are making for their staff and future ERT recipients. All present were interviewed and asked
questions about how things have changed since treatment started less than a year ago. As one picture is worth a thousand words,
I will let the pictures tell the story of the day.
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| Looking through the door at Suzanne being filmed. |
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| Suzanne - the Diva -being tempermental whilst being interviewed! |
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| It's all too much for me and I call for a toilet break - complete with ERT equipment! |
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| Back to normal with Shona and Suzanne. |
Friday 1 February 2008. Suzanne has been voted emloyee of the month by her employer
Healthcare at Home. As far as I am concerned she should get the award every month! Well done Suzanne, we think the
award is very well desesrved.
Wednesday 19th March 2008 Once again we leave Harrogate for
Manchester at eight in the morning, as we did nearly one year ago on the 4th April, for my first treatment. This time
I am receiving my treatment plus a general check up. This includes a check-over by the doctor, some video-ed tests by
the phsio and some x-rays. Everyone seems quite pleased with my progress and we wait to see if there is any feedback. I have
not been quite so well this last month, with pain which I have not been able to explain due to my lack of speach. The consensus
view is that I am having tummy pains and the doctor has changed my medication in the hope that this will sort it out.
We finally leave Manchester and after many motorway hold-ups, arrive home at nearly 7pm. A long day!
ONE YEAR ON!
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| POSING WITH MUMMY AND MY TREATMENT PACK. |
Friday 28 March 2008. Would you believe it. It is now one year since I started
treatment and to celebrate I have today used my new "Treatment in a Bag" system which means I no longer have to
be restrained for three hours. I can now move around and my carers are the ones that have the problems, as they have to follow
me to ensure I get up to no mischieve. It's great! Apparently everyone was amazed that I didn't try and interfere
with the bag or tubes.
19 April
Hoorah! It's off to Ireland for my Birthday treat. We stay in a thatched cottage overlooking Galway Bay. On Sunday
all my Irish relations come over for my party and we have a great time. I am especially pleased to see my beloved Laura. The
next day I have a nasty accident as I tread on a piece of broken glass and finish up having a general anesthetic in University
Hospital,Galway. They were all wonderful to me there but I finished up having to spend the rest of the week in Beckhams buggy,
as I was not allowed to walk. Notwithstanding all this, everyone agreed that I was really happy whilst in Ireland. Apparently,
I never stopped smiling and even started talking more. Grandpa Mike took so many photographs that he is going to devote a
seperate page to them shortly.
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| A ROMANTIC MOMENT WITH LAURA. |
Monday 16 April 2008
I have not
been feeling too well lately and Daddy took me to Harrogate hospital today. They think I have a liver infection and have put
me on antibiotics. However, I am off to Manchester on Wednesday to have my teeth looked at (if they are able to get near my
mouth - I HATE people looking at it!) and Mummy has arranged a check up there for me.
The other major problem I
have is that I am now aspirating and am going to have to have a feeding tube inserted in my tummy. I don't know how I
will cope with that as eating is one of my few real pleasures in life.
July 2008
A good time last week as it was Grandma Kate's "big" birthday
and we had visitors from Ireland and Dorset up to help us celebrate. I coped very well and we finished the week with a BBQ
in the rain!
I am waiting for another call to Manchester Children's Hospital to be assessed for the fitting of a
feeding tube. At first Mummy was very downcast about this but as she has now been told this is a precautionary operation and
that I can continue to eat my mashed food for the time being, she is less worried than she was. I will be delighted too, as
I do like my food.
August
2008. Nothing
much to report since my last entry. I have been to Manchester a couple of times and am due to go again shortly. After much
assessment I will then be having my feeding tube fitted.
I have not been my normal self of late; I have been whinging
a lot but am unable to articulate the problem to Mum and Dad. My sleeping ranges from an ocassional all nighter to just a
few hours. I still astound everyone by never sleeping during the day!
OCTOBER 2008
(Entry by Grandpa
Mike)
Ryan has not been too well through September and a scan revealed that he had been aspirating at a far greater rate
than at first thought. This lead to an immediate admittance to the Manchester Children's Hospital for an intensive course
of antibiotics and physiotherapy, to clear the lung infection. He was also put on a nasal feeding tube until a permanent tube
is fitted into his stomach on 4th November. (subject to the infection being clear and his being fit enough.) Rachel has been
staying with him from Monday to Friday and Bob at weekends, whilst we have been traveling over midweek. It is important that
Ryan, who will never again have any food or drink by mouth, has someone watching him all the time. As well as his trying to
pinch any food he sees around the ward, he also puts any small object he fancies into his mouth (a condition called
Pica) and there is always the risk that this could choke him.
Naturally we are all devastated by these events. There
is always a risk to Ryan when he has an anesthetic but we also have to accept that the one great love in his life - eating
- has now been lost to him. The only bright bit of news is the way Ryan has thus far coped with all that is happening
to him. It has also been amazing how Rachel, who was already a star in our eyes, is managing to remain so positive and cheerful.
Truly an inspiration and I am sure one of the reasons Ryan is coping.
November 2008
November 4th has come and gone without my Gastrostomy
taking place. It was cancelled and has now been scheduled for 8th December in Manchester. In the meantime I have been in and
out of hospital with various infections or because I have pulled my feeding tube out. However, I am generally more cheerful
at the moment and am back at school most days. Mum and Dad have got into the new feeding routine of three a day - each taking over
an hour. On top of this I still have my ERT every Friday and this lasts over three hours!
The good news is that Dreams Come True are sending us to Lapland to see Father Christmas on December 19th. We are all keeping our fingers crossed that I will
be fit enough to travel.
December 2008
More problems for me as I got further infections and had to be
kept off school in an effort to get fit for my operation on December 8th, in Manchester. However I arrived in hospital on
the 7th to be told I was not yet fit enough. I was put on an intensive antibiotic and physiotherapy regime in an effort to
enable the operation later in the week. Once again Mummy is having to sleep in a chair next to my bed With Daddy taking over
at the weekend. Grandpa Mike and Grandma Kate came for the day on Wednesday. The latest news is that I might have the Gastrostomy
plus umbillical hernia operation this afternoon (11th) plus an endoscopy to ensure everything is done correctly.
I'm trying to be positive but it isn't easy!
15
November 2008 Disaster
strikes as last night I managed to pull out my new feeding tube and today it was back to the operating theatre to have another
Gastrostomy. I am now back in the ward but suffering some pain and discomfort. This means that my trip with dreams Come True
to Lapland has been cancelled. Poor Mum and Dad are taking it in turn to sleep in a chair by my bed again. I now just hope
that I can be home with my family for Christmas.
CHRISTMAS
2008
Hoorah! At last I leave Manchester Children's
hospital and return home. There are still one or two scares and I am having my tummy scar looked at and treated daily
by Harrogate Hospital. I am now on three feeds a day, each one lasting some two hours. When I have my ERT it makes a total
of some ten hours treatment in one day!
My first non eating Christmas went quite well considering. As usual we had a
family day with Grandpa, Grandma, Great Aunt Anne and Sarah joining us. I was able to have a little taste of dinner with
a fork dipped in to gravy. After dinner we opened presents but I am not as interested in these as I used to be. However, everyone
was pleased to see me smiling and saying the odd word again and they are hoping I continue to make a slow improvement.
A Happy New Year to all my readers and I hope Mum and Dad keep fit and well so that I can continue to have the 24/7 care
they give me.
JANUARY 2009
Well, here
we are in a New Year and I am still not as active as I was before my operations. Whilst the stress has left my face I am hardly
talking and my previously ready smile is now not so ready! I am back at Springwater and am pleased to receive the mental and
physical stimulation they give me. I have also spent a few days at the wonderful Martin House, to give my Mum and Dad
a break from the 24/7 watching I need when at home. I am hoping that my current situation is trauma suffered as a result of
my operations and hope that, eventually, I may get back to where I was last January.
February 2009
No real change since my last entry. I am not speaking much more but am smiling a bit more. Grandpa Mike says to
watch out if you look after me because I am trying to bite anything I can get my hands on. In his case it was his thumb,
which is still bruised two weeks after I got it. You have been warned!
MARCH 2009
It is with great sadness that I have to tell you that my wonderfull Healthcare at Home nurse, Suzanne, died
last week. Suzanne had not been too well of late and had recently returned from a cruise. She will be greatly missed as she
had become an important part of my family.
APRIL 2009
Well, would you believe
it? Everyone is amazed at the change in me since Mum got my feed changed. I have reverted to being the happy boy I was many
months ago. I speak a little bit more - just the odd few words but it brings so much joy to my family. The downside is that
I am not sleeping so long at night but this, I am told, is a small price to pay. I still try to put anything I can into my
mouth and so have to be closely watched at all times.
APRIL 18th 2009
A big party for me
with all the "special" people who have helped me in one way or another invited. The weather was fine and I had a
great time meeting helpers both past and present. See the photos on:
http.www.photobox.co.uk/album/108545765
On my actual birthday, April 22, we are having another (family) party to help me celebrate my 10th.
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| Advertising a parent for sale! |
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| With my two lovely carers from Rossett School. |
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| How do you like my Birthday hat? Thanks Julie. |
May 2009
If it's not one thing it's another!
I have been on a two week intensive antibiotics treatment. This involved receiving the antibiotics intravenously three times
a day; during the week via a nurse at 9 and 3 and to the hospital at 9 in the evening. At the weekend it means three visits
to the hospital each day. In spite of this I am told that I am Coping remarkably well and still have a smile for everyone.
I had a lovely surprise when Michael, Eileen and Aunty Phil came to see me. They had come over from Ireland for
Aunty Anne's 90th birthday. I was really pleased to see them.
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| THE FAMILY AT AUNTY ANNE'S 90th. |
June 2009
Off to Martin House with
Rebecca and Grandpa Mike so that Mum and Dad can have a well deserved rest. I really enjoy it here, being looked after by
their lovely staff in beautiful surroundings. Rebecca also loves it as she is completely spoilt by everyone.
I am back
to Manchester children's hospital when I get home as I am still having trouble with my breathing and get out of breath
very quickly.
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| With Rebecca in the Hot Tub - utter bliss! |
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| Some animals came to visit us. This is me with a hen. |
JUNE 2009
What a week! We came home from the MPS conference,
where we all had a great time, to find that one of the children there had been in contact with Swine Flu. The performance
Mum had to go through to get Tamiflu for me had to be seen to be believe. Eventually, with great help from Christine Lavery,
we received it at just before midnight. There then followed a week at home for me and the rest of the family. Thank goodness
we are all now clear and we are keeping our fingers crossed as Swine Flu becomes more widespread.
July 2009
Sarah flew over from Galway for an interview
and to see us. It was great seeing her and we had a celebratory BBQ (in the rain) to welcome her.
I am off to Martin
House with Rebecca next week for a few days to give Mum and Dad a break. Grandma Kathleen will stay too and Grandpa Mike will
visit and help with my ERT. The following week I am off to Manchester for a weeks intensive treatment to try and clear my
breathing problems. It will be my first visit since the hospital moved to a new building from its old Victorian premises.
I will let you know what it is like and how I get on.
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| Sarah admiring my new Aussie hat. |
August 2009
What a month! We had a
visit from Claire and the boys, who stayed for a couple of days. On one of the days we went to Flamingo Land and joined up
with Daniel and his Mum, Dad and sister, Elle - so that meant we had four Hunter kids enjoying the day together.
We
also have a Hot Tub in our garden which was kindly donated by a lady called Elissa and installed free by Tom from T J Pybus. Tom's
company was doing some work at our house and he heard how much I enjoyed the one in Martin House.
The world is full
of wonderful people.
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| Elle, Rebecca, Oliver & Samuel. |
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| Daniel, Joe, Ryan & Elain. |
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| Rebecca, Ryan & Dad in the Hot Tub. |
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| Oliver, Samuel, Rebecca, & Elle. |
OCTOBER 2009
I continue to have problems with a chest infection and antibiotic have not had a great effect. Now Manchester
Children's Hospital have isolated the "bug" and want me in for a weeks targeted intravenous treatment and physiotherapy.
The only problem is that they are currently unable to accept me due to bed/staff shortages! Mum rings up daily but no joy
so far. In the meantime I am not getting any better and Mum and Dad are unable to plan their work, as they have to be ready
to take me to Manchester (65 miles) at short notice.
OCTOBER/NOVEMBER
At last I
am able to go to Manchester Children's hospital for the treatment I need. However, all does not run smoothly and we have
to cope with consultants not turning up to look at my Gastrostomy, people unable to make a decision
as to when I can go home to continue my IV treatment there (Mum and Dad are fully trained). And to cap it all I had a fit
one night and greatly scared my Dad. However I am home now and coping with my usual good humour.
The good news
is that whilst I was away, Dreams Come True had a new tricycle delivered. It is specially adapted to cope with my requirements (I can't pedal or steer) and
means I can now go for cycle rides and get some fresh air and exercise. I will post a photo soon.
November 2009
I am still poorly although
the intensive IV treatment seems to have cleared most of the "bug" from my lungs. However, I am having problems
with diarrhoea and a general "not well" feeling. The
authorities sent a nurse to test for Swine Flu and when Mum rang for the result, she was told it was negative (hooray!) but
as the tests are not reliable, assume it was positive! Grandpa Mike thinks the whole world is going mad.
So, a week off
school then. (http://www.springwater.n-yorks.sch.uk/wa/)
December 2009 Had to have my Swine Flu jab at school. Grandpa Mike came to help and was surprised
at how badly I reacted to the jab, as I am usually so brave. Someone told him that the needles are not as sharp as the normal
ones, as they are made in Eastern Europe but I find this hard to believe! Anyhow, I have had the jab now and hope
that I am protected. Next it was off to Manchester again, this time to have a new feeding tube fitted (Gastrostomy). As is now becoming the norm, things did not run smoothly and once
again Mum had a bit of a scare. However, all ended well and I am able to get back home for Christmas.
January 2010
Just returned from four days at Martin House.
I was there so that Mum and Dad could get a break. Grandma Kathleen stayed there too so that meant that Rebecca
could join me. We both had a great time. The staff said that Rebecca was really good - is this the same sister I know!!!!!!
They also said they would miss me and my smile.
Go
and see the film Extraordinary Measures if you get the chance.
February 2010
I
have had a good month with no scares for a change. One of Grandpa's friends has very kindly offered to buy me a hoist
so I can be lifted into the bath. I hope this will helps both Mum and Dads backs,
which often give them a lot of pain.
This month there is an article in the MPS magazine which they asked my Grandpa to
write. You can read it on the PUBLICITY page, towards the bottom.
Thursday 12 April 2007. Another early start to Manchester for treatment number two. Everything went very well with
Mummy and Grandpa Mike managing to hold me still for the three hours needed. They are hoping that eventually I will realise
how important it is to keep still and that I will do it on my own - I hope they are not holding their breath! I did tell you
that I would
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