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 Timeline Entries 1999 to 2003 2004 2005 2006 2007 2008 - 2009 |
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2004 |
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| January 6th |
Natasha
went to see Haeley the physio today she said there is a slight improvement
but not much. Natasha is having a short break from her exercises until
school starts although she should still do some stretches. Haeley checked
our next appointment as I have some concern about a rash that has
beveloped on Natasha’s upper thighs and on one upper arm and below one
knee. I would like to see Dr Rudge soon. |
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| January 15th |
DR Rudge has had a look at the rash and seems to think it is just part of
Natasha’s normal reaction to the dIsease, no change in medication at
present. Visited Haeley again today. |
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| February 10th |
We saw haeley again she said Tasha is making slow but steady progress and
she wants to see her once a month from now on. |
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| March 9th |
Natasha saw Haeley again today, she still appears to be improving but it
is a very slow progress this time. Her main Trunk muscles and her hips and
shoulder are still weak. I feel that it’s taking longer this time for
things to improve. Natasha was very tired and has a cold so she wasn’t
very co-operative this time either. Hopefully next time there will be more
progress. Haeley will call us about our next appointment, she will check
when we next see Dr Rudge and try and fit it in on the same day |
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| April 23rd |
Another visit with Haeley the physiotherapist Natasha is still improving
slowly. Her right leg is much weaker than her left so she has to
concentrate on building up the strength on that side. She has a few
exercises to do and some stretches to see if she can improve the range of
movement in her ankles as they don’t bend enough to let her walk down
stairs properly. She tends to drop down the steps instead of stepping. |
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| April 29th |
CK 134. We visited Dr Rudge again today. As Haeley said progress is slow
and the JDMS remains active. Natasha still has a slight rash on her face
and hands, I asked Dr Rudge about the long term prognoses as it is now
been over 4 years since Tasha was diagnosed but she could not give me a
definite answer. I have talked to a lady whose son had it from 8 till he
was 21 he is now 33 and has had no further problems apart from the
steroids stunting his growth; he is only 5ft tall. Hopefully Natasha won’t
have it so long. I am concerned about Natasha’s growth as well and she is
worried about her weight. She is eight and would like to be just like
everybody else. Dr Rudge said once the steroids are down to 7miligrams or
below they should no longer affect her growth. Over the next three months
we will be trying to reduce her steroids down to this level. We are going
very slowly this time as she has relapsed badly the last few times the
steroids were lowered. Each month we will reduce them by 1mg, going down
to 9mg this month then 8mg then 7mg |
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| May 25th |
Natasha saw Haeley today. She is still coming along slowly. Haeley gave
her a new exercise chart and some new exercises. This time she also gave
her an incentive to do them, if she does her exercises five times a week
for four weeks she will get two movies passes. The school holidays are
coming up so there should be some kid’s movies out. We are off to
Australia in a couple of weeks for a quick visit to my sister and her four
kids and hopefully to see my brother-in-law in the Disney stage show of
The Lion King he is playing the part of Mufasa so it will be fantastic for
the kids to see. Haeley’s best friend Bella is also in it so we will have
to get him to pass on a “Hi” from her. Natasha is really looking forward
to seeing her cousins. She has missed them terribly since they went to Oz
in October last year |
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| June |
Australia
and the Lion King were both fantastic, Natasha and her sister really
enjoyed playing with their cousins. Natasha Had very sore ears on the
return flight so we will have to get something for that before we go to
Disneyland in September |
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| July 15th |
Steriods
are now down to 7mg. Natasha had Physio with Haeley on the 6.7.2004 her
father took her this time. Haeley said she didn’t nee to see her every
month now and she wasn’t given anymore exercises, swimming and dancing
should be enough. Natasha is on school holidays at the moment and has been
doing quite a bit of activity, she has had some soreness in her legs she
was limping all day on Wednesday and last night said her arm was sore.
Hopefully this is just because she has been doing so much and not due to
another flare. We will be seeing Dr Rudge on the 5th of August
so will do a blood test prior to that to see what’s happening |
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| August 1st |
I have
spoken recently to a lady whose Granddaughter has just been diagnosed with
JDMS. Another father from Wanganui is hoping to get a support group up
and running. I’m really keen for this to get going and would love all the
kids and their families to get together at some time. |
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| August 8th |
CK122.
Natasha saw Dr Rudge today her legs do appear to be a little weaker and
her rash is up again on her face and hands. Natasha has been complaining
about her legs being sore so Dr Rudge has suggested we up the steroids
back to 2ml (10mg) even though her blood test is normal as she does seem
to have a pattern of flaring up about this time of year. We were hoping to
see Haeley as well today, but she was away sick so we have made an
appointment to see her Thursday the 19th. Natasha isn’t very keen to have
her steroids go up again and asked if she will ever get over it (JDMS). I
doubt that she can even remember being completely well. She so wants to be
better so she can play on the monkey bars a school with all her friends
and join in with sports |
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| August 23rd |
We have
had another blood test done on the 14th CK 142 which is still
within the normal range but Natasha is definitely weaker. On the 19th
we went to see Haeley at
Auckland Children's Starship
Hospital and she agrees that Natasha has got
weaker and has given her exercises to do again. The last two Saturdays,
Natasha has had to get out of the pool before her swimming lessons
finished because she is too sore to carry on. We will be seeing Dr Rudge
again on the 9th of September so will have one more blood test
and check up before we leave for Disneyland |
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| September 9th |
CK result
162. We went to see Dr Rudge again today. Natasha is still a little weak
so her medication will remain the same until we return from our trip.
Haeley was away sick so Fiona and another physiotherapist checked Natasha
over. We also meet another little girl who has recently been diagnosed
with JDMS she reminds me of Natasha at the beginning she is just about to
turn five and will be starting school at the end of the holidays. My heart
goes out to her and her family as I remember how hard Natasha found it
being different from the other kids when so was so little, and as a parent
it’s so hard to watch your baby go through this. |
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| October 10th |
We are
back from our fantastic holiday in Disneyland. We all had a wonderful time
and even got to spend a very special weekend with Natasha’s pen pal Sara
who is also eight and has had JDMS for two years. Sara lives in San
Francisco. Sara and her grandmother flew down to LA with so that the two
girls could meet. See our photos and more about our trip under the link “Disneyland
September 2004” |
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| November 5th |
Natasha
had an appointment with Dr Yan (Jackie) yesterday. Over all the years we
have being going to
Auckland Children's Starship
Hospital we have never actually met her before. She is
really lovely. Natasha’s CK has shot up to 314 so she is definitely not
heading in the right direction. Dr Rudge and Dr Yan have suggested that we
try Intravenous Immunoglobulin as there has been some success with long
term cases using this treatment in other countries. At this stage we are
ready to try just about anything, I have had a quick read about it on the
internet, there are risks but weighing it up against the possible benefits
we really have to give it a try. Natasha has had another full Physical
assessment done. This is so any improvements can be measured after
treatment, which will commence next week. We are keeping our fingers
crossed and hoping this will be the break through that we have been
waiting so long for.
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| November 11th |
Natasha
went in for her Intravenous Immunoglobulin on the 11th November we were
told to come in early as the sooner we were in the sooner it would be
finished etc… so we arrived at 8am, she wasn’t put on the drip until
12.50pm so we ended up having to stay until 7pm that night (11 hours).
Luckily we took along some craft things, she coloured in, read books and
painted in the play room. Natasha was fantastic she’s a really good kid. I
told her she makes me feel very proud, she is incredibly patient and
doesn’t complain. Although she did say the next day that she never wants
to do that again. The following day’s she had a bit of a dizzy head and
some soreness under her arms and I thought her eyes looked a bit off white
and she was very tired but by Saturday afternoon she felt fine. As yet I
haven’t noticed any difference in her strength but Dr Yan said it can take
a few tries if anything happens at all |
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| December 8th |
Natasha
had another IVIG yesterday at the Day Stay Unit in
Auckland Children's Starship
Hospital. They
were a bit more organised this time but still she wasn’t attached to the
IV until after 11am and again we had been told to come in at 8am. So it
was another very long day for Tasha. She is finding it very tiring and has
said she doesn’t want to go back, but if there is a chance that it may
help we have to give it a go. The play specialist spent a lot of the day
with her playing games etc so that kept her amused for some of the time.
The drip was in her hand this time so doing any of the craft things we
took along was out of the question but I read to her and she also watched
some TV. We have our next appointment with Dr Yan next Thursday so will
hopefully find out the results of her latest blood tests. Today a new cousin for Natasha was born and tommorrow the 9th is her Birthday |
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| December 9th |
Today is Natasha's Birthday and she has woken up very very
ill. Its suspected food poisoning as she is vomiting all day. We dont
think its a result of the medication. So unfortunately, instead of
celebrating her birthday, she's wrapped up in blankets with a splitting
headache and very upset tummy. |
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| December 10th |
Everything is back to normal. Just an intense 24 hour bout of food
poisoning and Tasha wants to go to school. |
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| December 20th |
CK 115.
Natasha’s last visit with Dr Yan (Jackie) went well she is hoping to drop
the prednisone in the new year as her blood test results have been good
since starting the IVIG treatments. Natasha has an appointment at
Greenlane to check her bone density on the 7th of January and
her next IVIG treatment will be on the 14th January, so we will
see Jackie that day along with Haeley and hopefully have the lung function
test done at the same time. That will get everything out of the way all at
once. I Have had a call today saying that we should lower the Prednisone
to 7.5mg (1 1/2ml) after Christmas. That should please Natasha. |
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| The above graphic is from
MAORI FLAVA'D. Unfortunately I cant remember where I got the one on the side from |
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