|
Home | Introduction | A Note from Me | Mum's Story | My Vacations | Timeline | Photo's | Contact |
|||
 Timeline Entries 1999 to 2003 2004 2005 2006 2007 2008 |
|||
 |
|
2006 |
|
| 3rd January |
Rick and I are back from the Far North but the girls have stayed on with
their Auntie Tania and her Family and they will bring them down on Friday.
It’s very quite at home now. |
||
| 6th January |
The girls have returned. Tania said Natasha is very responsible taking her
meds every morning. I know she is very reliable, in the weekends she will
sometimes get up and make her own breakfast and she always takes her Meds.
We have written on the calendar what she has to take on each day. But I
still check when I get up but so far she always remembers. She’s so grown
up for a 10year old. |
||
| 12th January |
Natasha’s IVIG went really well today, the Doctor that put it in did it
fast and got a perfect vein first time so that was a relief. Natasha gets
a bit stressed about this now so at least this time it was over quickly. A
new rheumatology registrar came to assess Natasha before Dr Rudge came
down to see her with yet another new registrar who we have not met before.
Dr Yan also popped in to say hi and good bye as she is off to Melbourne to
complete her studies. All looks good at the moment Natasha’s prednisone
is to be reduced to 1/2ml or 2.5mg every other day now and she will not be
having another IVIG treatment for three months. This all makes me nervous
three months is such a long time I really worry about flares but I’m
excited as well hopefully she will finally get off of these horrible
steroids |
||
| 23rd February |
I haven’t got much to report at the moment. Natasha is enjoying being back at school and seems to be happy with her little group of friends. She is also back at swimming lessons and has started roller-skating lessons, but she is a bit worried about falling over and hurting herself.
It’s been six weeks since her last IVIG treatment and so far she seems to
be maintaining her strength. I will be keeping a very close eye on her
because a flare would be devastating now. |
||
| 23rd March |
Natasha appears to Ok but I think she is starting to get a bit weaker, she is feeling tired quicker when she has to walk and seems to be hurting her self more often. I think waiting 12 weeks between treatments is a bit too long. The signs of weakness seemed to start about the 8 week mark so I’d say that is probably the cut off for her. Latest blood test results are CK 119 Liver function test 378 which is a bit high.
Netball practice started last night and Natasha fell over and hurt her
knee, upper leg and arm but hopefully she will be fine. It didn’t stop her
from continuing with practice, but her leg was stiff when she got out of
bed this morning. |
||
| 6th April |
IVIG day again. It was a very long day for Natasha today. The Dr that came
down to the day stay unit to insert her IV was pretty bad at it, she tried
twice and then the nurse suggested we go to the emergency Department where
another Dr could do it. The Dr we had in ED was fantastic, very chatty
with Natasha and really quick with the IV she didn’t even notice it go in.
But as all this took time we didn’t get started until 11.45 and then sat
around doing crafts and homework from school and watching TV for the next
four hours. Natasha had a roller skating competition in the evening and
although she really wanted to do it and did try the first round she was
just too tired and sick to carry on, so I took her home and her little
sister came home with a friend after getting one first place, one second
and a "highly commended" certificate. Tash was a bit upset at not being
able to compete but I’m sure she will be able to do it next term. The
usual sickness just started a bit early this time; hopefully she will be
fine over the weekend. |
||
| 10th April |
6 years today since being admitted to hospital. Not a day I want to celebrate but one I will always remember it.
Natasha was pretty good after Thursday night she went to school on Friday
and stayed at her friend’s house Saturday night. So all in all she is
doing fine. We will be seeing the Dr on the 27th as she didn’t come and
see us in the hospital the other day so no further updated on reducing
meds etc as yet. And no answer about the liver function test which was
repeated the day of the IVIG. |
||
| 27th April |
This clinic visit with Dr Rudge went well. I explained that I thought
Natasha was showing signs of weakness after about nine weeks so her next
IVIG appointment will be in 10 weeks not 12 as it was last time. Dr Rudge
has also booked Natasha in for her next clinic visit in three months and
will have the lung function test done again then. She has said it is
easier to have her come into clinic than try and see her in the Day Stay
Unit. |
||
| 17th May |
Natasha is doing well I just thought it was time for an update. She had her first Netball game on the 13.5.2006 and she did really well. I was very proud of her although she was upset they lost 9/8 but it was such a good game I really loved watching her running around. Natasha has moved up a grade in swimming and new class is very advanced, but she can keep up just fine with all the bigger kids in her group and she is now swimming for 45min instead of 30min.
As well as netball and swimming she is still doing roller skating on
Thursday nights so she is very busy with all this physical stuff, she’s
probably fitter than most of the other kids at school. Next IVIG due on
the 15th of June. |
||
| 27th May |
Natasha’s team has won their first game of Netball and it wasn’t a
push-over team either, it was the team that trounced them last week.
Natasha played 3 quarters, 1st quarter at Goal Keep so not much
running around, 2nd quarter was off, but the next 2 quarters
was Wing Attack and Wing Defence, so lots of running around. She was
pretty much running on fumes near the end of the last quarter. The girl
she was marking was very good and very competitive and scrapped for the
ball quite vigorously. Natasha is getting the hang of the roughness and is
starting fight for the ball too. Compared to last year where no-one would
fight the ball off the opponent, they are really getting stuck in and
trying to rip the ball out of the opponents hands, bodies go flying, it’s
all a lot different second year round. Shyness and indecision has made way
for the competitive need to win. |
||
| 20th June |
Natasha’s IVIG appointment was bumped out by an extra week because the
junior doctors were all on strike from the 15th until today.
All went well today the Dr Gabby? (I can’t remember her last name) put in
the IV in one try and Natasha hardly felt a thing which is such a relief
after the traumatic time she had with the last IV. We wish we could have
the same Dr again but it’s always a new one as they seem to rotate through
the different services |
||
| 22nd June |
Today is Thursday the second day after the IVIG treatment and again
Natasha is extremely sick with a pounding headache and an upset stomach.
She can’t eat and can’t sit up and has thrown up a few times. I took her
to our GP but she hasn’t got any answers for this either all I really want
is something to make her feel better. All the Dr could suggest was to try
giving her Pamol and the i-profen at the same time and see if that helps.
But Natasha remained miserable all day and again missed her Roller Skating
prelim Competition. So now her little sister has 4 more certificates and
Natasha has none. Thankfully the next IV treatment will be mid term so she
will only miss a normal lesson if she gets sick next time |
||
| 20th July |
Natasha had a clinic visit with Dr Rudge today and she is very please with her progress her CK remains at 119 and as she has been on .5ml or 2.5mg of prednisone every second day for some time now Dr Rudge thought she should be able to stop taking it all together. So starting tomorrow no more steroids, All her other meds will remain the same and she will continue having IVIG treatments at the moment. I asked again about the reaction to the IVIG to see if anything can be done, Dr Rudge invited in another Dr (the paediatric registrar) who deals with allot of kids taking IVIG and we discussed pre medicating with prednisone only on the day of the IV and also taking the treatment over a longer period say 6 hours instead of 4 to see if that helps with the headaches that come on the second day after treatment.
So fingers crossed that Natasha is fine off the steroids this time and
that the change in administering the IVIG will help as well. |
||
| 9th August |
Natasha had an appointment today with Orthopaedics to have a look at a
lump she has on her right big toe. We have been told by our GP that it is
probably a Ganglion and will go away eventually, but two years later it is
still there and starting to cause trouble with buying shoes. We had an
x-ray done first and then spoke to one of the junior doctors who tried to
convince us that it should be left alone. Then he brought in a more senior
Dr who decided he would like to investigate further as it appeared to be
something other that a ganglion so we will have to come back to have an
ultrasound done on it another day. |
||
| 29th August |
Luckily the nurse in Orthopaedics has arranged for Natasha’s ultrasound to be done the morning of her IVIG so we were at the hospital bright and early today to get that out of the way before going to day stay. The ultra sound technician wasn’t sure what the lump was either so he will send off his findings to the Orthopaedic Dr and they will get back to us with there recommendations. Natasha has also had a cough for a couple of weeks and the registrar had X-rays done of her chest and will schedule another lung function test for her just to be sure nothing serious is going on there. We had
another fantastic Dr (Jason? ) this morning putting in Natasha’s IV he was
very good with her and had it in before she could get worked up. It was a
very long day today as the infusion was over 6 hours instead of 4 to see
if this would help with the sickness Natasha gets two days later. She was
given 10mg of prednisone prior to the infusion as well. So I’m really
hoping this will help. We finally left at 6pm after arriving at 8am. So
Natasha is very tired hopefully she will be ok tomorrow for school photos. |
||
| 31st August |
Well it didn’t work Natasha has been just as sick today as usual, I am
going to put a message on the Curejm message board and ask what the
children over there get as pre-medication for their IVIG treatments. |
||
| 12th September |
Natasha still has a very bad cough so I will be taking her to the GP
tonight, I have not heard anything from the Hospital re the chest x-ray
she had the other day. I has also noticed she seems to be getting a bit
redder in the face lately, whether that is because it is now spring and
the sun is out a bit more or other reasons I don’t know but I am going to
ask to have a blood test done again. She has also had a few aches and
pains here and there and has mentioned feeling a bit weaker, hopefully
this is all nothing just us both being paranoid about being off of the
prednisone but it’s best to check it all out now instead of waiting to see
what happens. |
||
| Back to the top of Timeline | |||
 |
|||
Home | Introduction | A Note from Me | Mum's Story | My Vacations | Timeline | Photo's | Contact |
|||
| The above graphic is from
MAORI FLAVA'D. Unfortunately I cant remember where I got the one on the side from |
|||