After four days at home all has been well, Kirra gets very angry and
frustrated that she cannot walk or crawl any more, she can manage to sit up a
little bit (all be it very wobbly). I have still been giving her injection every
6 hours, but after noticing some red marks on her leg where the long line was
situated, the nurse came to check her and unfortunately her line had started to
leak and cause small burn marks on her leg. We had to take her back to PMH for a
new line to be fitted. After several attempts in three different places the
doctor was unable to fit a new line in, and opted for a small cannula in her
left wrist. He agreed this wasn't ideal and would not last long given ten
injections a day. Also as it is only a very short line Kirra can feel the drugs
going in and this can be quite distressing for her.
At 5pm on 21st
October the nurse came round to check Kirra's leg burns. The burns are healing
nicely, but Kirra's cannula had packed up again. Back to the hospital, this time
the Doctor did not try for a long line. He just put another cannula in Kirra's
right hand. Two hours later we are back home and all is fine.
Kirra's progressing well she still is unable to walk, however she has been
to the Physiotherapist and she was quite happy with here progress. Her brain is
sending the right messages to her muscles in order for her to relearn her
balance, and she will not need any therapy. It's just a matter of time before
she will be walking (we hope!!)
Kirra's received an invitation the the John
Radcliffe Infirmary Leopold ward children's Christmas party on the 21st
December. I'll let you know how she got on.
It's Now the 21st Kirra can Walk about three steps now, and can get around
using the furniture for support. We arrive at Oxford at 2pm for the Children's
Party. Kirra just sits and watches everyone. The two other patients who had
Cerebellar Astrocytoma are both doing fine, in fact you would never know they
had been ill at all. Another boy who had a spine tumour when Kirra was in, is
also doing well. He can walk using a stick, which is a miracle on its own.
It
was good to see all Kirra's Nurses and Doctors there. They had two clowns to
amuse the kids after which all the kids sat down and three belly dancers came
on. I don't know about the Kids, But I enjoyed watching them. After eating lots
of food, Santa arrived and gave presents to all the girls and boys. Everyone was
very pleased to see Kirra and see enjoyed the experience even if she didn't know
what it was all about.
Well It's Here again, obviously we decided to spoil all the Kids this year.
Mum had the brilliant idea of getting Kirra an indoor Bouncy Castle. After
rearranging the sitting room and spend 3 hours blowing it up, Kirra wouldn't go
on it, bless her!!!!! After lots of encouragement she did finally have a go,
it's a giant play mat now. Still, she's had a brilliant Christmas, Watching her
face opening presents made my Christmas. We have Teletubbies everywhere now. All
in all this has been the best Christmas for all the family.
A quick update. It's now March and Kirra is doing very well. She finally
got to go on holiday. ( I'll put some pictures up later.)

She's been back to Hospital for her check up and everyone is
pleased with her. Her balance is still not very good, but she is still
improving. She should be going for the Post-Op MRI (we asked for) soon. 1st
April now, Kirra's Walking quite well now. No other changes. Three weeks until
her second birthday!!!!!!!!!!!!
Kirra's 2.
It's the 23rd of April and Kirra's second birthday, strange how
this event is normally taken for granted. Today is a day for family only. As
Kirra loves animals we have decided to take her to the Zoo. I wont go into all
the details, basically we all had a brilliant day. Kirra loved the Elephants
best.
Kirra is now going to Play school one day a week. Because she is still
quite unsteady and falling over a lot the Physiotherapy lady is arranging a
safety helmet for her to wear.
We have been back to the Radcliffe infirmary
and they are very pleased with Kirra. The Post Op. scans show no anomalies and
we will only require a yearly visit now. All is looking good Kirra's balance
continues to improve.
Quick update 24-May-2000. Kirra has been back for her second check up. All
is well.
Her balance is around 80% normal. She walks well and enjoys life to the
full.