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.ONE MONTH AFTER KIRRA'S OPERATION.
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.
TWO MONTHS AFTER KIRRA'S OPERATION.Kirra is starting to sit up and hold her balance. She can also crawl for a short distance. She is still very wobbly but continues to improve. After two more cannulars pack up Kirra has now finish all her antibiotics 31-Oct-98. On the 3rd 0f Nov. we take Kirra back to the Radcliffe Infirmary for her check up. They are happy with her, However I don't think they expected her to be so unsteady still. We know two other people with the same tumour as Kirra who are up and walking with no problems. Kirra's slower recovery is due to the central location of her tumour and the surgeon had to cut through her brain to remove it. The other two patients had their tumour on a Cerebellar hemisphere. This means it was easier to get at and less brain trauma is caused. ( the last statement is my opinion.) Kirra is expected to make a 95% recovery. What that means only time will tell.
As there is a 10% chance of recurrence of the tumour in Kirra's life time. I ask for an MRI scan to be taken. This is to give the Doctors a comparison if problems develop in the future. There is a possibility the scar tissue will show up on a scan and I would feel better if there was a previous scan to show any scar tissue present now. Kirra's next appointment is in February.
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.
18th December 2012, The only difference from any other kid is a slow writing speed and her hand gets very tired after writting for a while.... all is good ;-D
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