Wednesday, 5 September 2012

2 Steps Forward 1 Step Back




We had some great blood results last week.  Allegra's liver function has come down to 364 from 668, so weaning from medicines has given her liver a rest  and time to recover.  This has been something I have been requesting since mid May.  It again shows that you have to persevere with your request and constantly ask your Oncologist.  Ours just (forgot??) about Paracetamol.  Continued usage over a long period of time has a major affect on the liver.  Why did he keep sending us for tests when he could have eliminated the obvious? Maybe he is too experienced to look at General Practice.  Conveniently for us he went on leave and we have been seeing Dr Molly who we are extremely happy with.  She goes above and beyond in our consultation, and most importantly Allegra and I love her.  
Allegra's blood is finally in the "normal range" with her Haemoglobin at 116 and Platelets at 257and there are only a few asterix left to deal with.  Yay for Allegra!!!!!! 

 At this stage Allegra's central lines (double Hickman) will be coming out on Monday.  I have started talking about it to Allegra saying, "we can take your lines out soon baby".  She pulls her top down and holds her lines saying, "no mummy, mine."  Of course she is attached to them, they have been attached to her for 9 months.  We have them flushed and the dressing change every week, which she is just becoming ok with and now they are leaving her.
On the downside Allegra got her first cold which meant we were housebound for 10 days, she just started getting over it when a walk in the freezing wind bought it all back.  And the little 2 year old toddler is refusing to blow her nose.  Why?  Because she can refuse and I can't make her.  Arghhhh determined 2 year olds with a strong personality.  I wonder where she gets it from?  Yes I know, you don't have to answer, her mummy.  I love it but at the same time dislike it.
And as if she hasn't had enough my poor little Allegra has been projectile vomiting and has chronic diarrhoea.  We are avoiding being admitted into hospital.  I have been running electrolyte replacement through her feeds to rehydrate her.   It was a lot easier dealing with poo poo and vomit in hospital, all I had to do was throw the linen in the bag, walk to the trolley and there it was - clean linen again.  Or better still most of the nurses made up our bed for us and poor Ma Mar was doing all of our clothes washing.
We just want a break, I am so tired of having an ill baby and Allegra deserves to be well.
Allegra's weight was 9.9kg, which is nearly the weight we were admitted at.  I have started to run her feeds through the night so my little Allegra has a chance to be hungry during the day.  Just when things were looking good she gets sick.
My little Allegra walks only holding one hand now and she takes steps on her own at home.  
video

I dreamt of this moment while in hospital.  I missed us walking holding hands the most and now we have it back.  So together we walk and walk and walk.