Selfie

Not a great one, but keeping your hand still whilst juggling a wiggly 3 yr old isn't easy. But can you see how JJ's eyebrows are coming back darker. When I came back on Sunday after having some time out, this was the first thing I noticed and thought she had some smudges on her eyebrows!

So, a catch up on the week we;ve had, as its been busy.
Last Thursday I noticed that JJ's smile wasn't symetrical, and mentioned this to the drs. To be honest my first thought was stroke, but nothing else was noticeable. Was told to keep an eye on it. By monday, I mentioned it again, and the decision was to have a MRI and CT scan to make sure nothing neurological was going on. This was done on Thurs under a GA. We had to go next door for this, so when we came back we could see the front doors of the BRI. I did joke about making a break for it!
She's had her MMF and ciclosporin reduced for various reasons. BP and GVHD related. Her BP is high still so we have been in discussion with the renal team who have given us another drug to try and put a plan in place if this isn't successful. Her morphine background has been taken off so its just her PCA thats on, so we can push if we think its needed. We are now on 5 mls food per hour through her j tube, which is great. And will be increasing daily.
With regards to her face, it could be bells palsy, but we won't know until the report is back, Or it could be BP related, we just don't know. As for most of JJ's little quirks, I find its alot of guess work. Its frustrating, but the Drs do really value our opinion. Sometimes though we just want straight answers.
We've had a couple of instances where JJ has been sick, but I have narrowed this down to roughly when we give her meds through the tube. Discussions for the Drs round tomorrow I think.
Alot more has gone on, but this is the general jist. Bloods, platelets, IV's, blah blah blah.

Other news is that our dog Sally, went to sleep last Friday. Very sad to see her go, but she was 18, had bad hips, eyes, hearing and just a bit of dementia, and alot of incontinence. Alex has had her for many years before I came along. When we met, she was so jealous of me, but eventually came round and been a constant companion since. Caitlin was at her grandparents for half term, so had to tell her when she came here on Saturday. As you would expect there were tears from both of us. But she was amazing, and wanted to tell nana and grandad herself. For 6, she coped brilliantly and was very brave. I came home that night to go for a meal to celebrate my father in laws birthday. I caught her talking to our cat, saying 'you must miss Sally now you are on your own' It was horrible not to have Sally there.

Earlier this week, we had tears down the phone as Caitlin is missing me and JJ. After all its been 2 months since she has seen her sister. Managed to placate her by talking about a blanket I'm making for JJ, and saynig that I wanted to do one with pom poms around the edges and asking her for some help. All I need now is some wool, and some cardboard!
Today we had a conversation ' Mummy, what animal would you be?' As I have never really thought about it the first thing that came to mind was a cat.
'Well, I would like to be a rabbit. Mummy can I have one please?' Mmmmm. As we can't have any new pets in the house for a certain amount of time after BMT, I managed to get out of that one. At least for the moment.
I wonder what tomorrows conversation is going to be?

Personally I have found this week to be a hard one, probably brought on by my worrying about JJ's face, amongst all the other BMT related issues, But Alex, as usual, had a calming effect. And I hope he doesn't mind me quoting him....
'Take a leaf out of JJ's book, Life great if someones not sticking a needle in you.'
How could I argue.