I haven't had much chance for feeling gloomy today; Max had a 10:30 kick off so it took great effort to get out the house that early (God, I'm i'm in for a shock when they go back to school on Tuesday lol).
I managed to give her honkness her cereal, but her 1oz of infatrini with her meds in ...well, it's beyond a joke. I took it to footy, I tried, Jordan tried, chris tried, and even Sam (a fellow soccer mum) tried. The match was over and there was still more than 3/4 of an oz left, so we came home and she finished it.
I was concerned that her getting the full dose of meds nearly 2 hours late would result in lots of seizures, but thankfully not. Infact, and I suppose I overlooked this is my doom of yesterday... Yesterday was ....
SEIZURE FREE!
And touch wood...
So is today (so far)
That's on 800mg of vigabatrin.
Hope was given some cash my her god mother the other day. I was going to bank it for her, but yesterday decided to go and buy some nice things.
After much deliberation and trying out, we bought a 'babasling'. It's fab! Today Honk has been helping me round the house whilst breast feeding! And then in 2 other positions too so she can look about. I'm really chuft with it.
We also bought a BEAUTIFUL grey knitted Humphrey's corner dress. It was more than I'd usually spend on an outfit for Hope, but soo worth it!
And we bought some lil noisy toys for her too.
We've been to town too. A bit of last minute getting new school stuff.
Then we've come Home and hope has just been in a delightful mood so we've been doing lots of playing.
Hope has been rolling from her front to her back (mainly because he Hates being on her front). I've been getting her to look towards sounds (not much I know, but this is something she really needs to work on). Also, I've had her sat right up in her rocking chair, which positions her feet just at the right position for her playstation ( the fisher price superstar thingy). She seems really pleased with herself when she makes the music go off.
Infact she enjoys it so much, that we are all curently sat in darkness listening to 'if u r happy and u know it...' so she gets the full effect of all the flashy lights.
She's really going for it now!
Now, u may think I'm insane, but we r all pretty convinced Sam was playing with his lil sis earlier. She was in her rocking chair in Sam's corner ( where his photos and special things are. Hope had fallen asleep in her chair so I turned off the swinging motion. A few minutes later it was back on. Chris turned it off. It came back on. Then Max turned it off. Guess what! So we decided it must be Sammy being a monkey. How cool :0)
Over and out
Xxx
The Cemetery And The Weekend
5 years ago
Hey Caz,
ReplyDeleteWe've been keeping up with Hopes blogs, sorry for the delay in letting you know but I find it sooo over whelming, just dont know what to say :( Dont know how you guys keep going... but you do and you deserve all the best things for it!! Like everyone else I wish there was more we could do...
Thinking of you xx
Aimee & Nath