Well, I've pulled myself out of my
Big black hole once again. No doubt I'll find myself back in it again some time soon, but until we get results, I have to get on. I know we are not going to get good news, but until we know which condition it is, I need to stop researching/obsessing etc. But at the end of the day, there is something seriously wrong. The lactic acidosis which has led dr ch down this path is a process involved in rigor mortis :0(
We had an early start today. Lil Max (8) was picked up at the crack of dawn and is now in London to play in goal for Swindon Town F.C against Fulham. Incase u don't already know, Max was scouted last year and has quite a reputation for astounding goalkeeping.(Proud mummy gloat, but think I'm allowed).
Jordan's Auntie Tracey offered to have her today. Thanks Trace. So they were going to town and swimming with lovely lil Faith (my niece).
Which left Honk and I free to go to her first physio and occupational therapy assessment. I'm not quite sure what I was expecting, probably excercises and manipulation, but it wasn't. The 2 ladies were lovely and very tuned in with H. They basically just played with her, seeing what she could do. They said I am doing all the kind of things I should be, that Hope is quite strong. She proved her dislike of being on her front. She impressed them by rolling over. We need to work on head control. Which I knew. But they said her head doesn't lag, her main problem is midline control (keeping it straight). But then Hope is gonna struggle here because the cerebellum
(which in hope's brain is hypoplastic- under developed/small) is responsible for balance. Plus because she is visually impaired, she isn't getting visual input to help her. Overall, though it was a nice experience. They are going to see her again in October.
Oh, and they are getting her a special chair (like Jude and Kendall's). They think she's held too much- lol. Can't say that's going to change much :0)
Had a bit of an embarrasing moment just now. Anyone who has breastfed will sympathise. Just waiting for bus home and felt the 'let down'. Because we've been out it's been a long time since Hope fed, so I get in the door and see I have 2 big wet patches on my top. Oh well
Well, I have to say, I have been overwhelmed by all the messages of support and kind words. I actualy had a really nice message last night from an uncle I haven't seen for many years (hello uncle rick and kim), and so many messages from friends just saying that they are thinking of us. My phone is going off even more than usual. And that's a lot. I know you all feel powerless to help us. And really there is nothing anyone can do to change how things are, but it does mean a lot. At some point, I will have to go through replying to u all, and asking for your permission for me to copy and paste your messages onto here. I'd like to do that, so they are all in one place iykwim.so if u r reading and u don't mind me doing that it would be great if u could just drop me a message saying u don't mind, it would save me a lot of work. On a less positive note, I suppose, there are some people I'd have hoped to have heard from, and haven't. But hey ho.. U win some ....
My house is an absolute shambles! I need a maid. Or something. And a chef to mention it. But I guess once hope has finished feeding, I'll crack on and do my best whilst my heart is not so heavy.
1 week ago