It’s the end of October already!
Where has that month gone.
I thought I’d do a little catch up blog, just so everyone knows what’s roughly going on in our life.
BG is now year 4! She is just amazing and I can not credit her enough at what a massive help she is to us. She is so young and yet helps us in ways her friends couldn’t even dream of. We try to keep her life as normal and as childlike as possible, but as a young carer and a sibling to additional needs, we do find this hard.
For the past month she has been getting her migraines a lot more than usual. When she had one at school (she had only ever had them at night). I went to the doctors where they prescribed her some medication as a preventive. 3 weeks on she hasn’t had one migraine, we are due a doctors check up in the next week or 2 so we will see the next stage holds for her.
As for SB he is showing signs of OCD and some traits of ASD. I am not for one second he is on the spectrum but we are starting to notice little things. The way he has to have his socks just so, the over sensitive Touch sensation when it comes to clothes. Just little things that are starting to show… I am 100% sure a lot of the behaviour is attention or copying MO but I am keeping a close eye on things.
BBG… what Can I say about BBG. She is starting to noticeabley have bad days again. We did spend time at hospital due to the bad morning of no movement. She has just generally been extremely weak. She does have good times when we go out and about but she isn’t strong at all.
Our house is also like a sauna as she still gets ice cold so quickly, I am loving it where as Dad could easily wear shorts in snow.
We are making progress however as we have ruled out some things. We also have our first hydrotherapy booked for Wednesday!! Somehow instead of waiting months we only had to wait 3 weeks!! We are extremely excited to see how this improves BBG.
BBG is now standing with support however but no signs of unaided standing or walking. She has not made any progression in her speech though.
Next week we are up to GOSH and will let you know how that goes. I’m slightly petrified as it’s on my dads birthday, what if they give us a diagnosis, I get you will always remember the date of diagnosis but to remember it in my dads birthday is something I don’t want.
Then we get onto MO. Our boy wonder! He is amazing and he is coping with us packing up the house, with going back to school after a holiday, really well. I’m not saying his coping anything but coping but for him he is doing remarkably. We have had so many chicken wing moments (he does a chicken wing movement when happy) it’s beautiful but his stunning is there. I wish he just felt comfortable. Isn’t that what any parent wants?