Oh God DLA!!!

[sparklygothkat]

I have only just finished Ds' renewal form, his DLA runs out at the end of july, will this be enough time..?? shit!!

Yes nice to meet you too!
ds physio said its kind of mixed blessing, makes everything hard work so tires more but also those floppy bits may have helped him retain a reasonable range of movement.
Apparently she said he's typical of a prem baby!

DS' CP happened in pregnancy and was only 4 weeks early. Hi damage to his brain isn't 'regular' damage, so they don't know how he will be affected as he gets bigger. GOSH have said that they are very impressed that he still is mobile as in theory he should be in a wheelchair by now. But he has been assessed for mutli level surgery recently and it looks like it is all going ahead soon

ds didn't show any bleeds on the untrasound in SCBU, he was born at 28wks but we also believe his damage happened during pregnancy.
We turned down an MRI because at the time his lungs were not good & I didn't see the risk of GA was worth it. But as he has got older & shown other anxiety/OCD & autistic type behaviors its looking like it may be helpful.
What is the surgery for?

they are going to release his muscles and tenons, to try and get his feet on the floor (walks on tiptoes) and to try and get his hip back into position. his left leg is 2cms shorter, but its not a true leg length problem, it because he pulls his hip up to walk and is making his hip displace. All very confusing tbh.

ooh sounds like alot for him (& you) to go through, I hope all goes well.

Thanks we are having the operation at GOSH where he is well known to the staff and he is under one of the best surgerons there. He was having botox injections from the age of 4-8 but they didn't give the effect after he hit 7, so it is the next step. He had a GA last year for the last lot of botox, as they had to inject his hip muscle and that was hard enough for me, so I am not looking forward to this at all