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Posted by Pippa Duffy
on July 29, 2009, 22:01:25, in reply to "Re: Leo's Biopsy Results"
86.159.153.221
Ooh, nasty to have had a tumble - try to think of it as the 'bad dress rehearsal' before the 'perfect performance'! I chuckled at your stress dreams - sound very Monty Pythonesque! I know you and the girls will do brilliantly, and thoughts of Harry will spur you on when the going gets tough, and you'll find yourself grinning and being so glad that he's here! I'll be rooting for you and asking the universe for some 'cool' weather.
A fantastic woman from our local disabilities network came round today and spent from 10am until 3.30pm ploughing through the DLA form with me. She was amazing - a determined demon and really great at getting the phrasing accurate and motivating. It was obviously very grim and a real reality check for me, but at the same time, made me (even!) more determined to ensure that our precious Leo gets everything that he can by way of support, both financial and also therapy. I realised how much I have been doing for him in terms of attending to his additional medical/development needs - no wonder I'm knackered! Andrew took him off for the first part of the day, then he only napped for 15 minutes, so for the last 2 hours, he was here in the kitchen with us, and Lizzie was holding him, while I typed and we wordsmithed together. I just had to look at him to know that he deserves the BEST that we and 'team Leo' can give him!
Yesterday we had his audiology appointment and it has confirmed that Leo has conductive hearing loss in both ears. It is classed as 'moderate' (it goes mild, moderate, profound) Anyway, his ear canals are very narrow, so not a candidate for grommets (don't like 'em anyway and don't want additional GA's to put them in each time they fall out!) and he won't be able to use behind the ear aids. But he CAN use a new device called a BAHA (bone anchored hearing aid) Softband. An elastic headband with a hearing aid attached to it, that sits against the bone behind the ear and transmits vibrations straight through, so bypassing his outer/middle ear problems. The Consultant agreed that this was important for Leo so his speech and language isn't further delayed, and also I was especially keen to restore his hearing as much as possible for hospital stays(although maybe it's better that he doesn't hear the vampires coming for his blood....!) I feel tired and a bit drained today after yesterday and today's mammoth form-filling, but feel that we're making some positive steps. And he now weighs a glorious 7.49 kilos!!!! Soon be calling him 'Fat Leo' (said in a Mafia kind of way!)x
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