We have had a successful day today! We had doctors round first thing, and they were talking about removal of the peg and how she would take her medicines....nooooo!! lol that was one thing i didnt want to do. I have insisited i want to keep it just for medicines but Professor Scheer says if we can get it to taste nice then there is no need for the peg! I have told them i will wait and see but i really dont want this out and i am goin got stick my ground on it.I will listen to and go with whatever but sorry nope its staying..! We are giving her movicol as she hasnt been for a poo since Friday and thats gotta be uncomfortable! They have never met anyone with Lexis condiditon before but then they have had lots of children who have had really rare conditions and been to cure them! I went in with a lot of questions for them and my final one was 'now you have met Lexi and know what you are dealing with are you still confident you can wean her' Big smiles all round and fantastic reply off Dr Dunitz "Absolutely, Yess Yess!"
Lexi had occupational therapy again then and did really well. She know how to work these therapist though lol she has them enough at home, she just closes her eyes and cries lol! No lexi you have to work now come on!! In todays play picnic she done excellent...LOVES chocolate she was biting and chewing on another chocolate umbrella and devouring a spoon of nutella lol! She had mashed potato smeared everywhere lol and was tasting loads! After this she had speech and language therapy and done brilliant in there too. Her therapist is great :) really knows how to communicate well with her. She gave her a syringe full of water, first of all to just play but she put it straight in her mouth so she pushed the water in slowly and lex tasted it and swalled bits (spat most out but tolerated it) I have now got to do the same but with like tea or milk or anything with more calories. I asked how i can teach her to suck again but its not possible she probably will not learn again as its a reflex from birth and it doesnt come back! So we are gonna try a beaker, a cup, a straw, a sports cap bottle.. lots of things really.! Everyone is very proud of her, me and Dale especially she is taking to everything really well! Aaarghh theres soo much i got to say my eyes are just closing i am soo tired.... Dale is just waking her (we always got to wake her she wont wake on her own) we gonna syringe some milk and custard in her mouth see if she wants it then shes gonn ahave a nice bath :) Will probs come on and finish more in the morning, Im up at 6 so may aswell lol! Thanx for comments guys..Aunty Arrrnet glad your enjoying keeping up to date and dont worry we be back in full force before you no it nice and LOUD for you again ;) Thank you Jill, yess Eva is great! Do you know where the cable cars are near here? I am gonna ask in the morning maybe but last time we got sent to completely wrong place lol! Swimming in the morning and lots more therapies missing everyone loadss
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