Hiaa, sorry i didnt get chance to get on here yesterday...i was soo tired and everytime in the day i couldnt get on here cos the kids were on here!!
Yesterday was quite a good day, we had psychotherapy. This is more for me and dale not Lexi.. I swear she was trying to make me cry!! Lol she had me talking about the past all the times Lexi was in hospital.. I was like hello im trying to stay strong here lol! Anyway she was lovely and listened well :) We had speech and language therapy after this, Lexi done really well again she is very very pleased with her still, she said we dont need to use the sytinge any more she is doing fine to leave that. She also said to speak to docs cos she dont think she need to have both night feeds as she will probably drink enough by mouth! I spoke to the docs about this and they wernt happy to do this yet.. which im glad cos she doesnt sleep as well when shes not full in the night.! We had play picnic after this and it was just the same as any other day really, she rolled around drank a bit from the bottle its hard cos they say im not allowed to offer her anything but then she cant go over and grab stuff liuke the other children do!! Occupational therapy was next and she was over the moon with her, she said she is feeling things brilliantly and she was incredible in the lentil bath. I took a back seat and let her get on with it, the therapist done great with her, i could really see she had watched and learned from me how to be and how to treat Lexi :) Perfect! I was shattered last night all i wanted to do was have a shower and curl up and go to sleep. Lexi was sleeping in the afetrnoon and i looked in her cot and face just looked beetroot red! It had been flared up but not this bad, i called the nurse to check it and she gave me a cream, just a natural like cream. She also hadnt had a poo since Friday so i was concerned about this and after a doctor came up and "investigated" she had something to help her on her way!! OMG it helped her it actually made me sick in the bin when it came out the smell was rancid!! After all this she was lovely and settled! Our Irish friends lent us thier DVD player which has like 50 films on it so me and dale laid in bed and watched a film and went to sleep..finally one more day down lol! Day 7!! Woo hoo we come to the end of one week!! Physio was cancelled today the therapist was ill!! Great..not lol that means no therapys just play picnic so we would be bored and nothing to do! I didnt wake up in the best spirits, the morning went quite quickly and play picnic came around quick. when i woke in morning i said i would sit out of the picninc and let dale go in with her, by the time it came around i went any way! Wished i didnt afterwards, aww it was just too much for me the same old thing everyday Lexi had taken a few steps backwards and i just found it all hard, anyways i had to leave and go and have fresh air! I was reassured that she will have days like these and she will get better and we wont let her stop completely she will do this! Doctors rounds were at 2, and they said to cut out another feed tonight, so she now will only have her 9pm feed of 60mls. We gotta stay at this over weekend and then monday she will have nothing! I was concerned over this but they reassured me they are always there to reassess her they feel it is fine! Ok they know what they talking about lets get her moving :) Well all my horrible, down crappy, feelings were thrown out the window at 4.45 today :D Lexi woke after 3 hours sleeping sound and it was time for food. I had her pureed baby food spaghetti bolognese and after a few attempts of her with spoon she finally took to it and had a good 4 spoonfuls, like eaten, tasted and swallowed!! THEN we were giving her her milk and it was still dribbling all out the sides and i was like ths is coming out way too fast for her, she has started to suck more (she is learning it more everytime) and when she was sucking too much was coming out for her to handle. Me and dale decided to change to her other bottle, just the long neck ones wioth normal teats for babies, and i couldnt believe my eyes she was sucking and swallowing and she drank 20ml, then stopped needed a break like for not even a minute, then she drank another 20 then another, then another aaahh 80mls and not a spot on her chin!! Oh i was soo happy i am so proud of her, she is working her little socks of here she is gonna fight this to the end she has brought me back to being positive and happy and being here is all worht while!! Sometimes it gets hard to remember we are here for such a good reason ya no, knowing everyone is back home getting ready for christmas and we are stuck here in what i sometimes feel is like a prison lol! But dont worry im back on top form lol, and next week she will work wonders..! Like they said dont look at daily progress look at weekly!! Well this week is astonishing, when i told my mum she didnt really saz alot lol she was gob smacked haha couldnt believe it!! Im the same its mad how well she is doing! Right im babbling now, Lexi is sleeping again so im gonna go ave a shower and im hoping at 9pm when i try her with a bottle she will take enough so she wojnt need her peg feed :D that would be amaazing huh?? lol i shall let you know in the morning if she does! Thanks for all your support everyone love yaa lotss x x x x x
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