Well, well, well, what a day! A Bloody good day :) Lexi is doing soo well... Today (yesterday but im writing late) Lexi feeds were cut down to 2 a day of 60 mls, these feeds go through her peg shauna, She will have these at 5pm a and 9pm. Lets see how she goes, like i said earlier they arent going to completely cut them down until she learns to eat by herself enough amounts to keep her satisfied as she gets really grouch, upset, angry and unhappy...not good when you trying to teach her things! So she has her feeds at night to satiusfy her and give her a good nights sleep!
Well we started the day with swimming at 8.30 :) great Lexi fave thing! It was a hydrotherapy pool, like getting into a big warm bath with her. She loved it, layed there completely relaxed swaying around pool. She did get active a little bit and was splashing away but she used it mainly as realxation which is fine :) After this she had Occupational therapy (bearing in mind she has had no breakfast, nothing since her measly 60ml last night) she was asleep when we got there, and the therapist (who is fabb) didnt want to wake her and make her unhappy especially cos she had physio straight after and then play picnic straight after that! So she laid her on a swinging hammock she stayed asleep and just swung her for the hour session, which apparently is still working on her :) She woke in a lovely mood ready for physio and ready to do some work! So next came physio with Eva! Those of you who seen the program on tele will have seen Eva, she was the physio who put her hand on the little girl and applied pressure to bring out her emotions and made her cry...! Well its called Craniul something something therapy (i am getting a write up on it later lol) she done this on Lexi, she said she will apply pressure to a certain part on her body and it will hit nerves and Lexi will remember all the past, all the time when she was in hospital and lots of what she has been through! WOW i thought! She told me she will react in one of two ways, either by crying and being upset, or by shouting and releasing tension! Well she didnt pin her down or anything and Lexi was very active before she done it and then after a minute or so she just stopped...looked up and was kind of just thinking she was soo still, this was for about 4-5 minutes and then after that she stayed really still and started to shout like really loud.. i couldnt believe my eyes it was quite emotional to watch! She stayed like this for about 10-15minutes! Eva is a brilliant therapist you can see she knows what shes talking about! She done some work on her feet and hands then just getting pressure through them, boy did she apply pressure im surprised she wernt bruised.. she was very forceful with her!! Aaah i gotta go Lexi#s breakfast just came in i gotta go try her!! I got amaazoing news to get to tho so will try to come back before 1st therapy!! xxxxxxxxxx Ok never mind lol i just went in and shes flat out Dale gonna call me when she wakes :) Straight after this we had play picnic and Lex is doing really well now she is still awake :D She done brilliantly in this hahaha when we first went in straight away lol i showed her a plate of custard (im laughing just writing this lol) she looked at the plate rocked her body back and for excited and stuck her face straight init hahah full on custard pied her own face like lol! She ws covered in it she had massive smiles on her face she thought it was hysterical just like all the docs and everyone else in the room hahha! Oh i 4got to say remember yesterday her speech and language therapist had told me to try her with a syringe full of food and to try different sippy cups well i went down to the shop (their version of boots/superdrug) and bought about 6 different types of bottles and also like a fruit shoot bottle! I tried her with some of these in play picnic but its not really a time to try and get htem eating and drinking its more for them to explore and play with the food. Well any way i filled her syringes with a custard yoghurt and she was putting them inher mouth, everytime she puts them in i push the syringe to get the stuff to come out, she was loving it i dont think she actually swalloed any but she was filling her mouth as far as she could and then spitting it everywhere..apparently the whole point of the play picnic :) Lol after all this she was shattered we went straight back up to the room to give her a little sleep before her next therapy. Next up was Speech and Language. So i packed up the carrier bag full of all the bottles i had bought to try and syringes and off we went, Lexi had woke by herself and was in a lovely mood ;) One of the bottles was like a bottle but with a bigger teat and handles and if you tipped it upside down it just poured out like a cup (hard to describe lol) the point of this was because she cant really suck properly so we need to work away from this cos she is past the age of sucking a baby bottle anyway! So the therapist (who is also great) was watching her as i sat her up and started to give milk slowly (through mouth with bottle yee) Her positioning was all wrong she said we need to tilt her back as she is crouching her head down and not giving her and easy straight neck for it to go down. so i had her tilted back on me like you would feed a baby and we started again with this bottle that is like a cup lol. She fugured out really quickly, by feeling her throat as i was going with hte bottle, that her swallow was very delayed. So then we had to try tipping the bottle up letting the milk in then taking it out to give her chance to swallow, well blow me down it worked!! I couldnt believe my eyes as she pulled it back took a mouthful, let me pull away, swallowed, pulled it back in :o i was so proud of her, yess alot of it tipped down her front while she was getting the hang of it but she done amazing.! the therapise was amazed by her aswell, she said she is doing htings now on day 3 which she wouldnt expect to see until at least week 2! WAHEEY thats my girl!! We have been told to thicken the milk up as she thinks she will cope with swalloing it quicker :) we will try that later!! Then she gave me 2 things for her to bite on , mainly at the back of her mouth to get her to stop grinding her teeth (which she is doing alot when eating!) When it was coming to an end the therapist said to me is this positoning going to be ok to give her her bottle? I was so happy i was like if i could cuddle her like this and give her a bottle beofre bed or whatever i would be over the moon and it started me off again then just thinking of being able to do it ya no! We went out then for food with the Irish family we have met, we gotta try and make things as nirmal as possible for lex so she dont feel pressurized or completely different! They also said not to try her with bottle and food too often as she will get fed up and then when she does get offered she is gonna wanna take it there and then cos she can constantly have it...at this stage for now anyway! So we went for a lovely dinner and lexi stayed awake the whole time..! She was awake from 1.45 to 5.45 which is huuge for her lol! As we were leaving Alma asked if she could give her a lolly (just like a chupa chup) i was like yee course dont think she will taste it tho! well blow me down again lol she took it off her and was licking away on it she is just surprising me all the time! Back at our room then wehen she woke we got her a bottle out and her advent calender woop woop lol! All the nurses working were german and couldnt understand a word of English grrr!! We were trying to ask them to thicken Lexis milk they couldnt understand so i will ask the therapist to write it down in German maybe! Well anyway we tried her with normal unthickend milk again she done brilliantly! Chewed up her advent chocolate for her she loved itrubbed it everywhere mind but loved it :D Well its actually day 7 (2/12) but its the morning now and she had a good night, she woke at 5.30am crying she was hungry cos she had hardly any milk in her peg yesterday so i got up got her her bottle and cuddled her into bed with me with her bottle and thought aww ill try it see if it will calm her, SHE DRANK 80MLS!!!!!!! I couldnt believe it, ok maybe she dribble some out but no way more than 30ml maybe came out (not even that) but she drank it and wenjoyed it and it settle her and she went back to sleep :D How amaazing is that! She has made my day! Ive tried to write yesterday update so fast lol but get everything in to tell you all this awesome news i may have gone on a bit lol soz! Well she has psycotherapy this morning, then speech and language (i cant wait to tell her the fabb news) then playpicnic then occupational therapy!! :) will let you no how she gets on k lots of love to u all thanx for comments i love logging on to see them :) Speak later x xx x x x x x x x
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