May 6th: 6 weeks down of Ash not being fed by tube

What a little legend our munchkin is!

Ashling is continuing to do well without tube feeding. She is still just learning how to eat so we can't really count food much in her daily calorie intake (unless you can quantify the salt off a cracker!) but she is experimenting more and more every day and she's getting braver with what goes into her mouth (though most of comes back out again). she's loving her new confidence though. In the past if she put someting in her mouth, she would panic and cry, resulting in us trying to yank it out or she would get sick and bring up a lot more than the little piece that had just offended her! Now she has great control, she puts it in, plays with it, tries biting it sometimes and then confidently spits it out again. The next stage has to be that she'll decide to devour it - well I certainly hope so anyway!!

She drinks about 500 mls of high energy formula per day and some water and that's what's she's surviving on. She has lost about half a kilo overall and is sustaining that (she's about 7.5 kilos) but hopefully in the next month or two she'll start putting on some weight again.

Otherwise, she was supposed to have her botox injections this week but they were cancelled due to being understaffed in theatre. We got a call on the morning - very frustrating. But we got a new date, Mon 18th of May so fingers crossed that that'll go ahead and be successful. They are hoping that if this works properly, i.e temporarily paralyses her hamstrings and gets her quads to work, they'll get a good stretch in her legs and put casts on again for another few weeks. If the overall process goes as well as they hope, she might be able to avoid knee surgery. We can only hope!

On a lighter note, Ash is so much fun at the moment. We are REALLY enjoying her. She cannot pass a person on the street or in the supermarket without saying "Hi Ya", "Hi Ya" until they salute her. She also insists on playing "Hidie...Boo" with complete strangers. What a laugh. Dunno where we got her, Lots of Love Car xxxxx

Caroline forgot to mention that Ashlings favourite game is what every she is playing with, be it a toy or a shoe, she puts it up to her ear and says hi, hi ya, immitating her ........guess who!!!!! I have to agree though she is great fun at the moment and is so enjoyable.
I'll write more next time.......Ger